research paper topic bioethics

73 Bioethics Essay Topic Ideas & Examples

🏆 best bioethics topic ideas & essay examples, 📌 simple & easy bioethics essay titles, 💡 interesting topics to write about bioethics.

• Bioethics: Definition, Importance, and Scope In the United States, a National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research, was set up in 1974 under the National Research Act and was charged with the duty of […]
• Concept of Bioethics in Society The classical assumption in the discipline of bioethics is that the field is concerned with the dilemma of determining the most ethically appropriate action in the healthcare setting.
• Bioethics in the Film “The Cider House Rules” The film revolves around the life of an orphan named Homer Wells and the activities that transpire in the orphanage that is run by Dr.
• Bioethics: Definition and Application The distribution of restricted resources and end-of-life difficulties are two of the most prominent ethical dilemmas and issues in medicine. The importance of debate and exposition in bioethics is a crucial premise.
• “The Triumph of Autonomy in American Bioethics” by Wolpe It is important to note that in the USA the principle of autonomy has overweighed the rest of the principles suggested by Beauchamp and Childress.
• Bioethics: Which Theory Makes the Most Sense? Out of three well-known theories, Kantian ethics is the most optimal in terms of considering morality and human conduct, unlike natural law theory and utilitarianism which mainly disregard justice or strive to find the correct […]
• Bioethics as an Essential Part of Healthcare Models are interconnected in terms of reliance on internal and external factors of care, yet the narrative medicine model is the most crucial due to its emphasis on transparent communication and attention to patient history.
• The Value of the Human Person in Terms of Bioethical Issues Since the well-being and health of a person is the most valuable thing in life, and abortion is designed to help a woman, the issue of life and health comes before any controversy.
• The Main Principles of Bioethics According to the concept of beneficence, a medical professional has a duty to act in the patient’s best interest rather than their own.
• Bioethics and Its Main Principles The first example of that is that during a study, the researcher must never provide patients’ data to third parties unless it is necessary and agreed upon with the patients.
• Bioethics: Human Organs Markets The sale and use of human organs after the death of a person is a complex ethical and moral issue that people have decided on in various ways at different times. The commercialization of the […]
• Bioethics Principles in Healthcare The principle of autonomy underlies patient-centered care and means the primary postulate of the will of the patient in caring for their health, exceeding the will of the doctor to intervene.
• Bioethics Committees: The Role in Society In engaging the members of science who use medicinal technologies, bioethics committees ensure the youth and the elderly have a voice in the care received.
• International Bioethics and Genetics Genetic discrimination is a problem of bioethical significance in which a patient’s confidential rights are violated to create favorable conditions on the part of the person or company who is the subject of the discriminatory […]
• Human Dignity in Philosophy and Bioethics It is because of the opportunity to master the concepts of good and evil and use them morally a person differs from a thing.
• Bioethical Issues in Health Care – Opioid Overprescribing In order to address the problem of opioid overprescribing in healthcare facilities, administrators should seek to implement and support the application of the so-called analgesic ladder for patients with chronic pain.
• The Human-Subject System of Protection in Bioethics The principles became the foundation and cornerstone for the research regulations and ethical codes that followed the Nuremberg code After the Second World War, the world superpowers focused most of their attention on finding cures […]
• Bioethics Policy Advocacy Memo The government has the moral obligation to ensure human dignity and at the same time, it is struggling with the implementation of a person’s democratic right to freedom and liberty.
• Bioethical Position on Medical Futility Nursing Advocates for the withdrawal of treatment for severely deformed infants base their arguments on the fact that treatment for severely deformed infants is futile.
• Bioethical Issues in Treating the Terminally Ill On their part, the trans-disciplinary team, led by the head nurse, is guided by the values of offering the greatest good to the patient, information disclosure, and an overriding desire to conform to the set […]
• Bioethical Decision-Making in Nursing Practice The paper will discuss nursing support in the health situation while specifying the role of the nurse as the patients’ advocate.
• Genetic Manipulation of Human Embryos: Bioethical Issues Nonetheless, although the modification of human genotype may help in achieving a perfect genetic composition and eliminate a number of genetically transmitted diseases, there is a looming risk. The assembling of genetic makeup to enhance […]
• Genome: Bioethics and Genetic Engineering Additionally, towards the end of the documentary, the narrator and some of the interviewed individuals explain the problem of anonymity that is also related to genetic manipulations.
• Bioethics. When Abortion Is Morally Permissible Abortion as we all know is the deliberate removal of a foetus from the womb of a female resulting in the death of the foetus.
• Bioethics, Public Policy and Science: Tech Philosophy This research seeks to provide a thorough analysis of the interrelation between stem cells research policies, bioethics and political and public policies and debates.
• Bioethics: Starson vs. Swayne Case There is no denying the importance of the fact that its development was greatly connected with the progress of biology, medicine and anatomy which opened the issues of cloning, genetic transformation.
• The Essence of Philosophical Bioethics In the second section, the paper discusses the personal opinion of the writer on the effects of the course on personal worldview, self-concept, and other behaviors and activities.
• Jonathan Moreno: Bioethics After the Terror Based on the above facts, Jonathan Moreno in the article Bioethics after the Terror analyses the possible implications of bioethics that could result in tension in the field that has never witnessed major changes in […]
• Human Dignity and Bioethics The current paper is a critical analysis of the controversy surrounding the issue of human dignity and bioethics. On the contrary, it is the ability of the individual and the society in general to set […]
• Bioethics: Artificial Nutrition and Hydration Based on the arguments presented in this discussion, it suffices to mention that withdrawing or withholding of nutrition and hydration remains a controversial issue.
• The Major Components of Bioethics in Healthcare The second component is patient autonomy which refers to the right of a patient to give an informed consent in the course of treatment.
• Bioethics Education and the Development of Nursing Students’ Moral Competence
• Religion and Culture and Their Impact on Bioethics
• Work of a Paediatric Bioethics Centre During the COVID-19 Pandemic First Phase
• Bioethical Conflicts of Gene Therapy
• The Theorisation of ‘Best Interests’ in Bioethical Accounts of Decision-Making
• The Bioethics Surrounding the Concept of Human Cloning
• Difference Between Bioethics & Ethics in Nursing
• Program in Women and Children’s Bioethics
• Exploring Values Among Three Cultures From a Global Bioethics Perspective
• The Uses and Abuses of Moral Theory in Bioethics
• Bioethics Center Breaks Out of Midwest
• Human Rights and Bioethical Considerations of Global Nurse Migration
• Center for Practical Bioethics Steps up During Pandemic
• A Sensitive Period: Bioethics, Human Rights, and Child Development
• Bioethics and Health Informatics in Nursing
• Ethics, Bioethics and Nursing Ethics: Some Working Definitions
• The Role of Philosophy and Philosophers in Bioethics
• Ethical and Philosophical Implications of the Field of Bioethics
• Bioethics: The Law, Medicine, and Ethics of Reproductive Technologies and Genetics
• Modern Assisted Reproductive Technologies and Bioethics in the Islamic Context
• Introduction to Bioethics and Ethical Decision Making
• Genome Editing Among Bioethics and Regulatory Practices
• Bioethics: A Look at Animal Testing in Medicine and Cosmetics in the UK
• American Society for Bioethics and Humanities
• Child Rights and Clinical Bioethics: Historical Reflections on Modern Medicine and Ethics
• Working at the Center for Practical Bioethics
• How Bioethics Can Enrich Medical-Legal Collaborations
• How “Moral” Are the Principles of Biomedical Ethics
• Ethical Aspects of Relationships Between Humans and Research Animals
• Meeting the Publishing Needs of the Bioethics Community
• Bioethicists Can and Should Contribute to Addressing Racism
• Critical Thinkings About Bioethics Mediation
• What Makes an Anti-racist Feminist Bioethics
• Bioethics and Human Rights in the Constitutional Formation of Global Health
• Assisted Reproductive Technologies: A Bioethical Argument for Medicaid Coverage
• The Value of Metaphorical Reasoning in Bioethics
• Art Exhibit Supporting Center for Practical Bioethics Celebrates Wishes of Older Adults
• The Mission of the Center for Practical Bioethics
• The Bioethics of Assisted Reproductive Technology
• Bioethics in Health Policy Development
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102 Bioethics Essay Topic Ideas & Examples

Inside This Article

Bioethics is a fascinating and ever-evolving field that explores the ethical and moral implications of advances in biology and medicine. As a student in this field, you will likely be required to write essays on various bioethical topics. To help you get started, here are 102 bioethics essay topic ideas and examples:

• The ethics of gene editing: Should we alter the human genome?
• The moral implications of cloning animals for food production.
• Should parents have the right to genetically modify their children?
• The ethics of using animals in medical research.
• The ethical implications of using animals in cosmetic testing.
• Should we allow for the creation of designer babies?
• The moral considerations of genetically modifying crops.
• Should we use genetic testing to screen for potential diseases?
• The ethics of human-animal chimeras.
• Should we legalize physician-assisted suicide?
• The ethical implications of embryonic stem cell research.
• Should we allow for the creation of hybrid embryos?
• The moral considerations of using animals in organ transplantation.
• Should we use genetic engineering to revive extinct species?
• The ethics of using animals in sports and entertainment.
• Should we use genetic engineering to enhance human intelligence?
• The moral implications of using animals in zoos and aquariums.
• Should we use genetic engineering to eliminate genetic diseases?
• The ethical considerations of using animals in circuses.
• Should we use genetic engineering to enhance physical attributes?
• The moral implications of using animals in the fashion industry.
• Should we use genetic engineering to create organs for transplantation?
• The ethics of using animals in the production of fur and leather.
• Should we use genetic engineering to increase lifespan?
• The moral considerations of using animals in the pet industry.
• Should we use genetic engineering to create superhumans?
• The ethical implications of using animals in hunting and trophy hunting.
• Should we allow for the creation of artificial intelligence?
• The moral considerations of using animals in the entertainment industry.
• Should we allow for the creation of autonomous weapons?
• The ethics of using animals in the military.
• Should we allow for the creation of human-animal hybrids?
• Should we use genetic engineering to eliminate mental illnesses?
• The ethical considerations of using animals in the fur industry.
• Should we allow for the creation of genetically modified organisms (GMOs)?
• The moral implications of using animals in scientific experiments.
• Should we use genetic engineering to enhance physical performance in sports?
• The ethics of using animals in the production of cosmetics.
• Should we use genetic engineering to alter sexual orientation?
• The moral considerations of using animals in the production of medicine.
• Should we use genetic engineering to enhance artistic abilities?
• The ethical implications of using animals in the production of vaccines.
• Should we allow for the creation of artificial consciousness?
• The moral considerations of using animals in the meat industry.
• Should we use genetic engineering to alter personality traits?
• The ethics of using animals in the production of dairy products.
• Should we use genetic engineering to alter behavior?
• The moral implications of using animals in the production of eggs.
• Should we use genetic engineering to alter physical appearance?
• The ethical considerations of using animals in the production of honey.
• Should we use genetic engineering to alter emotions?
• The moral implications of using animals in the production of silk.
• Should we use genetic engineering to alter memory?
• The ethics of using animals in the production of wool.
• Should we use genetic engineering to alter moral behavior?
• The moral considerations of using animals in the production of leather.
• Should we use genetic engineering to alter consciousness?
• The ethical implications of using animals in the production of cosmetics.
• Should we use genetic engineering to alter intelligence?
• The moral considerations of using animals in the production of fur.
• Should we use genetic engineering to alter perception?
• The ethics of using animals in the production of meat.
• Should we use genetic engineering to alter empathy?
• The moral implications of using animals in the production of dairy.
• Should we use genetic engineering to alter creativity?
• The ethical considerations of using animals in the production of eggs.
• Should we use genetic engineering to alter autonomy?
• The moral implications of using animals in the production of honey.
• Should we use genetic engineering to alter consciousness in animals?
• The ethics of using animals in the production of silk.
• Should we use genetic engineering to alter emotions in animals?
• The moral considerations of using animals in the production of wool.
• Should we use genetic engineering to alter memory in animals?
• The ethical implications of using animals in the production of leather.
• Should we use genetic engineering to alter moral behavior in animals?
• Should we use genetic engineering to alter intelligence in animals?
• Should we use genetic engineering to alter perception in animals?
• Should we use genetic engineering to alter empathy in animals?
• Should we use genetic engineering to alter autonomy in animals?
• Should we use genetic engineering to alter consciousness in plants?
• Should we use genetic engineering to alter emotions in plants?
• Should we use genetic engineering to alter memory in plants?
• Should we use genetic engineering to alter moral behavior in plants?
• Should we use genetic engineering to alter intelligence in plants?
• Should we use genetic engineering to alter perception in plants?
• Should we use genetic engineering to alter empathy in plants?
• Should we use genetic engineering to alter autonomy in plants?
• Should we use genetic engineering to alter consciousness in microorganisms?

These 102 bioethics essay topic ideas and examples should provide you with a great starting point for your bioethics essays. Remember to research each topic thoroughly, consider different perspectives, and always approach these ethical dilemmas with empathy and critical thinking. Happy writing!

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Bioethics: Key Concepts and Research

Two experts in bioethics have curated a reading list of over 20 JSTOR sources on selected issues like: gene-editing, research and treatment, reproduction, disability, genetics, genealogy and race.

Bioethics is a field of inquiry centered around the uses and moral implications of medicine and the bio-sciences. Scholars and researchers come from a very wide variety of professional and disciplinary backgrounds, like medicine, nursing, law, theology, philosophy, history, and other humanities and science disciplines. They employ a range of methodological and theoretical approaches to investigate questions of policy, practice, and meaning in an increasingly technical and medicalized world.

The American biochemist Van Rensselaer Potter is widely credited with introducing the term “bioethics” into the academy in his 1971 book Bioethics: Bridge to the Future . The term “bioethics” was not immediately embraced, though. In fact, neither of the world’s first bioethics research institutes— The Hastings Center (where we work), which was founded in 1969, or The Kennedy Institute of Ethics, founded in 1971—initially used “bioethics” in their names or to describe their work.

The early U.S. national commissions that focused on bioethics issues also shied away from the term. Since the mid to late-1990s, however, the word has become more widely accepted. Bioethics centers can now be found in a growing number of medical schools around the world, many countries have national bioethics commissions, and bioethics courses and degrees are offered in colleges and universities.

This list of essential readings in bioethics is designed to introduce readers to the breadth of writing in the field. Some of the pieces address questions foundational to the field—about reproductive rights, research with human subjects, end -of-life care, and organ donation. Others, such as those about gene editing ancestry testing, consider long standing ethical issues raised by emerging technologies. This list is of course partial and, like the field thus far, has an Anglo-American focus. A relatively young field, bioethics is still expanding its methods and scope.

Theoretical Perspectives

• Albert R. Jonsen et al., “ Special Supplement: The Birth of Bioethics .” The Hastings Center Report (1993).

In 1992, 42 bioethicists who had been active in the field since its inception came together to take stock of what bioethics had accomplished and how it had changed. Warren Reich, a founder of the Kennedy Institute of Ethics, offers a history of the term “bioethics” and the ambivalence that some prominent bioethicists feel about that word.

• James F. Childress and John C. Fletcher, “ Respect for Autonomy .”  The Hastings Center Report (1994).

Following revelations of unethical research in the Tuskegee Syphilis Study , a US national commission released a major report, known as The Belmont Report , summarizing the ethical principles for research involving human subjects. These principles—respect for autonomy, beneficence, and justice—were further developed in Tom L. Beauchamp and James F. Childress’ book Principles of Biomedical Ethics , which is still taught in nearly every introductory bioethics course. In this article, Childress and John Fletcher describe the ascension of one principle—respect for autonomy—which they argue deserves a central place in ethical deliberations but must also be tempered by other moral concerns, including care and compassion.

• Ann Bradshaw, “ Yes! There Is an Ethics of Care: An Answer for Peter Allmark .”  Journal of Medical Ethics (1996).

Writing as a teacher of nurses, Ann Bradshaw offers historical and modern interpretations of the idea of “caring” that form the basis for an ethic of care. She understands care to not be a value-neutral project, but rather as drawing normatively and descriptively from feminist and religious thought, guided not only by altruism but also by a pursuit of justice.

• Carl E. Schneider, “ Bioethics in the Language of the Law .”  The Hastings Center Report (1994).

Schneider argues that moral reasoning within bioethics is often undertaken using legal concepts and language. Law can offer bioethics a rich language and a tool for action, but the social regulatory function of the legal system can also prove inadequate for fully evaluating moral obligations.

• Munyaradzi Felix Murove. “ African Bioethics: An Explanatory Discourse .”  Journal for the Study of Religion (2005).

All bioethics is, as this paper notes, culturally conditioned. Western frameworks, which shape much of the scholarship represented in this list, cannot fully describe the contours of ethical reasoning in other cultures. This paper develops an African bioethics that begins with an appreciation of the role of traditional healthcare practices.

Selected Issues in Bioethics

End-of-life care.

• Daniel Callahan, “ Death: “The Distinguished Thing” .”  The Hastings Center Report , 2005.

Death, and the myriad ways that dignity may or may not attend it, is one of the enduring themes of bioethics. Daniel Callahan, widely regarded as an originator of the field (and one of the founders of The Hastings Center) asks how we ought to think about the relationship between caring for the dying and the nature of death itself by examining the historical ways that those two concepts have been both conflated and separated.

Defining Death

• Seema K Shah, Robert D Truog, and Franklin G Miller, “ Death and Legal Fictions .”  Journal of Medical Ethics (2011).

Advances in life-sustaining treatment and in transplantation medicine have challenged understandings of the definition of death. The introduction in the 1980s of the concept of “brain death” sought to resolve both legal and moral dilemmas by providing additional scientific criteria for determination of death. Shah, Truog, and Miller argue that these changes have created a legal fiction, whereby organs for transplantation are being procured from still-living donors.

Research on Human Subjects

• Charles W. Lidz, and Paul S. Appelbaum. “ The Therapeutic Misconception: Problems and Solutions .”  Medical Care (2002).

Clinical research forms the backbone of medical progress, but history is fraught with ethical lapses and oversights that have imperiled human research subjects. One enduring problem is known as the “therapeutic misconception,” in which patients confuse the goals of research and treatment. While medical care is focused on helping a specific patient and is tailored to their needs, research is designed primarily to produce generalizable knowledge, not primarily to help the research subject. This misconception can prevent research subjects from fully appreciating the risks of research or the possibility that they might receive an unproven treatment or even a placebo.

• Nancy E. Kass, Ruth R. Faden, Steven N. Goodman, Peter Pronovost, Sean Tunis, And Tom L. Beauchamp, “ The Research-Treatment Distinction: A Problematic Approach for Determining Which Activities Should Have Ethical Oversight .”  The Hastings Center Report (2013).

Since the 1970s, scholars have argued for distinguishing research from treatment, so as to avoid confusion like that described by Lidz and Appelbaum above. The authors of this paper note, however, that distinguishing research from treatment too definitively occludes the fact that for some patients, participation in research is part of their treatment, especially when their illnesses are rare or lack well-established courses of therapy. Thus, adequately protecting patients requires rethinking the research-treatment distinction.

Medical Error

• Nancy Berlinger, “ Avoiding Cheap Grace: Medical Harm, Patient Safety, and the Culture(s) of Forgiveness .”  The Hastings Center Report (2003).

Medical errors account for a remarkable number of injuries and deaths. After medical error, patients and families can feel pressure to forgive healthcare providers. Nancy Berlinger argues though that automatic forgiveness amounts to “cheap grace” –it is individual, rather than systemic; a forgiveness achieved without the participation of the injured party; aimed at ending uncomfortable or sad encounters rather than preventing further harm from happening. It asks those who have been harmed to merely ‘do the right thing’ – to forgive, rather than demand change or recompense from those who have erred.

Reproductive Technology

• Eva Feder Kittay, “ Planning a Trip to Italy, Arriving in Holland: The Delusion of Choice in Planning a Family .”  International Journal of Feminist Approaches to Bioethics (2010).

New technologies, particularly reproductive ones, purport to offer an ever-expanding range of choices: about if and when to procreate, about who will be genetically related to new offspring, about what kind of health a baby will be born into. Choice is highly valued in many Western cultures, and is strongly defended in much bioethics scholarship. But, Eva Kittay cautions, “choice is not always what it seems and too often it promises what it cannot deliver.”

• John A. Robertson, “ Procreative Liberty and the Control of Conception, Pregnancy, and Childbirth .”  Virginia Law Review (1983).

John Robertson argues for an expansion of reproductive freedom beyond the right to access contraception and abortion to include the right to access new reproductive technologies. This additional freedom, which he calls “procreative liberty,” amounts to an additional negative right –the right to be free from government interference in the use of technology to aid reproduction .

• Judith Jarvis Thomson. “ A Defense of Abortion .”  Philosophy & Public Affairs  (1971).

Debates about abortion infuse many contemporary issues in bioethics. The pro-life argument against abortion is typically premised on the notion that a fetus is a person from the moment of conception. Judith Jarvis Thomson offers a defense of abortion that, contrary to the way the argument usually goes, accepts that premise, using an extended allegory to locate the moral permissibility of abortion instead in the right of the pregnant woman to decide what should happen in and to her body.

Gene Editing

• Brendan P. Foht, “ Gene Editing: New Technology, Old Moral Questions .”  The New Atlantis (2016).

Gene editing technologies such as CRISPR-Cas9 are only the latest in the evolution of increasingly precise ways for humans to modify genes. These technologies raise longstanding moral and ethical questions about setting limits, heritable and non-heritable genetic changes, consent, and gratitude. This piece concludes with a pro-life perspective on therapeutic gene editing in humans.

Organ Donation

• Thomas H. Murray, “ Gifts of the Body and the Needs of Strangers .”  The Hastings Center Report  (1987).

Blood and organ donation raise some of the classic distribution problems in medical ethics: what would a fair matching system look like? Are personal behaviors, or factors such as immigration status, disqualifying? Should donors be compensated for their gifts? In this piece, Thomas Murray considers the context of the “gift” of bodily donations and argues for resisting commercialization.

Disability Rights

• Tom Shakespeare, “ Debating Disability .”  Journal of Medical Ethics (2008).

Tom Shakespeare is well known for complicating the distinction between the “medical” and “social” models of disability. The former suggests that disabling traits produce disability, while the latter sees disability as caused by a world unwilling to accommodate people living with different sorts of bodies. Responding to criticism of his book, Disability Rights and Wrongs, Shakespeare details how the field of disability studies can overcome “crude dualism, the better to understand the complex dialectic of disability.”

Enhancing Human Traits

• Erik Parens, “ Authenticity and Ambivalence: Toward Understanding the Enhancement Debate .”  The Hastings Center Report  (2005).

Many scholars and policymakers have attempted to draw lines between permissible and impermissible uses of biotechnologies by distinguishing between uses that amount to treatments and those that result in enhancement of human traits. Erik Parens reflects on how different notions of authenticity – whether we should primarily be grateful for what we’ve got or creative about improving ourselves – complicate the treatment-enhancement debates.

Genetics, Genealogy, and Race

• Alondra Nelson, “ Bio Science: Genetic Genealogy Testing and the Pursuit of African Ancestry .”  Social Studies of Science (2008).

Do genetic ancestry tests ‘geneticize’ racial and ethnic identities? Drawing on ethnographic research conducted with American people of African descent, sociologist Alondra Nelson examines the use of genetics by African Americans who have been cut off from their ancestry due to slavery.

LGBTQ People and Medicine

• Jamie Lindemann Nelson, “ Medicine and Making Sense of Queer Lives .” Hastings Center Report , (2014).

Queer people have had a long and uneasy relationship with the medical establishment, which has by turns offered much-needed care and prejudicial or pathologizing treatment. Noting that medicine extracts a good deal of cultural legitimacy from its “touch of the transcendental,” Jamie Nelson explores the ways that receiving a diagnosis associated with queer identity, such as gender dysphoria, can impact self-understanding.

• Solomon R. Benatar, Abdallah S. Daar, and Peter A. Singer, “ Global Health Ethics: The Rationale for Mutual Caring .”  International Affairs  (2003).

In our world of staggering and increasing global inequality, bioethics offers insight into how global health needs to be improved by focusing on respect for the dignity of all people and promoting a conception of human flourishing that goes beyond individualistic economic concerns.

• Zahra Meghani and Lisa Eckenwiler, “ Care for the Caregivers? Transnational Justice and Undocumented Non-Citizen Care Workers .”  International Journal of Feminist Approaches to Bioethics  (2009).

Significant numbers of undocumented workers, often having migrated from the Global South to wealthier nations, are employed as domestic care workers for aging populations. This paper offers insight into some of the injustices these workers confront.

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• BOOKS AND ARTS
• 13 August 2019

From reproduction to the right to die: bioethics now

• Eric J. Topol 0

Eric J. Topol is professor of molecular medicine at Scripps Research in La Jolla, California.

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Calls for universal US health coverage under Medicare face challenges, such as the fact that end-stage kidney disease consumes 7% of its budget. Credit: Bill Clark/CQ Roll Call

Everybody Wants to Go to Heaven but Nobody Wants to Die: Bioethics and the Transformation of Health Care in America Amy Gutmann & Jonathan D. Moreno Liveright (2019)

The term ‘bioethics’ was coined in 1926, yet the field itself did not emerge until the 1970s. Although my 1975 university thesis (Prospects for Genetic Therapy in Man) reviewed ethical concerns, it took a further four decades before gene therapy was successful in people. More recently, some developments in biomedical technology have accelerated beyond moral or principled boundaries. Among the most shocking was last November’s revelation that the premature and reckless application of human-embryo genome editing had given rise to twin babies in China. That led to calls for a global moratorium (see Nature 566 , 440–442; 2019 ).

Amy Gutmann and Jonathan Moreno have long been at the heart of bioethics debates, and served together for seven years on Barack Obama’s Presidential Commission for the Study of Bioethical Issues. Their book Everybody Wants to Go to Heaven but Nobody Wants to Die (its title is borrowed from a country-music song) reviews the field’s evolution and status.

To begin, Gutmann and Moreno each recount a personal flashback to an older era of ethically problematic medical care. Gutmann’s grandmother and Moreno’s mother underwent medical amputations; neither had been given crucial information by her doctors, so both were uninformed at the time of crucial therapeutic decisions. The authors then tour ethical dilemmas throughout the human life cycle, ranging from reproductive rights to the right to die.

Brain in a dish, babies by design: what it means to be human

Many of the stops along the way delve into familiar territory — required reading for clinical researchers, and the basis of annual online-testing requirements for conducting clinical research. For instance, the authors cover the infamous, decades-long Tuskegee syphilis study, in which the US Public Health Service withheld penicillin from hundreds of African Americans with the illness. And they discuss the case of Jesse Gelsinger, who died in 1999 from misguided gene therapy intended to treat the rare metabolic disorder ornithine transcarbamylase deficiency.

The authors are not shy about expressing their liberal views, many of which I share. For instance, they declare that health care is a human right, and they believe that people should have the freedom to access safe and legal abortions.

Against a background of calls for “Medicare for All” by several Democratic Party presidential hopefuls, Gutmann and Moreno discuss this government-run, taxpayer-funded health insurance scheme. Covering US citizens aged 65 and older and signed into law in 1965, Medicare was extended in 1972 to include all people with end-stage kidney disease, irrespective of age or demographic. The full costs of dialysis are now footed for more than 500,000 US citizens at a cost of more than US$30 billion a year. And care for end-stage kidney disease consumes approximately 7% of the Medicare budget.

This federal carve-out has fuelled for-profit dialysis centres nationwide. Ultimately, it has caused a lack of financial support for an untold number of people with other conditions, including some with haemophilia or with one of many rare diseases for which treatments are costly and often involve injectable speciality drugs. This demonstrates the problem of providing health care for everyone affected by just one condition, as well as the economic implications of coverage for all in a country that has the highest medical expenditure per person in the world.

Replacing faulty mitochondrial DNA in embryos is allowed under UK, but not US, law. Credit: Zephyr/Science Photo Library

Despite their vast experience and wisdom, the authors make important errors. One pertains to mitochondrial-replacement therapy. The powerhouses of our cells, mitochondria contain only 0.1% of our DNA, but mutations in that genetic material (known as mtDNA) can be the root cause of rare diseases transmitted from mother to child. To counter this potential when a prospective mother has such mutations, another woman without the mutation can provide donor mtDNA amounting to 0.0005% of the embryo’s genome. Gutmann and Moreno write that, in 2016, the United States gave the green light for male embryos to be given the treatment. In fact, the procedure is still banned by the US Food and Drug Administration, although Britain legalized it in 2015. The authors also erroneously indicate that angiograms — X-rays of blood vessels — can support diagnoses of brain death in people in persistent vegetative states.

A major theme throughout is that patients have more agency and authority today than they once did, and can even co-produce their care, sharing key decisions with their doctors. But the authors’ proclamation that there has been “a collapse of medical paternalism” is off-base. Unfortunately, paternalism is still pervasive. As I noted in my 2014 book, The Patient Will See You Now , some 66% of US doctors will not give patients their office notes, and almost all order routine medical scans without telling the recipient how much exposure to ionizing radiation the tests entail.

There are also key omissions. I was surprised to see no mention of non-invasive prenatal tests, which have accurately identified the potential for fetal chromosomal abnormalities for more than one million prospective parents in the United States. They do not discuss ongoing clinical trials using induced pluripotent stem cells to treat medical conditions such as macular degeneration, Parkinson’s disease or spinal injury. They barely mention the ‘brain in a dish’ approach to neurological research involving human cortical organoids, which is attracting considerable attention from bioethicists. And devoting just a handful of sentences to CRISPR genome editing of human embryos and subsequent births seems remiss.

That’s the way the CRISPR crumbles

Nor do they mention one of the most controversial bioethics incidents in recent years. In 2015, the cognitive psychologist Steven Pinker wrote in the newspaper The Boston Globe : “Biomedical research will always be closer to Sisyphus than a runaway train — and the last thing we need is a lobby of so-called ethicists helping to push the rock down the hill.” Inevitably, bioethicists pushed back at this declaration that they are a kind of guild, a bureaucratic industry entangled in a conflict of interest. It’s a shame that Gutmann and Moreno don’t tackle this frontal assault. The moral compass that bioethicists provide is necessary: all too often, technology is out in front of the deep thinking we need about how it can be best applied.

Indeed, bioethics is often pivotal in educating clinicians about patient care at academic medical centres. That brings me to the concept of casuistry: thinking about ethical problems by assessing a spectrum of cases to which they apply. The book stresses that careful analysis of a case can promote insight.

I experienced this at first hand on my rounds as attending physician in an intensive-care unit. I and my team of medical students and trainees cared for many people facing death. We had to consider ‘do not resuscitate’ orders, and discovered how best to discuss the delicate situation with patients and their families. No one was more thoughtful while weighing in than the bioethicists. When they were absent, there was a sense of loss: we missed their clarity. Whether in the context of an individual patient, a medical-research initiative or the application of new advances, the field of bioethics is essential. We will continue to rely on these professionals for guidance.

Nature 572 , 308-309 (2019)

doi: https://doi.org/10.1038/d41586-019-02412-y

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• Published: 07 March 2015

A systematic review of empirical bioethics methodologies

• Rachel Davies 1 ,
• Jonathan Ives 2 &
• Michael Dunn 3  

BMC Medical Ethics volume  16 , Article number:  15 ( 2015 ) Cite this article

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Despite the increased prevalence of bioethics research that seeks to use empirical data to answer normative research questions, there is no consensus as to what an appropriate methodology for this would be. This review aims to search the literature, present and critically discuss published Empirical Bioethics methodologies.

MedLine, Web of Science and Google Scholar were searched between 15/02/12 and 16/06/13 to find relevant papers. These were abstract reviewed independently by two reviewers with papers meeting the inclusion criteria subjected to data extraction.

33 publications (32 papers and one book chapter) were included which contained 32 distinct methodologies. The majority of these methodologies (n = 22) can be classed as either dialogical or consultative, and these represent two extreme ‘poles’ of methodological orientation. Consideration of these results provoked three central questions that are central to the planning of an empirical bioethics study, and revolve around how a normative conclusion can be justified, the analytic process through which that conclusion is reached, and the kind of conclusion that is sought.

When considering which methodology or research methods to adopt in any particular study, researchers need to think carefully about the nature of the claims they wish to generate through their analyses, and how these claims align with the aims of the research. Whilst there are superficial similarities in the ways that identical research methods are made use of, the different meta-ethical and epistemological commitments that undergird the range of methodological approaches adopted rehearse many of the central foundational disagreements that play out within moral philosophy and bioethical analysis more broadly. There is little common ground that transcends these disagreements, and we argue that this is likely to present a challenge for the legitimacy of the bioethical enterprise. We conclude, however, that this heterogeneity ought to be welcomed, but urge those involved in the field to engage meaningfully and explicitly with questions concerning what kinds of moral claim they want to be able to make, about normative justification and the methodological process, and about the coherence of these components within their work.

Peer Review reports

This paper reports a systematic review of methodologies related to a particular kind of empirical bioethics (EB) research – specifically, methodologies that seek to use empirical data about stakeholder values, attitudes, beliefs and experiences to inform normative ethical theorising.

‘Empirical bioethics’ is a generic and broad term increasingly used to describe a particular kind of research endeavour that seeks to ask and answer questions of bioethical interest in a way that draws on the strengths of both philosophical and empirical analysis [ 1 - 4 ]. Its ‘rise’ can, in part, be seen as a response to the social science critique of philosophical bioethics, as described by Hedgecoe [ 5 ], which challenges what is seen as ‘traditional’ philosophical bioethics to become more contextually aware and more grounded in the realities of lived experience. In the context of this review we are, therefore, particularly interested in looking at methodologies that seek to use social scientific data (usually about stakeholder attitudes, beliefs and experiences) to inform and enhance ethical analyses of topics of bioethical interest.

Even thus specified, the term ‘empirical bioethics’ is commonly understood to refer to a wide range of varying methodologies that have different views about how best to respond to the challenge of connecting normative bioethical analysis to the realities of lived moral experience. There is considerable uncertainty about the range and substance of these methodologies, and there remains a difficulty in trying to articulate their aims and content. One standard response has been to articulate typologies that differentiate between different kinds of research endeavour, and a number of useful typologies have, to date, been put forward to describe how philosophical theory and data can be combined [ 6 - 10 ]. DeVries [ 6 ], for example, offers a four-part typology that distinguishes between practical research strategies that: (i) use empirical data to describe attitudes toward an issue; (ii) use empirical data to explore the likely or actual consequences of bioethical policies and decisions; (iii) use empirical data to explore the ‘implicit normativity’ in scientific/clinical practice, and (iv) use empirical data to understand the institution of bioethics.

An alternative, and quite different, typology is offered by Molewijk et al . [ 9 ] , who distinguish between different kinds of research strategy by reference to the locus of moral authority in order to clarify how best to arrive at a normative conclusion. Their typology differentiates between four research strategies that: (i) give complete authority to moral theory, and only use empirical data to provide evidence for premises or support factual claims; (ii) give precedence to moral theory but accommodate a one-way relationship between theory and data such that empirical research can be used to refine theory; (iii) give equal authority to both theory and data, such that both theory and interpretation of data can be adjusted in light of the other, and: (iv) remove theory altogether from ethical analysis and focus only on the particulars, which are identified through empirical research.

These typologies of general research strategies are useful because they begin to carve out the field according to what a piece of research might seek to achieve, and helpfully distinguishes between various ways of thinking about the research endeavour. What they do not do is explore the detail of, and differentiate between, different methodologies that fall within each of those strategies. A useful addition to this field would be, therefore, a systematic review of the methodological variation within these strategies. We note that systematic reviews in the field of bioethics are relatively rare, although their use is increasingly proposed [ 11 , 12 ]. The rationale for conducting a systematic review, as opposed to the narrative reviews that we can find in the literature to date, are, as Strech and Sofaer point out: “to reveal a greater range of…information than the informal reviews …that are usual in bioethics and philosophy, which sample literature using unsystematic, undocumented search methods to the unspecified point at which it seems to the author (often the only author) that [nothing new emerges]” [ 11 ], p122.

This paper reports a systematic review focussing specifically on methodological strategies that seek to draw normative conclusions through the integration of social scientific empirical data collection/analysis and normative/ethical theorising. This might best be thought of as falling within Molewijk et al's . [ 9 ] category of both Critical Applied Ethics or Integrated Ethics , and which we describe simply as being ‘integrative’. This integrative approach seems to offer the best chance, at least in theory, of genuinely accessing the strengths of both the empirical and the philosophical contributions, and through our engagement with the field to date we felt that it is the approach that has received the most methodological attention, is the most heterogeneous, and is most in need of systematic review. In addition, the report from the first workshop of the UK based Interdisciplinary and Empirical Ethics Network (IEEN) [ 13 ], concluded that there are important questions to ask about, inter alia :

What kinds of normative conclusions empirical bioethics ought to be aiming for, suggesting that “[t]he debate over whether their research seeks objective and universalisable answers, or more subjective and particularist answers, is perhaps best worked out locally given the particular aims and agendas defined in each research project”. [ 13 ] p160.

The way that empirical bioethics seeks to provide justification for its conclusions, stating that “The fundamental question concerning justificatory authority - how we can articulate why and how our conclusions can be considered better, or worse, than anyone else’s – remains unresolved”. [ 13 ] p160.

Our focus on this kind of integrated empirical bioethics is, ultimately, premised on our personal interest in pursuing and developing methodologies for bioethics research that take seriously the empirical and the contextual, but which are also concerned with producing normative conclusions and justification for those conclusions. That is not to say this is the only kind of legitimate bioethics activity – only that it is the activity we are primarily concerned with and interested in. It is also a research strategy of central importance to the field of bioethics that has been well-recognised by other scholars as being in need of further development, reflection and scrutiny [ 14 - 16 ]. Other reviews of different kinds of empirical bioethics activity would undoubtedly be a welcome addition to the literature and give rise to different theoretical and methodological implications.

With this in mind, this review aimed to:

Identify the number and range of published ‘integrative’ empirical bioethics methodologies available.

Explore differences and similarities between those published methodologies, with a view to identifying and discussing key questions about aims, analytic process and justification that differentiate between different kinds of methodologies.

The initial search for this review was conducted between February and March 2012. The review was conducted in accordance with the Cochrane guidelines [ 17 ] a . Three databases (Google Scholar, Web of Science and MedLine) were searched, up until 16/03/2012. These three databases were chosen because we found that, between them, they indexed all the kinds of journals in which our target papers were likely to be published. Given the time and resource restrictions on the project b , we made a conscious decision to use databases that would index likely journals; i.e. those that publish papers around the nexus of medicine, healthcare, ethics, philosophy and research methodologies.

Broad search terms were used to allow for the wide variation in terms we knew to be present in the literature, with a separate set of terms to ensure that only papers including a methodology were returned. The most significant difficulty we had lay in the fact that there is no agreed terminology used to label this kind of research endeavour, and so we aimed to develop a very wide and inclusive search strategy. Numerous scoping searches were performed using Google Scholar to select terms that were able to identify relevant papers without turning up thousands of papers that were irrelevant. The initial search terms, developed after scoping searches, were:

(“Empirical Bioethics” OR “Evidence Based Bioethics” OR “Interdisciplinary Bioethics” OR “Empirical Ethics”)

(Methodology* OR Method* OR Process*)

This produced approximately 1240 search results, of which 37.5% of the first 150 passed title screening.

When applied to MedLine, however, this search produced only 19 results of which 18 passed title screening. This indicated that our search terms were sensitive to keywords used on Google Scholar but not MedLine. The search was therefore extended to include additional and, arguably, less technical terms, that seemed likely to capture papers that talked about relevant methodologies without naming them. These additions increased the sensitivity of the search in Medline, and had no significant effect in Google Scholar. The final set of search terms used were:

(“Empirical Bioethics” OR “Evidence based bioethics” OR “Interdisciplinary bioethics” OR “Empirical Ethics” OR “Social sciences perspectives on bioethics” OR “Empirical Research in Bioethics” OR “Empirical-Ethical Research” OR “”Ethics-Related Empirical Research”)

Truncations were used to cover the second phase of the search in order to include all forms of the words. Both ‘methodology’ and ‘method’ were used, to allow for the fact that some authors may refer to the overriding process as a ‘method’.

No limits were placed on the publication date, meaning that any relevant papers, regardless of publication date, would be found. A small secondary search was also performed using existing bibliographies of EB literature c and by searching the references of included papers.

Search results were title screened by RD for relevance, followed by abstract review against the inclusion criteria (see List of Criteria for inclusion into review). Multiple papers by the same author could be included, as could publications not exclusively aimed at bio ethics if they met all other criteria d . Abstract review was performed independently by two reviewers (RD and JI), who rated the papers as either ‘accept’, ‘reject’, or ‘unclear’. Both reviewers met to compare their independent reviews. All abstracts for which there were concordant ‘agree’ reviews were accepted for data extraction. All papers for which there was a concordant ‘reject’ review were eliminated. In the case of disagreement, or when either reviewer was unsure, the entire paper was screened followed by the same review process. Included papers were subjected to data extraction using a pre-formed data-extraction sheet, which recorded details on aims, methods and epistemological/philosophical assumptions (see List of Headings from Data Extraction sheet).

List of criteria for inclusion into review

Paper or book chapter

Written in English

Discusses concept of ‘EB’, even if the phrase itself isn’t used

Details a methodology

Aims to draw normative conclusions (not just description, sociological analyses or gathering data to support factual premises in argument)

Does not have to specifically deal with bio ethics if the methodology is transferrable

List of headings from data extraction sheet

Title of paper

Name of methodology

Stepwise procedure given/Overarching process described (tick boxes)

Linear/Cyclical/Iterative/Other or none (tick boxes)

Aim of the research/conclusion

Details of data collection method

Data analysis method given (if not provided why not/what is said about data analysis)

Details of method for developing normative outcomes

Philosophical commitments stated/implied

Social scientific commitments stated/implied

Theories in opposition and why: Author stated/reviewer

Strengths and weaknesses- Philosophical: Author stated/Reviewer identified

Strengths and weaknesses- Practical: Author stated/Reviewer identified

Other notes

The extracted data were then used to categorise the methodologies, with the aim of identifying similarities and differences in the processes used and grouping them according to those similarities.. These process categories were then scrutinised to see if further sub-categories were warranted.

In May 2013 the search was repeated to update the results with a view to publication. The same search terms, databases, screening methods and inclusion criteria were used as in the initial search. This search was limited to show only results published since 2012 to minimise the number of duplications from the original search. Again, a secondary search of included papers’ references was undertaken, as well as any recent additions to EB reading list and bibliographies. Methods of review and data extraction were performed as described above.

Interpretation and analysis

Data extraction allowed the key methodological characteristics of each paper to be identified and summarised, which helped us begin the interpretive process of categorisation. The papers were then initially categorised and sub-categorised on the basis of the methodological process they use. On occasion, multiple papers, often by the same authors, discussed the same processes and these were combined to remove duplication. One paper described three different methodologies. This resulted in the identification of 32 distinct methodologies, spread across 33 different papers.

The categorisation of papers was driven by our a priori focus on methodology; and our analysis was directed towards looking for methodological similarity and dissimilarity and, at least initially, informed by the workshop report on the IEEN (13), which called for more information on justification, process and aims. Our data extraction sheet mirrored differences that we had observed in the literature - for example, was the research process cyclical, linear or iterative? Whilst this helped us to structure our initial thinking, those three categories were not ultimately useful, as they did not fully capture what we felt were the key aspects of the methodologies that were included.

The categories and subcategories we ended up using were generated through a process of reflection and induction. After data extraction was complete, RD, JI and MD met to discuss how to categorise the 32 methodologies, and agreed on an initial two-way categorisation that distinguished between ‘dialogical’ and ‘consultative’ approaches, based on a fundamental difference. These two categories arose naturally from the data, as the methodologies tended to either generate normative conclusions with participants through a dialogue, or generate normative conclusions after consulting with participants in some way. We then attempted to place each methodology into one of those categories, and then considered whether those methodologies that did not clearly fit into either category provided evidence that the two categories were wrong, or that these categories needed to be extended. On closer examination, a few methodologies seemed to encompass elements of both categories, and some were clearly neither dialogical nor consultative but had nothing sufficiently in common to generate a new meaningful category. A similar reflective and inductive process was then used to examine methodologies within each category, leading to the consultative category being split into more specific groupings that shared a common and distinctive methodological characteristics.

A total of 36 publications were initially selected for data extraction. Three were then excluded for not meeting the inclusion criteria, having been included on abstract alone, leaving 33 publications included (see Table  1 ). The PRISMA diagram in Figure  1 depicts the search and screening process over the two searches conducted.

PRISMA diagram combining both search periods.

Figure  2 (below) illustrates the way the included methodologies were categorised. The majority of the methodologies outlined in these publications (n = 22) can be classed as either dialogical or consultative, and these represent two extreme ‘poles’ of methodological orientation. Three methodologies appear to use a combination, or could use either. On one pole we find Dialogical approaches, which are based around the formation of a dialogue between stakeholders and the attempt to reach a shared understanding, in which the analysis, and reaching of a conclusion, is undertaken by the researcher and participants together. These approaches generally aim to find a resolution to a discrete problem. On the other pole we find Consultative approaches, which tend to utilise an external ‘thinker’ who gathers data and analyses it independently of the data collection process, and then develops normative conclusions. Essentially, this approach ‘consults’ with participants to obtain their views and experiences, but participants do not take part in the process of forming a normative conclusion. In consultative approaches the data can be gathered in any number of ways and may come in many different forms, and the aims of consultative approaches, vary; ranging from theory development to the generation of concrete answers to discrete problems.

Categories illustrating methodological processes.

The consultative group was highly varied and could be further sub-categorised according to the process used by the ‘thinker’ (or the researcher). Within the consultative group, five methodologies propose a form of Wide Reflective Equilibrium (RE), and five describe non-RE coherence based methodologies. Eight methodologies were less clear about the consultative process (or method) of drawing normative conclusions - describing a non-specific ‘thinking- through’ (our term). Within this latter group there is considerable variation in where the locus of authority is placed. Four give data priority over theory, one gives theory priority over data, and three give equal weight to both.

Finally, seven methodologies are neither clearly dialogical nor consultative, and three methodologies (pragmatic hermeneutics, deliberative democracy and integrated empirical ethics) may comprise elements of both.

The two poles of methodological orientation that we have used to categorise the majority of methodologies are useful in the sense that they provide a very general way of thinking about how a normative conclusion can be reached. In Dialogical approaches, the ethical analysis and reaching of a normative conclusion is part of the research encounter itself. Reaching consensus, in one form or another, plays a significant role here, with moral authority generated, for example, through a hermeneutic ‘fusing of horizons’ [ 18 ], or democratic mandate [ 19 ]. By contrast, consultative approaches involve explicit engagement with stakeholder views, but with the ethical analysis being undertaken post-engagement, by the researcher or the research team. In these latter accounts, stakeholders feed into the ethical analysis, but are not involved in it directly. Moral authority, in these approaches, is more likely to come from theoretical soundness.

Distinguishing between these two poles of methodological orientation fails, however, to accommodate the significant differences within the orientations themselves. The consultative orientation, in particular, includes a wide range of divergent methods which assume different epistemological and meta-ethical commitments. What this variation illustrates, quite strikingly, is not only the wide variation in methods, but also the attendant variation in the aims and epistemologies associated with these methods. Different methodologies produce different kinds of knowledge, such that the epistemological status of the conclusions arising out of, for example a project using ‘inter-ethics’ will be quite different from a project using ‘deliberative democracy’, ‘symbiotic bioethics’ or a ‘network model with third person moral experience’. Consequently, how normative conclusions are justified – the source of moral authority - will be different in each, which will affect the grounds upon which any conclusions can be accepted.

Considering the results of the systematic review, we feel that there are three further questions that are immediately provoked by the data presented above and the broad differences we have observed across the methodologies identified. These questions revolve around how a normative conclusion can be justified, the analytic process through which that conclusion is reached, and the kind of conclusions that are sought. In the remainder of this paper we outline those questions and discuss, briefly, their relevance and importance.

How a normative conclusion can be justified: can moral justification be found through consensus or coherence?

This question mirrors a general philosophical debate around what justifies claims to moral knowledge, or to knowledge in general. In-depth engagement with this question may require immersion in philosophical and sociological epistemology, philosophy of science and theories of truth, which we do not have space for in this paper. The main point we are trying to make, here, is that there is a long tradition of philosophical thought that deals with these questions of justification, knowledge and truth, and a commitment to any specific empirical bioethics methodology is likely to involve aligning oneself with a particular epistemology about how a claim to moral knowledge can be justified.

A research method that appeals to consensus to justify a normative conclusion finds moral authority in agreement of some kind. Some ‘dialogical’ methods rely on hermeneutic philosophy to explain how this agreement works, appealing to a ’fusion of horizons’ premised on achieving a shared understanding and interpretation of the world. These methods rely, broadly speaking, on accepting the view that a process of dialogue can lead to people understanding the world in the same way, which leads to agreement on the correct solution. Many dialogical methods are based on facilitating that dialogue e.g. [ 18 ], and that facilitation comprises the empirical and ethical research project. The normative conclusion generated through that dialogical process becomes the findings of the research. Alternatively, some approaches seek a different kind of consensus: one based on a political philosophical claim about democratic authority rather than a meta-ethical claim about shared interpretation and moral knowledge [ 19 ]. Agreement, here, is not the basis of justification but, rather, justification flows from the legitimacy of the democratic processes invoked to draw normative conclusions.

Conversely, a research method that appeals to coherence finds moral authority, broadly speaking, in rationality and consistency. The difficult question that needs an answer is what ‘coherence’ means, what it looks like, and what has to ‘cohere’ with what. One option is coherence with moral theory, and a conclusion is coherent if it fits, logically, with a particular theoretical viewpoint. This is one traditional (analytic) philosophical approach, which an integrative empirical bioethics would tend to reject due to the lack of attention it accords to the contingent features of ‘real-world’ settings. An alternative option is that coherence may be found between data and theory (as in narrow reflective equilibrium) or between a number of relevant considerations (as in wide reflective equilibrium). A research method that draws on coherence will tend to involve some process of balancing, where a coherent position is found between the various relevant considerations.

Many of the consultative approaches identified are based on coherence, the majority of which explicitly refer to wide reflective equilibrium, and seek to find a balance (an ‘equilibrium’) between, for example: background theories, moral principles, morally relevant facts, moral experiences of others, considered moral judgements of the ‘thinker’ e.g. [ 20 ]. This method gives all the considerations listed equal weighting, with none having greater epistemic authority than any other. An alternative methodology that draws on coherence, reflexive balancing [ 1 ], rejects the notion that all considerations have equal epistemic status and uses empirical data to posit ‘quasi-foundational moral principles’ around which coherence is built; where coherence is sought between mutually supporting principles and claims. In yet another contrasting position, the three methodological approaches put forward by Dunn et al. [ 4 ] interpret coherence with reference to argumentative standards in ‘real-world’ practical reasoning, rather than in terms of any alignment between moral theory and empirical facts. Here, the purpose of the research is to develop normative claims in which there is coherence between universal standards of justification for convincing arguments of all kinds, and relevant contextual considerations that enable agents to be convinced to act in line with the requirements of these arguments.

The analytic process through which that conclusion is reached: should we prioritise the thinker, the theory or the stakeholders?

One of the most fundamental questions that must be considered is who, or what, should be doing the substantive analytic work in empirical bioethics research. Broadly speaking, in the methods and methodologies identified above we find three possible answers to this question.

First, a methodology where the thinker does the work is reliant upon a single central person (or sometimes central team). This would usually be the researcher, or the research team, who takes the analytic burden and whose judgement is central to the analytic process. Any normative conclusions belong to that ‘thinker’ (or group of thinkers), and a different, but similarly robust and coherent, thinker (or thinkers) could reach a different conclusion, and this may impact on how the conclusions are presented, requiring, perhaps, a certain amount of reflexivity see [ 21 ]. In our sample of included methodologies those that prioritise the thinker tend to be consultative, and these include all the methodologies that draw on reflective equilibrium.

Second, a methodology that prioritises the theory still requires a person to conduct the analysis, but the focus is on the logical and consistent development and application of theory, such that the theory dominates the normative analysis. This kind of method wants to generate conclusions that, once the theory is agreed upon, would be binding for all rational agents (or, at least, all rational agents who subscribe to that theory, thus expressed). In doing this, the ‘correct’ theory is identified in advance, and one’s normative conclusions would be the result of how the theory is applied, given the contingencies of the empirical data that is taken into account. It is noteworthy that some methodologies, for example Frith’s ‘symbiotic bioethics’, attempt to use data to help refine theory, and then apply that more contextualised theory to the problem in hand (rather than deciding on the theory in advance of the research process). Other methodologies, such as Borry et al ’ s ‘step wise empirical contributions’ [ 22 ] aim to input empirical data into various stages of the ethical decision making process, but use the data to support argument defined by theory that is not subject to revision after considering the data.

Third, a methodology that prioritises the stakeholders does away with the central role of the thinker or theory. Instead, the analysis is the product of a group process that connects a broad range of voices to link relevant practical experiences to ethical considerations in a range of differently structured facilitative processes (e.g. discussion groups, interviews). In doing this, the role of the researcher is less central, and becomes more one of facilitation and process than substantive analytic contribution – such as in the dialogical methods identified in our review. The researcher does not generate or own the normative conclusions, but rather discovers and communicates the conclusions reached through the research process (whether that is stakeholder dialogue, democratic consensus, or any other kind of process).

The kind of conclusion that is sought: should we aim for particularity or generalisability?

The extent to which we might want our conclusions to be particular to a specific time and context, or more universally applicable, will have a significant bearing on the method we choose. Methodologies that prioritise abstract theory may have a better claim to drawing universalisable conclusions than methods that tie an analysis to a specific dataset or a specific group of people. Methodologies that prioritise the particular [ 23 ], for example, or which seek a dialogical consensus between a specific group of people, may have difficulty drawing conclusions that go beyond that particular problem or context. One way of understanding such approaches may be to frame them as action research, with the specific aim of evaluating and changing a discrete area of practice rather than making general claims about ethics. Other methods, for example [ 2 ], explicitly aim to use empirical studies to inform and develop generalisable theory, which can then be applied in other contexts.

If we wish to conduct research that is focussed on a very specific problem, and are not concerned with making generalised moral claims, we need a method that will accommodate this narrow focus. Similarly, if we wish to be able to make universal moral claims, we need a method that either accommodates large scale generalisible empirical research, or that has a process for moving from the particular to the generalisible by way of theory generation, and which has an attendant meta-ethics that we can defend (or at least explain). This question, and the one above, tracks very closely debates in moral philosophy over particularism vs. universalism, and the debate around moral relativism. These debates are concerned respectively with whether or not one can make moral claims that apply universally, and whether or not a moral judgement can only be correct relative to the context about which it is made or the person who made it. Clearly, however one answers the two methodological questions above, one is making a claim about these debates, and making a statement about which meta–ethical view is correct.

Limitations

Before drawing our final conclusions, we need to reflect on the limitations of this review. First, while our search strategy was robust, it is likely that some relevant papers have been missed because our search terms were not as refined and focused as they might have been. The range of different terminology used in this field is significant, and our choice of search terms was based on our existing familiarity with the literature. It is possible that there are papers in existence that are highly relevant that nonetheless use terminology that we are not familiar with. Should those papers exist, our search terms are unlikely to have captured them.

Second, we have been unable to include, or search for, non-English papers, meaning that our review is limited to English language publications. We are aware that there are groups and individuals working on empirical bioethics methods across Europe and beyond, and we have only been able to capture their English language papers. Many people working on this topic may not have published in English at all, and it is a limitation that this work could not be included.

Third, and finally, our analysis and subsequent classification is based on our own (systematic) interpretation of the field, and cannot be considered to be the last word. We feel that our categorisation of the papers identified in the review offers a useful way to look at the strategies, methods and methodologies in empirical bioethics, and through that we have highlighted some specific questions that we feel are important to consider when choosing a methodology. However, the questions we have interrogated are by no means exhaustive or defining of the field.

It is important to recognise that the questions we have asked above, about consensus/coherence, particularity/universalizability, or who/what takes analytic priority, are all interconnected. They concern central questions of normative justification that no empirical ethicist can afford to ignore, and have significant implications for the design of empirical ethics studies. If one is going to design an empirical ethics study correctly, methodological decisions must be responsive to the different theoretical positions that underpin alternative approaches to empirical ethics research. When considering which methodology or research methods to adopt in any particular study, researchers need to think carefully about the nature of the claims they wish to generate through their analyses, and how these claims align with the aims of the research. In disseminating these claims, moreover, researchers must also be able to articulate and defend one or more of these positions in order to convince their audiences about the veracity and scope of the normative conclusions they draw.

The pressing need to engage with these kinds of question is highlighted by increasing calls for more public engagement in policy relevant ethical deliberation. A good example of this is the recent Nuffield Council on Bioethics working party on emerging biotechnologies, which calls for a ‘public discourse ethics’. This report [ 24 ], in chapter 4, discusses the virtues and benefits of engaging the public in these policy debates, such as candour, sustainability, equity, accountability (mirroring the kind of language used to talk about patient and public involvement in health and policy research more generally), but does not consider how this can be achieved, and seems to take for granted that it is (a) possible and (b) methodologically unproblematic.

The observations made in this paper highlight the fact that this kind of methodology is anything but unproblematic. Even within the relatively narrowly defined ‘integrative’ approaches to empirical bioethics that we have focused on, there is little in common between the various traditions of empirical ethical enquiry that we have identified. Whilst there are superficial similarities in the ways that identical research methods are made use of, the different meta-ethical and epistemological commitments that undergird the range of methodological approaches rehearse many of the central foundational disagreements that play out within moral philosophy and bioethical analysis more broadly. There is little common ground that transcends these disagreements, and the disparate nature of the methodological literature arguably makes it difficult to view empirical bioethics as a coherent (and ultimately legitimate) research enterprise. It has not developed as a cohesive body of work with a shared intellectual heritage and agreed standards, as one might see in an established discipline or methodological tradition. Rather, it has emerged as a body of work comprising distinct and entirely bespoke methodological responses to a ‘problem’ that is not always clearly defined, or understood in the same way.

In our view, the heterogeneity we have observed is not a problem in itself. Difference adds to the richness of the field and, certainly in its infancy, a field such as empirical bioethics will surely benefit from experimentation and variety. The methodological and epistemological differences we have seen, even within the narrow scope of ‘integrative’ approaches, are no more trenchant than the differences we might observe, for example, within the social sciences, and the differences seem to reflect legitimate theoretical disagreements over the purpose and nature of ethical enquiry.

This does, however, make it difficult, if not impossible, to critically assess a piece of empirical bioethics work with reference to anything outside of the work itself. The fact that the emerging literature tends to focus on developing and articulating methodologies that are bespoke to particular sets of questions, in a particular context, makes it difficult to look at a piece of work from an external perspective and assess its quality, because all of the justificatory work has to be done almost from scratch to validate that piece of work. The nature of this (early) work is that it is experimental, creative, and crosses disciplinary boundaries, and there is not an established canon of literature that can be referred to. A pioneer, if we might use that analogy, has to go it alone.

When we consider these characteristics alongside the requirements of funding and publication, and the (understandable) imperfections of peer review, it is not difficult to see how work in empirical bioethics could struggle to find a place. The shortcuts that can be taken when explaining and justifying work undertaken within clear disciplinary silos are not available to empirical bioethics. There is no standard approach to cite, there is no accepted methodology or set of methods to fall back on, and the process of offering justification for every methodological choice from first principles takes a lot of space, which is rarely available.

One way forward may be to attempt to find some level of consensus on what is required of an empirical bioethics methodology, and what standards we might use to assess the quality of work proposed and/or undertaken under this broad umbrella. Establishing a consensus that outlines areas of agreement may be able to provide some external and relatively concrete validation for at least some kinds of work. Such areas of agreement might include, for example: what assumptions one may legitimately make, and whether the theoretical assumptions behind one’s approach need to be stated, explained or fully justified (from first principles).

Our concern about that kind of solution (aside from the, perhaps obvious, difficulty of reaching a consensus), is that the field may not be mature enough to put any of these questions to bed, and given that it would be damaging to the legitimacy of the empirical bioethics endeavour to try to avoid them.

For now, our view is that everyone working in this field must live with a great deal of uncertainty, and will have to work hard to explain what they are doing and why it ought to be taken seriously. If we are trying to do a new kind of ethics, using new kinds of methodologies, then we should be put under pressure to justify and articulate that new approach clearly. At this stage in the development of empirical bioethics, that means engaging explicitly and meaningfully with questions concerning the kinds of moral claim that empirical bioethicists want to be able to make, about normative justification and the methodological process, and about the coherence of these different components of their work. So long as this is done, the evident heterogeneity doesn’t matter, and should in fact be welcomed.

a The Cochrane handbook is intended to be used for systematic reviews of interventions. In light of this not all stages were relevant.

b The project was carried out as an undergraduate student project, with a strict time limit and limited resources.

c Bibliographies were supplied by JI and MD, which were generated for teaching purposes.

d Background reading suggested a body of literature on methodologies within business ethics which could also be relevant to this research.

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Acknowledgments

We would like to thank the four reviewers who gave us very insightful and constructive feedback on the paper. This work was supported/funded (in part) by the intercalated Population Sciences and Humanities course at the University of Birmingham.

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Competing interests.

Two of the authors of this paper [JI and MD] are also authors or co-authors of three of the papers reviewed in this study. However, the authors believe that the systematic inquiry undertaken in this paper is transparent, reproducible, and sufficiently neutral.

Authors’ contributions

All authors contributed to the design of the review. RD undertook the primary review work for an undergraduate student project, under supervision of JI and MD. RD produced the first draft of the paper, which was extensively redrafted by JI with significant input from MD. All authors read and approved the final manuscript.

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RD is an FY1 doctor who undertook this research as part of her intercalated degree in Healthcare Ethics and Law at The University of Birmingham, UK. JI is a Senior Lecturer in Bioethics at the University of Birmingham, and MD is a Lecturer in Health and Social Care Ethics at Oxford University.

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Davies, R., Ives, J. & Dunn, M. A systematic review of empirical bioethics methodologies. BMC Med Ethics 16 , 15 (2015). https://doi.org/10.1186/s12910-015-0010-3

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MyBioethics: How Ed-Tech Enables Discovery-Driven Empirical Bioethics Research

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• Joel Janhonen   ORCID: orcid.org/0000-0003-0696-7987 1 , 2 ,
• Mikko Värttö   ORCID: orcid.org/0000-0002-8772-7872 1 , 2 &
• Heikki Saxén   ORCID: orcid.org/0000-0002-7432-1160 1 , 3  

Digital tools have granted new opportunities to engage people with bioethical discussion and rehearsed decision-making. The ongoing development of the MyBioethics mobile application links these together within a digital space designed to encourage deliberation and research participation by inviting users into the process of discovery. Besides educational purposes, this has enabled a unique way to gather real-world observations. A research procedure was designed to harness the functionality of a mobile application. Quantitative data was generated by dilemma scenarios and integrated surveys that measure and inform users about their psychological and epistemic tendencies. The resulting analysis enabled the possible influence of these factors on moral judgment formation to be investigated—leading to the preliminary identification of prospective relationships. The adopted methodology is crowdsourced and explorative. We seek to generate hypotheses as well as facilitate ethical reflection among users. This work is a proof-of-concept. The main finding is the tentative confirmation of the approach. A digital teaching tool can function to advance empirical bioethics research. The gathered data unveiled prospective areas of academic interest and yielded observations that may contain valuable reflective insights for individual end users. Digital bioethics brings along new opportunities to engage a diverse user base in a way that provides educational resources, challenges ethical preconceptions and intuitions, allows inclusion in research efforts, and encourages autonomous decision-making. Ed-tech applications appear suitable for investigating personal tendencies that are influencing our moral judgments. Digital environments could be designed to surface unarticulated factors behind our held positions and challenge unquestioned moral notions.

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1 Introduction

The information age has provided bioethicists with new digital methods to engage people in education and interactive deliberation (Schneider et al., 2023 ). Prior empirical research has indicated that interactive and visual teaching tools that provide a pleasing user experience can be effective in supporting bioethics learning (Sleigh et al., 2023 ). New learning environments designed to take advantage of this effect can provide favorable circumstances for passing on information as well as increasing users’ deliberative and moral competencies. We consider the capacity of strangers to make sense of difficult topics a crucial aspect of social health and believe that this can be greatly diminished or built up by digital technology.

Combining text, audio, and visual information can improve both engagement and knowledge acquisition by promoting motivation while managing the extraneous cognitive load of digital learning (Skulmowski & Man Xu, 2022 ). Teaching tools that take advantage of the functional potential and ubiquity of smartphones surely have a role to play in the effective dissemination of bioethical ideas, concerns, and proposed solutions in society. Yet, rather than designing applications to channel information only one way, we propose cultivating joint efforts with participants so that they can share their observations and have a sense of involvement and ownership in bioethical efforts.

A recent turn in empirical bioethics research has sought to take advantage of digital methods and acquire new research competencies to generate insights (Salloch & Ursin, 2022 ). Besides facilitating online public spaces for the exchange of ideas, digital bioethics can involve the design of research functionality that can be embedded in these learning environments. Data streams generated from user interactions can be analyzed for the purposes of scientific exploration. This would enable a more accessible form of empirical ethics research that can be both community-centric and largely automated.

Within the ongoing MyBioethics mobile application project, the set-up of an online in-app research procedure has resulted in the identification of novel connections between personal tendencies and expressed judgments. Here, we demonstrate the research capacity with some preliminary findings. We hope to generate interest in digitally supported teaching and connected research as well as initiate discussion about improving cross-disciplinary collaboration for content generation and data analysis. Discovering unexpected relationships between ethical decisions and measurable constructs of epistemic, intuitive, and analytical cognition can generate new hypotheses worthy of further investigation. Once considered relevant, these constructs and their respective questionnaires can expand the toolkit of empirical bioethics.

1.1 MyBioethics 101

With the MyBioethics mobile application, users can learn about bioethical dilemmas and express their perspectives through voting. The app adopts a game-like function with completable levels combined with an interactive capacity for facilitating communication with fellow users. The foremost objective is to teach bioethics by introducing any English-speaking person with a smartphone to ongoing discussions concerning a wide variety of topics. These include both practical ethical dilemmas encountered in real life, as well as more theoretical thought exercises. MyBioethics functions to raise public awareness of ethical challenges connected to health care, biotechnology, and the environment. In general, it aims to increase users’ capacity to deliberate and make informed decisions regarding bioethical issues, helping each to enrich and revise their perspective, and so discover their voice. Besides providing tools and resources for rational deliberation, the content can challenge initial moral intuitions by making underlying psychological factors visible.

This mobile application was developed through a collaboration of Finnish bioethics researchers and international colleagues. At the time of writing, MyBioethics is available in 74 countries and has over 650 registered users. This will extend to cover the United States once institutional challenges have been resolved.

1.2 User Experience

The first time the application opens, it directs a new user to create an account. Thus far, the country of residence has been the only collected background information. A voluntary more fleshed-out user profile is under consideration, yet we do not wish to get fixated on demographic groups or factors like gender and age. The created username functions to link all user activity, enabling the analysis of generated data.

After completing registration, users are free to choose from a growing selection of lesson modules, listed in Table  1 . Once selected, users can either read or listen to the slides that introduce them to the topic at hand. Each lesson includes multiple dilemma scenarios that provide possibilities to participate by voting on what one considers to be the more ethical alternative. Once an answer has been submitted, the app will disclose the vote tally and give the user a chance to elaborate on the expressed judgment. Besides an open forum for written comments there are also Likert scales available to report the self-perceived moral certainty and significance of the selected answer. Users also have the option to disclose the decisive issue that most significantly influenced their vote from a list of general options—including considerations like autonomy and justice—or by suggesting a unique rationale.

In addition to lessons, the app includes a selection of standardized survey measures for dispositional orientations and other psychological and epistemic tendencies that might influence ethical decision-making. Once completed, the displayed average and score distribution will help users compare their thinking and intuition with that of others. User-friendly information enables them to reflect on the significance of the measured tendency—e.g., for optimism—for their personal sense of right and wrong. The purpose of these surveys is two-fold: to enable discovery-driven research on bioethical decision-making and to inform users on found connections so they can personally assess how much this factor played a role in their vote. Finally, the app encourages the user to reflect on whether this potential influence would even make sense or be ethically justified.

2 Intended Employment

This project seeks to establish an engaging online portal for moral deliberation and provide insights that enable users to carefully consider their positions on bioethical questions. Dilemmas are designed to involve citizens in societal sense-making by voicing their opinions and uncertainties. Many of the lessons assess issues related to policy and public health while incorporating considerations important to individuals. We plan to broadcast the vote tallies and other findings on our social media. Footnote 1

While much of society’s attention is pointed toward digital content, it is sensible to create online spaces that embrace the improved connectivity and functionality allowing one to comfortably voice opinions, elaborate, respond, and possibly even participate in research. Rather than scattering this attention and undermining user autonomy (Zimmerman et al., 2023 ), the content on MyBioethics is designed to maintain focus on the task at hand. By encouraging users to devote time and effort to developing their ethics skills, we in turn seek to enhance their decision autonomy.

Public bioethics has traditionally utilized means of deliberative democracy, including citizens’ juries (Moore, 2010 ; Street et al., 2014 ). As the objective of MyBioethics is to also prioritize broad participation and democratize knowledge-making, the project is likely to take on a life of its own as it matures. It is impossible to fully predict how any educational technology will be used in practice (Selwyn, 2010 ). Yet, the technical design impacts whether the application exaggerates social conflict or provides a more self-reflective user experience. For interpersonal online interactions to be high quality, instructional for users, and supportive of learning, the design of these experiences needs to be purposeful and informed by research (Mehall, 2021 ).

Rather than seeking unanimity that brings the conversation to its end, digital bioethics should facilitate open and high-quality processes of deliberation that encourage the pursuit of the common good. Members of our online jury are encouraged not merely to agree with the group or get bogged down in first impressions but to consider the motivations behind their reasoning. Learning how to arrive at convincing justifications is not all that ethics has to offer. Besides rational and deliberative talents, awareness of guiding intuitions, personal dispositions, and implicit judgments is also worth cultivating.

Ethical questions will forever keep surfacing in people’s lives and pull a segment of them to investigate moral concepts, theories, and notions more systematically. We consider the possession of deliberative tools and executive control over moral judgments more important than being fully immersed in every bioethical conversation. Without having to involve politics or other categories of group identity, app users can discover deep personal factors that inform their judgments. These can assist them in formulating a concept of themselves as certain kinds of ethical thinkers. Diverse lessons, perspectives, and dilemmas challenge them both through rational arguments as well as by shining a light on their “gut reactions.” We hope to provide suitable challenges for those who enjoy effortful thinking—while not forgetting those who prefer avoiding cognitive overload. Users are not only interrogated for their views but welcomed into active roles as storytellers and citizen researchers.

2.1 Teaching

While MyBioethics aspires to allow self-learning and self-discovery, it also has functions that enable it to be effectively used with more traditional teaching. For students of applied ethics, medicine, nursing, and biosciences, the app can illustrate real-life ethical dilemmas that users are likely to encounter as professionals. The case examples are primarily intended to be practical even if supported by diverse theoretical knowledge, while a minority are more hypothetical and seek to kindle the user’s imagination.

Moral learning should be viewed as a complex psychological process (Schlaefli et al., 1985 ). Rather than focusing on judgment alone, moral motivation and other component processes should be considered in the design of educational tools. This can encourage students to more comprehensively deal with morally challenging and distressing situations. Exploring and getting familiar with diverse perspectives aids one to better sense nuances that may turn out to have unexpected ethical relevance in a case under consideration.

As they are adopted, digital tools may make ethics education more self-driven compared to being directed by a teacher. However, an online learning environment cannot replace important aspects of on-campus learning and should remain a supplementary resource—exceptional circumstances aside (Shirazi et al., 2022 ). A recent study found that online discussions of real-life dilemmas can increase students’ ability to justify their choices (Juujärvi & Myyry, 2022 ). Importantly, increases in ethical sensitivity and motivation were also noted. We wish to reproduce these outcomes using MyBioethics among Finnish University students but focus more on online self-learning. In future work, we seek to demonstrate the app’s pedagogical value as a tool for improving deliberative competencies, while not excluding moral imagination and intuition.

So far, the app has been actively used during three university courses for first- and second-year students. More recently, it was also tried out with doctoral students who were attending a research ethics course. Observations from its previous use have indicated that MyBioethics can complement more traditional teaching methods. Dilemmas that students consider before each lecture can function as starting points for classroom discussions where they can voice their votes, elaborations, and comments. Student feedback on the app has been promising and broadly positive.

To broaden the scope of bioethics learning in the future, those who wish to raise awareness, disseminate educational information, provoke discussion, inquire about opinions, or apply a more critical perspective should use and co-develop such digital hubs. In the future, online learning and deliberation can be further enriched by the inclusion of surveys, quotes, guidelines, game elements like quizzes, and creative art projects that mix science, ethics, and artistic expression.

2.2 Exploring

Dilemma vote tallies are just the surface of the empirical angle. Through MyBioethics, we hope to uncover cross-disciplinary research interests, allowing bioethics to interact with diverse fields and gain more prominence. These engagements could pinpoint easy-to-measure factors that appear to influence ethical decision-making. Besides granting new tools for identifying cross-personal differences and conflicting ethical priorities, this research could be framed as the discovery of undertones that make up individual voices, each having their part to play in enriching societal conversations. For this reason, tendencies that have no obvious normative preferences about them, like the sense of relationship with nature, were integrated into the application. Supposing that these differences influence moral judgments, such alternative outlooks would each appear valid and promote healthy pluralism.

In the spirit of academic collaboration and knowledge sharing, we welcome collaborations with researchers and institutions that share our desire to engage the public in deliberation and increase moral awareness and motivation. Joining forces can only enhance the depth and breadth of our investigations, allowing for richer insights and broader applications in the field of bioethics. Such collaborative endeavors could be made to benefit future scholars. Graduate and doctoral students who have authored theses might find opportunities to transform these works into lesson modules as well as use data or preliminary findings in their research.

Continuous low-cost empirical research could be carried out using these platforms. Digital learning environments like MyBioethics could also function as alternative low-barrier publishing channels for preliminary findings. Footnote 2

3 Driven by Discovery

The research effort that has been built around the functions of the MyBioethics application represents an exploratory methodology. This means that there are no guiding hypotheses, rather the research aims to generate them. The relationships between the explored variables are unknown to the research team and its members avoid being guided by expectations (Schwab & Held, 2020 ). This approach to research is generally considered preferable when the aim is to “find the unexpected”. For the present method, prior assumptions play only a modest role in the selection of surveys. When employing pre-developed questionnaires or other quantitative instruments, exploratory research benefits greatly from automated data processing. Digital research instruments are hence used to freely probe for connections between data items: vote, survey score, country, certainty, etc. When a survey gets multiple preliminary ‘matches’ from different dilemmas, this enables the identification of topics or themes that are shared between the dilemma scenarios, finally leading to the generation of a hypothesis.

The ongoing shift toward a more open science framework is changing who can partake in bioethical research (Lyreskog et al., 2022 ). Purpose-built digital applications can provide ethicists with new opportunities to engage and involve the public in the ongoing global ethics conversations and the investigation into mechanisms of moral judgment. MyBioethics meets the proposed definition of crowdsourced science by involving a self-selected group through an open call to undertake tasks in a collaborative online process to generate scientific knowledge (Lenart-Gansiniec et al., 2022 ).

Many ethically relevant issues can feel overwhelming in the polarized information environment; competing discourses rarely encourage independent voices. To prevent public demoralization, bioethics should embrace participatory and deliberative approaches that empower people to freely discover and try out their values, intuitions, preferences, and concerns. Ethical complexities and pluralism of opinions should not be considered overwhelming but an enriching part of being a human in the information age.

3.1 Theoretical Underpinnings

The prevailing view in moral psychology perceives intuitive cognition and emotional processing as essential to moral judgment formation (Brand, 2016 ). Rather than basing our opinions on rational arguments, people largely intuit whether something is wrong and rationalize to support and make sense of this moral feeling (Haidt, 2001 ). These can be thought of as implicit mental influences distinct from explicit conscious reasoning. To truly understand answers given to ethical dilemmas, instead of only considering rationales, ethicists should explore this moral sense. Many classic bioethical topics, from abortion to animal testing, evoke strong emotional responses. Investigating the formation of moral judgments can therefore benefit from the arsenal of instruments designed to measure relevant dispositions. A specific mindset or inclination to feel a particular way can result from the unconscious side of cognitive processing. Such factors can stay hidden from us, even while being prominent tones of our ethical voice.

While discussing methodologies for different forms of bioethics research, Ives and Draper propose measuring “lay intuition” to allow researchers to identify topics that the public perceives as morally acceptable or significant and so integrate empirical data with philosophical models ( 2009 ). Instead of screening intuitions to primarily inform social policy or ethical theory, we wish to outline some significant features of the moral sense so that the insights of moral psychology can be brought to bioethics. Only digital technology can facilitate both the non-stop gathering of non-expert responses and the dissemination of arising instructive discoveries. Designed tools could advance the theoretical accounts by testing them against the streams of data on moral judgments.

Factors responsible for pulling and pushing our moral intuition generally escape articulation and thus can be hard to argue against. However, social intuitionism should be considered as a set of descriptive, rather than normative claims. A discovery-driven attempt to generate insights about the moral sense could also facilitate critical self-reflection. By identifying prominent sways that affect bioethical decision making, we hope to provide app users with an opportunity to override the initial judgment with reason or encourage perspective-taking that may lead to the discovery of competing intuitions (Haidt, 2001 ). Post-hoc rationalizations can give space to self-critical rational deliberation once the implicit factors are made visible. Even if non-rational, intuitions should not be invariably considered something to discard and detach from, but individually assessed for their moral merit. Unconscious intuitive cognition appears to have dominion over moral responses and snap judgments. However, future intuitions can become informed and modified by prior conscious reasoning and empathizing (Pizarro & Bloom, 2003 ). Deliberation has relevance in interrogating our moral feelings.

3.2 Mapping the Layout of Decision-Landscape

Uncovering connections across dilemma scenarios and exploring whether these could be partly explained by measured personal dispositions constitutes an empirical attempt to demystify moral intuition. Findings would not only support the intuitionist thesis but also provide new venues for prospective research. Factors underlying our intuitions likely inform and frame our perspective on diverse questions even if these would not directly dictate our ethical positions. At least regarding topics that generally evoke strong emotions, the development team expects to find statistically significant differences in selected psychological and epistemic measures. Assessing subjective proclivities toward things like nature might uncover diverse factors that notably move people in matters of morality, while factors of epistemic cognition can provide more general descriptions of the user’s relationship with intuition, rationality, and ethical knowledge (Knight, 2020 ). Effect sizes are not likely to be strong with any single factor, so a more comprehensive model may be compiled with multivariable regression analysis or neural networks. Early attempts at using these have been encouraging.

Possible relationships across surveys are also monitored. This can ensure that a single underlying disposition is not inadvertently measured twice using overlapping instruments as well as increase knowledge of these constructs and their relationships with each other. Life experiences undoubtedly shape our views, but without completely altering the inherent dispositions of our minds. Unlike our ever-changing mood, features of our personality and surveys that measure these generally demonstrate good temporal invariance. These likely have a greater influence on experience than vice versa. Yet, if these scores were linked with key life events, like moving to X, graduating from Y, or becoming a parent, this would call into question their stability across the lifespan. The impact of past experiences on dilemma answers or survey scores would clearly be impossible to satisfactorily map out and analyze with brief surveys. However, some significant determinants of life experience, like birth order position or sex, might be worth including in the voluntary user profile.

3.3 Related Approaches and a Unique Angle

The Moral Sense Test project by Harvard’s Moral Psychology Research Lab has employed a similar approach to empirical ethics research (Morgan & et al., 2015 ). Presently in the data collection phase, this research also uses online crowdsourcing and hypothetical examples to study moral intuitions. The approach includes psychological measures like the disgust scale—developed by Haidt and colleagues ( 1994 ). In total, this testing website has six integrated surveys and no direct parallels to the factors selected for MyBioethics. Another example is the YourMorals website which primarily uses the Moral Foundations Questionnaire based on the respective theory (Dehghani et al., 2007 ). Additionally, this online research portal collects extensive demographic information, has an emphasis on political psychology, and includes one of our selected surveys, Need for Cognition, which measures satisfaction experienced from effortful thinking (Iyer et al., 2012 ).

For our project, contextual dilemma scenarios provide an opportunity to see the measured tendencies in action. Research functionality is integrated into an appealing learning environment, so participation is intended to feel more like exploring a digital science center than filling out a form. The selection of surveys for MyBioethics is partly informed by the explored themes and issues, exemplified by the inclusion of the Nature Relatedness survey. The presently integrated measures are displayed in Table  2 . A periodically updated list with prospective additions can be found on our website.

These types of original online investigations have demonstrated the capacity to explore the landscape of moral psychology from unique angles by screening candidate dispositions for their weight in moral judgments. Besides enabling a more comprehensive learning experience and participatory exploration, we wish to bestow users with personal insights and moments of moral realization. The findings are screened, and the hypotheses are generated, mainly with the user in mind. For MyBioethics, uncovering and challenging initial judgments is more important than testing or building meta-ethical theory.

4 Preliminary Findings

Some information on empirical findings is included to illustrate the research capacity of MyBioethics. Once an adequate set reaches the confidence level against type one error, we will consider publishing our exploratory results in a journal focused on moral psychology. Some dilemma descriptions are presented ahead in addition to the statistical information to provide examples of tentative influences and prospective hypotheses. Yet, the main findings are the observations about crowdsourced bioethics research with a digital tool.

4.1 Uncovering Influences

A total of nine preliminary connections between ethical dilemmas and measured personal factors are displayed in Table  3 . Footnote 3 Positive correlation value, a hypothetical positive relationship, means that a user with a higher survey score has an increased likelihood of having selected option A for the dilemma. For example, users who report having a stronger sense of connection with nature are generally more opposed to the legalized selling of non-vital organs according to the second dilemma of the Commodification lesson set. By itself, a correlation does not mean much, but when combined with a low probability value and a considerable sample, these associations become more interesting.

4.2 Analyzing Observations

Here we illustrate two preliminary connections to Nature Relatedness. Figure  1 displays the answer distribution of these dilemmas in relation to survey scores. In both cases higher tendency was associated with answer option B. Abbreviated dilemma questions can be found in Table  4 . In the app, each case is presented with more detailed descriptions which are not included here. These dilemmas are presented to demonstrate the process of generating an exemplary overarching hypothesis, which could provide a uniting explanation for these observations. Again, exploratory results like the ones outlined here can only generate hypotheses, never confirmations.

Example dilemma answers by nature relatedness. A quantile box plot presenting Nature Relatedness (0–24 points) in relation to answers given to the dilemma examples. A and B are the answer options. Healthcare Autonomy #2 is on the left and Commodification #2 is on the right. For both, the score distribution connected to option B is visibly higher

Individuals with a strong sense of connection with nature could have their moral sense tilted against “unnatural acts” or perceived violations against nature. So, decision making regarding an excessive and ultimately unwinnable struggle against a genetic illness and the selling of body parts could well be influenced by this factor. For someone who feels part of or protective of the natural order, it is easy to see how technology-driven disruptions to the original, unsullied, or “intended” state of affairs can spark negative intuitive reactions. This disposition to feel a certain way might therefore carry a normative charge. Thus, hypotheses for future research could include: The sense of connection with nature predisposes one to generally value the quality of naturalness over other considerations or be suspicious of human interference and to commit the naturalistic fallacy when justifying ethical decisions. The way that the natural state gives people ideas about how the world ought to be has received interest both from ethicists and psychologists (Brinkmann, 2009 ). Whether non-moral factors of environment and biology can have objective moral weight will remain in question, yet these factors most likely have subjective sway over our judgments—to a varying degree.

However, so far users opposing organ markets have still generally been slightly more likely to honor the patient’s wishes in the dilemma about healthcare autonomy. The user’s need for cognition also appears to factor in this decision likewise increasing the likelihood of voting for refusal as the score gets higher. Both these points illustrate that nature relatedness is just one factor among many—pushing against other dispositions and considerations.

To explore these and other dilemmas in detail, the app is available for download at the MyBioethics website. We welcome any attempts to formulate, test, and confirm hypotheses based on our exploratory research findings. The development team is pleased to share anonymized data if requested by our fellow academics.

5 Discussion and Limitations

The open science movement has brought up some challenges regarding empirical research that uses crowdsourced data collection. While collaborative initiatives help to improve access and participation, they can come at a risk of blurring the distinction between exploratory and confirmatory research (Nilsen et al., 2020 ). Discovery-driven approaches that lack an experiment protocol cannot—and should not—be used to produce conclusive evidence. Both systematic generation and structured testing of hypotheses are necessary for attaining confidence in the results. Even though our exploratory method produces quantitative data, its findings should be considered indicative. We also highlight this point for our users. MyBioethics development team encourages other researchers working on similar collaborative platforms to clearly make the distinction between explorations and attempted confirmations. We also encourage them to be forthcoming about the sought-after outcome of their research method.

5.1 Generalizability and Priming

Naturally, we do not have selective control over users filling out surveys, answering lesson dilemmas, or installing the application in the first place. So far, the sample consists largely of Finnish university students, which certainly raises concerns about the general applicability of findings. Although we have the necessary functionality to perform cross-country (or -institution) analysis, the results will unavoidably be biased in favor of people interested in bioethics as well as willing and able to try out a digital tool.

The self-selection of lessons and surveys contributes to biases in both distributions and associations of data. However, because the objective is to uncover the influence of relatively stable personal dispositions, the confounding effect of most demographic differences should be relatively modest. Joining together research and information dissemination also inevitably predisposes to the priming effect, which may distort the signal, yet without completely falsifying it. Despite the noise, a statistically promising finding notes that further exploration—or confirmation—should be considered.

5.2 Potential Impact on Intuitions

Although subsequent confirmatory research should test all worthwhile hypotheses and establish causal relationships, we can make well-founded guesses about the causal direction based on prior theory. At least the social intuitionist model sees the link between intuition and judgment as only unidirectional (Haidt, 2001 ). In turn, personal reflection and social persuasion are perceived as capable of impacting intuitive judgments. Therefore, reflective insights may play a greater role in adjusting our moral notions than extensive argumentation. Uncovering and exploring implicit intuitive structures can be advantageous for developing a self-concept, even without breaking away from prior judgments. Although we aim to provide these insights to users through displayed findings and so unlock contradicting intuitions, the dispositions underlying epistemic and normative activity are likely to endure. Factors that might help to fill in the effect of social persuasion should be also considered and possibly included in the future.

5.3 Risks of Exploration

Due to its loose and open-ended design, exploratory research is known to sometimes generate false-positive findings, especially when the results are selectively reported. To counter this, we display a periodically updated table of all calculated correlations, probabilities, and sample sizes on our website (automatically calculated with Microsoft Excel). If any survey measure demonstrates discrepancies in relation to a given topic or theme, this undermines any supposition or proposed explanation founded on it. For this article, it makes sense to display only a few strong preliminary findings to illustrate the exciting prospect of uncovering connections across diverse topics.

The risk that a researcher retrospectively creates a hypothesis to fit the observed data or merely adjusts a broader theory to accommodate it should be considered whenever conducting or consuming this type of research. As the data continuously cumulates and tunes the findings, it may be difficult to decide exactly when it should be analyzed and published. A predetermined quota or scheduled updates may prevent picking the timing based on preferred values. Footnote 4 For MyBioethics, any revised findings are promptly visible to active app users.

Overall, it appears that digital tools can perform a variety of research functions to advance empirical bioethics while expanding the field in the direction of open science. After importing standard methods and tools from other fields while first growing into an empirical discipline (Hurst, 2010 ), bioethics could further grow its reach and impact by again expanding its toolkit. However, the roles should remain methodologically clear and play to the strengths of each respective application. New functionality may provide more flexible study designs, but this variety should not confuse the criteria by which evidence is evaluated. Methodological concerns should be addressed so as not to undermine the scientific rigor of empirical or digital bioethics (Hurst, 2010 ).

Within an increasingly digital and interconnected society, it is important to acknowledge differences in the reliability of voices, sources, and methods while also recognizing the value of diverse vantage points. Yet, rather than being limited by the demands and required expertise of hypothesis testing, more participatory science should be driven by discovery and facilitated by digital technology. We highlight that this work is primarily a proof-of-concept of what is likely to follow in the arena of digital bioethics.

In this article, we introduced a unique online environment designed to enable bioethics learning, deliberation, and reflection. Foremost, our work supports the view that digitally mediated methods can be useful in bioethics communication. Teaching applications that use dilemma scenarios to illustrate ethical challenges and trade-offs can also advance exploratory ethics research. The work contributes to the literature by providing a method description of bioethics research conducted via mobile application, including some preliminary findings. The approach is informed by trends in moral psychology and in turn works to operationalize related theory in the era of digital bioethics. A broad variety of expressed moral judgments together with briefly surveyed personal dispositions enables automated data discovery and the statistical identification of prospective relationships. Disciplines of applied ethics can obtain a better understanding of prevailing societal disagreements by identifying key factors guiding individuals’ moral judgment formation.

Besides effective information dissemination, a digital platform can facilitate both the discovery and useful implementation of research findings. Observations that challenge our initial reactions or established positions have practical value in addition to testing and developing theory. Crowdsourced science can thus be made to directly benefit people who are contributing to the research. For users, personal insights about potential covert influences on one’s decision-making about a given issue provide a unique opportunity to reflect on whether such factors had a notable or justifiable impact.

If technological tools can be designed to create engagement and raise users’ awareness of personal moral attitudes, this impact should be beneficial to users and societies alike. Because no individual voice can carry all that is ethically relevant, conditions should be created where voices can grow more independent from unexamined intuitions, algorithmic distractions, and societal polarization. Apps that are designed to encourage discovery—in both empirical and self-reflective sense—need to become a more common feature of our digital society. Knowledge about the implicit factors that influence our opinions and decisions should not be harnessed for financial or political ends but provided to all individuals who wish to preserve and enhance their autonomy.

Future work should demonstrate, review, and debate the educational and research potential of methods enabled by digital technology. To purposefully design digital bioethics, the field needs to resolve how to best employ these tools to benefit specific objectives, initiatives, and sub-disciplines. Researchers of applied ethics could embrace alternative publishing channels to ease the flow of preliminary findings and generated hypotheses to the confirmatory stage as well as design accessible and engaging ways of bringing resulting discoveries to inform public deliberation.

Data Availability

Authors have permission from Duckling Codehouse Oy (publisher and copyright holder of MyBioethics) to analyze and publish data gathered via the application. The owner Heikki Saxén is one of the authors and hereby approves the use. The data that support the preliminary findings presented in this article are available from the corresponding author, Joel Janhonen, upon reasonable request. Alternatively, contact the MyBioethics development team at Support . We only share or publish data that has been anonymized, and we do not include any demographic information that could risk re-identification.

www.instagram.com/mybioethics .

For example, see: www.mybioethics.com/research .

When the revised version was submitted, these values had evolved, and new findings had emerged—we will present these in future work. See updates on the relationships: www.mybioethics.com/relationships .

During the review process, a significant number of votes were submitted evolving the preliminary results. However, we retained the original values in Table  3 so as not to be unduly selective over timing. However, one finding was removed from the original ten because its values had significantly changed. This well illustrates the need to consider these exploratory findings preliminary and update them when needed.

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The authors confirm sole responsibility for the following: conception and design of the approach, data collection, analysis and interpretation of preliminary findings, and manuscript preparation. The creation of the app’s educational content involved many writers who also indirectly contributed to this work. The integrated surveys have their respective sources, which we have acknowledged here and in the application.

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The mobile application and the connected website were developed in collaboration with the Finnish Institute of Bioethics, a non-profit organization. The authors of this work are researchers and board members at the institute. Due to legal reasons, the application was published by Duckling Codehouse Oy, which also is the holder of its copyright. Authors have varying personal business relationships with this company, and they have at times received compensation for their work developing the application and its content. However, given that the software is free and contains no advertisement, any increase in app use or number of downloads does not directly financially benefit them, the institute, or the company. This research will be used to apply for future funding.

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Janhonen, J., Värttö, M. & Saxén, H. MyBioethics: How Ed-Tech Enables Discovery-Driven Empirical Bioethics Research. DISO 3 , 35 (2024). https://doi.org/10.1007/s44206-024-00119-w

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Ethics and Bioethics as a research topic in Dentistry: a gap in the scientific knowledge

Bibliometric quantitative investigation in the website files of the International Association for Dental Research (IADR), through a search of the term/fragment "ethic". The presence of Ethics and Bioethics as a subject of dental research was negligible during the study period. There is a large gap in the production of scientific knowledge within this area, which may lead to repercussion both in academic as well as in performance of dental professionals.

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https://www.ijhsr.org/IJHSR_Vol.9_Issue.3_March2019/IJHSR_Abstract.033.html

International Journal of Health Sciences and Research (IJHSR)

Background: This article focuses on ethics among dentists. Dental ethics would mean moral duties and obligations of the dentist towards his patients, professional colleagues and to the society. There are four basic principles which act as guidelines for decision making. Findings: Ethics forms an important part of a profession. The code of ethics prescribed by regulatory bodies as well as professional associations act as a guiding light in distinguishing between the right and the wrong, observing one"s duties and maintaining good interpersonal relationships.

Brazilian Journal of Development

Andréia Gomes

Online Journal of Health Ethics

Shivani Mathur

International Journal of Research in Pharmaceutical Sciences

Arthi Balasubramaniam

Dentists are one among the medical professionals who often encounter complex ethical issues. Playing the role of a health professional, business enterpriser and academician they often run into specific and conflicting ethical demands in practice and research. This cross-sectional study was conducted among dental professionals attached to educational institutions and private practitioners. A total of 95 participants, including private practitioners, faculty members, and post-graduate students, were recruited. A pre-validated, questionnaire containing questions related to awareness and perception in dental ethics was administered. Descriptive statistics was done to report the level of awareness and perception of dental professionals. About 65% of post-graduate professionals had awareness in clinical ethics when compared to undergraduate professionals who had 58% awareness. However, 75% of undergraduate professionals had awareness in research ethics compared to post-graduate profession...

Journal of Education and Ethics in Dentistry

Vidya Doddawad

Mirelle Finkler

Journal of Medical Ethics

Sefik Gorkey , Gurkan Sert

Understanding dental ethics as a field separate from its much better known counterpart, medical ethics, is a relatively new, but necessary approach in bioethics. This need is particularly felt in dental education and establishing a curriculum specifically for dental ethics is a challenging task. Although certain topics such as informed consent and patient rights can be considered to be of equal importance in both fields, a number of ethical issues in dental practice are only remotely-if at all-relevant for medical practice. Therefore, any sound approach to education in dental ethics has to recognise the unique aspects of dental practice in order to meet the needs of dental students and prepare them for the ethical challenges they may face during their professional practice. With this goal in mind, this paper examines the approach of the authors to dental ethics education and proposes a system to organise the topics of biomedical ethics for dental education. While the authors' perspective is based on their experience in Turkey, the proposed system of classification is not a rigid one; it is open to interpretation in other contexts with different social, cultural and professional expectations. Therefore, the paper also aims to inspire discussion on the development of an ideal dental ethics curriculum at an international level.

Kakarla Prasad

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Essays on Bioethics

Bioethics essay topics for college students.

As a college student, choosing the right essay topic is crucial for a successful assignment. It's not just about fulfilling a requirement, but about expressing your creativity, exploring your interests, and contributing to the academic discourse on bioethics. This resource page aims to provide you with a variety of essay topics and examples to inspire your writing and help you engage with this important subject.

Essay Types and Topics

Argumentative essay topics.

• The Ethics of Genetic Engineering
• Healthcare Access: A Moral Imperative
• The Moral Implications of Cloning

Paragraph Example: The field of bioethics has long grappled with the ethical implications of genetic engineering. As technology advances, the ethical considerations become even more pressing. In this essay, we will explore the ethical complexities surrounding genetic engineering and its impact on the future of humanity. The central question we will address is whether the benefits of genetic engineering outweigh the potential ethical concerns.

Paragraph Example: The ethical considerations surrounding genetic engineering are complex and multifaceted. While the potential benefits are undeniable, the ethical implications cannot be ignored. As we move forward, it is crucial to engage in thoughtful and informed discussions to ensure that the advancements in genetic engineering are guided by ethical principles.

Compare and Contrast Essay Topics

• The Ethics of Animal Testing vs. Human Clinical Trials
• Medical Ethics in Different Cultures
• The Ethical Dilemmas of End-of-Life Care

Descriptive Essay Topics

• The Ethical Landscape of Assisted Reproductive Technologies
• The Moral Imperative of Organ Donation
• Exploring the Ethics of Biomedical Research

Persuasive Essay Topics

• Ethical Considerations in Access to Healthcare
• Advancing Bioethics in Public Policy
• The Ethical Imperative of Environmental Conservation

Narrative Essay Topics

• An Ethical Dilemma I Faced in a Healthcare Setting
• My Personal Journey in Understanding Bioethical Issues
• A Fictional Exploration of Ethical Quandaries in Biotechnology

Engagement and Creativity

When choosing a bioethics essay topic, don't be afraid to explore your interests and think outside the box. Engage with the subject matter passionately and critically, and let your creativity shine through your writing. Bioethics is a field that constantly evolves, and your unique perspective can contribute to the ongoing dialogue.

Educational Value

Each essay type offers unique opportunities for learning and skill development. Argumentative essays hone your analytical thinking and persuasive writing skills. Compare and contrast essays deepen your understanding of ethical complexities. Descriptive essays allow you to develop your ability to articulate nuanced ethical issues. Persuasive essays empower you to advocate for ethical principles. Narrative essays provide a platform for personal reflection and storytelling.

Bioethical Issues in My Sister’s Keeper: Having Your Autonomy Taken to Save Your Sibling

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Overview of Bioethics The Trigger of Contentious Moral Topics

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Benefits and Imperfection of The Human Genome Project and Gene Cloning

Issues over the use of genetic modification technology, the ethical implications of genetic testing, the power of genetic modification, the ethics of animal testing: an argument against its practice, the drawbacks of free healthcare: economic, quality, and access issues, the importance of keeping exotic animals, charlie gampero: case study, our posthuman future analysis, let em play god analysis, relevant topics.

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The current status and challenges of bioethics education in undergraduate medical education in Karachi, Pakistan

• Bushra Shirazi 1 ,
• Qamar Riaz 2 ,
• Aamir Mustafa Jafarey 3 ,
• Rashida Ahmed 4 &
• Mohammad Shahid Shamim 5  

BMC Medical Education volume  24 , Article number:  737 ( 2024 ) Cite this article

Metrics details

The importance of including bioethics in the medical curricula has been recognized globally. Certain countries including Pakistan continue to lag behind although some developments have occurred recently.

The research aimed to provide a snapshot of bioethics education in undergraduate medical colleges in Karachi, Pakistan. The secondary objectives included identifying factors promoting or inhibiting integration of bioethics into the curriculum.

A two-pronged strategy was used to collect data including a website review of medical colleges, in existence for more than ten years, recognized by the Pakistan Medical and Dental Council (PMDC), the regulating body for undergraduate medical education in Pakistan. The other arm employed in-depth interviews with medical educationists in colleges fulfilling inclusion criteria. Data from the website was analyzed and presented as frequencies. Qualitative data was analyzed using content analysis method which involved coding of transcripts, multiple readings and arriving at subthemes and themes iteratively.

Thirteen medical colleges were included for the website review, of which four were from public sector. Three medical colleges used the word “ethics” in their vision and mission statement and four had provided a detailed curriculum for ethics on their website.

Thematic framework included four broad themes: 1) Need for Bioethics Education, 2) Current Status of Bioethics Education 3) Challenges in integration of bioethics in medical curriculum and 4) Recommendations for integration of bioethics in the Curriculum. Participants were in agreement that bioethics was important in development of future physicians. Participants identified various challenges, foremost being shortage of trained faculty, lack of institutional buy-in and overcrowded curriculum.

The study identified sporadic inclusion of bioethics in undergraduate medical curricula, left to the discretion of individual institutions. Since Karachi is a cosmopolitan city, the findings may reasonably reflect the situation in other parts of the country. While bioethics is recognized as an important field, it will continue to remain an orphan subject in the curricula unless the regulatory and accreditation bodies make it compulsory for institutions to include ethics in their curricula.

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Introduction

Medical education has increasingly paid attention to the inclusion of bioethics teaching in the curricula globally [ 1 ]. Certain countries however have lagged behind, for instance in the Asia–Pacific region such as Malaysia, and India [ 1 , 2 ]. Pakistan, also a South Asian low-middle income country joins this group even though the accreditation body for undergraduate medical education the Pakistan Medical and Dental Council (PMDC) recommended introduction of bioethics education as a part of undergraduate medical curricula in 2002 [ 3 ]. While the guidelines explicitly stated that bioethics must be taught and assessed in medical programs, the introduction of bioethics education into the curriculum was left at the discretion of medical colleges. These institutions, both in the public and private sector were expected to develop their own strategies for the implementation of bioethics education.

During the past two decades, some medical colleges in the country included bioethics in their curricula. However, a report from 2011 demonstrated that bioethics was not taught as a formal part of the curricula, leaving education in this field optional rather than mandatory. Where taught, it was subsumed under different umbrellas such as forensic medicine or behavioral sciences [ 4 ]. Shaikh & Humayun also illustrate that where present, bioethics was shuffled between different disciplines including community medicine, behavioural sciences or jurisprudence [ 5 ].

Limited literature is available on the current status of bioethics in the undergraduate medical curriculum. Most have addressed the development of a bioethics theme in a single medical college, or assessed the need for bioethics education in Pakistan in general [ 6 , 7 ]. The current status of bioethics education in the undergraduate medical curricula in Pakistan therefore remains largely obscure.

This study aims to provide a situation analysis of the status of bioethics in undergraduate medical education in Karachi, one of the main cosmopolitan cities of Pakistan. The paper, through a qualitative inquiry with key stakeholders in the field seeks to explore challenges associated with inclusion of bioethics in Pakistan along with methods to improve the current situation. The findings of this inquiry would be useful for the accrediting bodies to execute the inclusion of bioethics education in medical curricula across the country. It also holds lessons for other countries struggling with similar challenges of standardization and implementation.

The study follows a cross sectional descriptive-exploratory study. It was conducted as part of a thesis to fulfill the requirements of Master’s in Health Professional Education in Karachi from November 2020 to April 2021 by the first author. Ethical approval was sought from the Ethical Review Committee of Aga Khan University (AKU), Karachi.

The study followed a two-pronged approach for data collection. One arm comprised of a website review of medical colleges and universities in Karachi to assess whether bioethics is included in the curriculum. A non-probability, purposive sampling was used to identify medical colleges and universities located in Karachi that had existed for more than ten years from the accrediting body (PMC/PMDC) website. The websites of these medical colleges were reviewed, and information related to the vision and mission statements, and the presence and placement of bioethics in the curriculum were recorded in a pre-designed data extraction form.

The second arm consisted of collecting data through semi-structured interviews with key stakeholders primarily medical educationists. The key stakeholder was considered as someone who was responsible for overseeing the curriculum and academic calendar. Emails were sent to academic leaders, such as the Dean and Principal of the 13 selected medical schools, requesting identification and subsequent permission to interview the key stakeholder in their institute. Reminder emails or telephonic messages were sent in case of non-response for two weeks. The identified focal persons were then contacted, and interviews were scheduled at their convenience.

Prior to initiating the interviews, informed consent was informed assuring the participants that their name or that of their institute would not be mentioned in any publication resulting from the research.

The first author (BS) conducted the interviews following an interview guideline developed specifically for the purpose of this research. Questions pertained to the status and the presence of bioethics in the institution, along with inquiry into the challenges of bioethics education specific to their context. The guideline also consisted of questions relevant to bioethics curriculum, teaching and assessment strategies used within each institute. Conducted in a mix of English and Urdu (the national language of Pakistan), the interviews lasted for 30 to 40 min. They were recorded with the participant’s permission. Data saturation was reached at approximately the 7th interview since similar codes and ideas were being expressed by the interviewees.

Interviews were transcribed verbatim by an office secretary and verified by the first author (BS) for accuracy by reading the transcripts while listening to the audio recordings. Subsequently, they were analyzed independently by two reviewers (AJ, MSS) who were chosen due to their familiarity with the field of bioethics education. The process of adding multiple reviewers allowed for reflexivity on part of the primary investigator and ensured rigor in data analysis. Codes were developed using inductive method of data analysis independently by all three reviewers using the content analysis method [ 8 ]. The coding focused only on manifest content due to the nature of the topic being studied. The reviewers and primary investigator met to arrive at a consensus for the final thematic framework which included subthemes grouped under broader themes.

The thematic framework was also reviewed by the supervisors for this thesis (QR) thus adding credibility to the findings of this research. Triangulation was achieved by ensuring data collection through two methods.

Website review

Thirteen medical colleges fulfilled the inclusion criteria. Four out of the thirteen medical colleges were from the public sector, and the remaining were private. One medical college had no academic information on its website, while two were affiliated with a single university, hence sharing the website.

Eleven institutes stated their vision and mission statements, whereas two provided only the mission statement. The vision or mission statements of the institutes focused on matters of academic excellence, such as “centre of excellence,” “institution of distinction,” or “benchmarks for medical education.” Only three medical colleges used the word “ethics” in these statements, including “to produce ethical and dedicated professionals” and “medical education based on best ethical and evidence-based standards.”

Four out of the 13 medical colleges provided well-developed curricula on their website, while another four contained ethics-related objective integrated into different modules. The placement of ethics-related content was varied. At one medical college, medical ethics was placed in the dedicated slot for forensic medicine and identified 3–4 topics within the content. Other institutes placed the topics according to modules; for example, ethical concerns with reproductive health were placed in the respective clinical rotation.

One institute carried no information on bioethics on its website. None of the websites mentioned bioethics teaching or assessment as a separate entity or activity within the medical curriculum.

Qualitative arm

Fourteen key participants from 13 medical schools participated in the in-depth interviews. Ten were females. Five interviewees served as both clinicians and medical educationists within their institutes. Four participants possessed formal training in bioethics. Of these one also had a graduate degree in medical education. Detailed characteristics of participants are provided in Table  1 .

Content analysis of the interviews generated four distinct themes and subthemes (see Table  2 for detailed thematic framework). The narrative however only provides the broad themes due to word count constraints encompassing elements that formed part of subthemes.

Theme 1: Need for ethics education

Majority of study participants believed that bioethics requires a formal structure within the undergraduate medical curriculum for multiple reasons. While ethics may be considered “ tarbiat ka hissa [part of grooming]” (P14), as stated by one participant, ethics education is necessary to “ polish ” (P14) the personality. It was pointed out that demonstrating ethical behaviour and correct bedside manner should not be taken for granted. Instead, it should be taught formally so that students realize the importance of demonstrating proper mannerism and integrity in their professional lives.

Participants believed that bioethics education allows appreciation of cultural diversity. Students from diverse backgrounds study in medical colleges and universities, and ethics education can help in developing tolerance and appreciation of different values. According to a participant, “ haar kisi ka background different hota haey, moral values different hoti haen …. […people have different backgrounds with different moral values]” (P8).

Furthermore, participants were of the opinion that bioethics education allows for the development of integral communication skills necessary for fostering an excellent physician–patient relationship. It allows for the development of empathy and leads to lateral thinking. “ You are producing a doctor, not a robot providing only knowledge, you are producing a good human being, you are producing a good leader… bioethics is a part of this ” (P11).

Participants also believed that requirements of the educational system had changed dramatically in contemporary times. According to one participant, “Things need to be spelt out. It has to be now part of formal training. You cannot simply rely on seniors to teach you things” (P7). She provided the example that she was only able to understand the implications of interactions with the pharmaceutical industry after receiving formal education in bioethics, resulting a change in her clinical practice.

Theme 2: Current status of bioethics education

Interviews revealed that none of the studied medical colleges had a dedicated department or a unit responsible for bioethics education. Only one respondent in the medical college stated that her job description explicitly included overlooking and planning the curriculum for ethics education. Three institutes had mentioned bioethics education as a formal part of the curriculum, whereas, in one institute, bioethics education was done informally as a personal initiative by a faculty member with a postgraduate diploma in bioethics. In one private medical university, bioethics education existed for over two decades with a well-defined curriculum, identified pedagogies, outcomes, goals, and designated faculty members from various clinical and non-clinical departments. However, even this university does not have a separate bioethics department or unit.

Lack of standardization was seen across the institutes with the initiative largely person-driven rather than mandated by the institute. In most institutes, the teaching was “patchy” and “varied” primarily because it was “done at the faculty’s initiative” (P3).

Against this backdrop, faculty members who had initiated bioethics in their institutions believed that since teaching bioethics was not part of their job description, they did not receive any remuneration for it. According to one interviewee , “the faculty go far and beyond” in their line of duty, with “no perks” attached to the extra work they undertook (P5). As one participant stated laughingly , “Nobody gets extra credit for it. We may get praise for the extra work, but that’s it” (P14). Another related issue was that people are generally reluctant to pursue formal qualifications in bioethics since there is “ no [formal] career track ” (P3) in the field. However, faculty regarded their effort as “giving something back to their institution” which had supported them in their career development (P2).

Theme 3: Challenges in the integration of bioethics education in medical curriculum

All participants believed that finding the right person to teach bioethics was one of the biggest challenges, “I think faculty training is the major challenge…we don’t have people to teach. And nowhere in Pakistan are there enough people to teach [bioethics]” (P6). Even if interested faculty was available, they often did not know how to teach bioethics. As one stated, “The issue is not just the content; the issue is also how to teach” (P6).

Another interviewee, while discussing the shortage of human resources, explained the importance of all departments taking up components and playing their part, “Each medical specialty has its ethical issues. Paediatrics will have its ethical issues as would the field of geriatrics…. So, the departments need to teach them, and there should be role models so students can learn through their actions/practice” (P10, P12).

Lack of institutional buy-in was particularly prominent in more recently established colleges. Since the institutions did not realize the importance of bioethics, relegating it to a lower status within medical education and training, they did not want to invest in it. According to one participant in such a college, “ There is resistance from these smaller colleges because one will have to hire faculty” (P10). This resistance naturally occurred because including this would mean that: “ we would need to make a slot in the timetable, will need to train faculty, will need to develop a curriculum and then implement it. It’s not an easy task to do…why would we want to have another thing burdened on us? ” (P14).

Institutions also demonstrated limited interest in establishing bioethics departments since “It is not required by authorities (regulatory bodies).” Participants believed that the push to develop such departments has failed because “every department, every discipline, which has staff and faculty… it all costs money. Why would the institute spend on something that is not required by authorities (regulatory bodies)” (P3).

These challenges were compounded since according to participants, many professionals considered teaching bioethics as a “waste of time” (P11) and “did not realize the importance of teaching ethics .” Participants believed that individuals occupying more senior positions did not realize the importance of imparting ethics education, since according to one participant, “…they were not trained in it.”

Theme 4: Recommendations for integration of bioethics in the curriculum

The interviews also explored potential solutions that the participants thought would help successfully integrate bioethics into the curriculum. Participants believed that one of the ways to do so would be to strengthen faculty by providing training resources. According to one participant, a minimum six month training should be made mandatory for all faculty, drawing a parallel to how formal qualification in medical education for all faculty was made mandatory.

Participants believed a standardized curriculum for bioethics would ensure better cohesion. As one participant stated, “ People should be identified (for curriculum development), and everyone needs to come together (for using it) ” (P8). Participants also recommended that institutions planning to initiate bioethics education should invite individuals from institutions where ethics has been taught for several years.

Study participants emphasized a top-down approach to address this issue, where a regulatory authority should mandate the inclusion of bioethics in the medical curriculum for accreditation since in their opinion, it was necessary to use “danda [stick]” (P11) for making ethics education a mandatory part of the curriculum for receiving accreditation from PMC (PMDC). Another added, “The only thing that can drive it is a regulation. I am telling you if PMDC had not made a regulation that there should be a physiology department, anatomy department, biochemistry department in a medical college, then you would have medical colleges without these departments” (P3).

The current work provides a situation analysis of bioethics education within the medical curriculum in specific undergraduate medical colleges/universities in the cosmopolitan city of Karachi. Efforts to document different aspects or components of bioethics education at specific institutes are present, but a holistic picture has largely been missing from the Pakistani literature. The paper therefore a valuable contribution to medical education literature with lessons for other countries who share similar issues.

Findings reflect that while bioethics education is gradually gaining prominence, it is largely driven by individuals with an interest in the field rather than structural adjustments. The variation in the curricula of different institutes demonstrates that the onus of responsibility is left to the institutes to develop its academics standards rather than a central authority mandating the inclusion of bioethics in the curricula. This has been mentioned from other literature in Pakistan [ 9 ].

While there is acknowledgment of the importance of bioethics education in the curricula to enhance ethical behavior, bioethics is seen as an “add-on” or considered “fluffy” and “soft.” In the current study, this was reflected in negative perceptions towards teaching of bioethics among many healthcare professionals, as told by study participants. This has also been evident from elsewhere among students who consider learning of ethics as lower priority compared to clinical knowledge and skills [ 2 ]. Since much of the curriculum is dedicated to enhancing scientific and clinical knowledge, the “soft skills” of professionalism and ethics tend to be ignored in an already over-crowded curriculum. This finding has been demonstrated from other parts of the world as well [ 1 , 10 ]. This may very well be because of the viewpoint that while clinical skills are likely to generate clinical revenue, education in ethics with limited career opportunities is unlikely to be lucrative.

Another significant challenge reported by participants include the limited human resources available who have the required expertise to teach and implement bioethics. Lack of teaching capacity in the field of bioethics has been identified a major challenge within resource constrained settings including India [ 1 , 11 ]. Medical students in Brazil, for instance, have also voiced these concerns with respect to qualified faculty available to handle the discussions generated in ethical discourse [ 12 ]. In Pakistan, the experience so far has been that medical educationists are typically hired to review the curricula and are tasked with the responsibility to include aspects of professionalism and bioethics. However, this creates practical issues. Medical educationists may not have background in teaching or assessing bioethics. For those handed this forced responsibility demonstrates a classic case of institutions “passing the buck” without providing the required infrastructure to the discipline by providing an appropriate human resource with subject knowledge. This is in contrast to the United States where medical ethics is required to be taught in medical colleges. However, even in the United States, there remains variation in the content included in the curriculum with instructors left to their own devices to organize the stated objectives of medical ethics courses [ 13 ].

The way human resource is utilized also complicates the picture of bioethics education in Pakistan. Since there is no remuneration to be expected for this field with individuals drawing their income from their primary fields, bioethics education will continue to remain neglected. One way of resolving this issue is to include bioethics within a larger umbrella of professional development, done in the context of two medical colleges in Hong Kong and Malaysia as reported by Ngan (2021) [ 2 ].

The top-down approach involved integrating ethics with humanities and law thereby addressing challenges of time and limited faculty available. This model may be improvised in Pakistan by adding a component the use of “dual appointments” and “value-added education” mentioned by the participants in which faculty are then remunerated for the additional work to increase extrinsic motivation.

Considering the multiple challenges identified by participants, it appears as if a top-down approach may be essential in formalizing bioethics education as part of the medical curriculum in Pakistan. Participants voiced that unless an initiative was undertaken on the part of the central regulatory authority mandating the establishment of bioethics departments, or regulations that make it necessary for institutes to include bioethics in their curriculum, bioethics would continue to remain a low priority. The case of India provides a relevant example. In 2019, the National Medical Commission of India introduced the Competency Based Curriculum in Medical Education for undergraduate medical students with a new module named Attitude, Ethics and Communication (AETCOM) across the country [ 14 ]. This change, instituted at the national level, has led medical colleges to adopt ethics and professionalism in a longitudinal fashion within their curricula. While long-term impact remains unknown at this point, a few studies have illustrated positive perceptions of this module among faculty and students alike [ 11 , 15 ].

Another significant hindrance to this issue has been the uncertainty at the governmental level. In 2020, the federal government mandated the formation of Pakistan Medical Commission (PMC) to replace the existing regulatory structure, Pakistan Medical and Dental Council (PMDC) [ 16 ]. This was then reversed in 2022 [ 17 ]. Against this backdrop of structural adjustments and inconsistencies at the regulatory level, bioethics already an orphaned field is unlikely to receive its due importance. PMDC (as it is currently known) should ensure that bioethics should be a mandatory aspect of the curricula for institutions to receive the necessary accreditation. This will require lobbying from key stakeholders who are committed to upholding bioethics education in the country.

This research provides a situation analysis of bioethics education in the country albeit with a focus only on Karachi. However, this city can be considered a microcosm for the rest of the country, adequately capturing the current realities. The findings of this study also hold importance in terms of policy-making since it provides directions for institutes and accreditation bodies by identifying the gaps and challenges. It is hoped that the study will initiate a dialogue about inculcating bioethics in the curriculum and ignite interest in this field.

The study also has several limitations since it has looked at a sample of a selected group of people. Other stakeholders’ voices such as those of faculty in other fields, students and the administrative body can help provide a wider picture of the Pakistani context as far as bioethics education is concerned.

Conclusions

The common challenges identified in this study across institutes are a lack of human resources and institutional commitment and more prominently, need for the implementation of strict policies from accrediting bodies. The study highlights a significant lack of bioethics education for medical students in Karachi, with varying levels of implementation across different institutions. While some institutions have been teaching bioethics for a long time and continuously improving their systems, the majority do not offer any bioethics education. It seems that there is a long path ahead before bioethics education in undergraduate medical education is well-established in the country.

Availability of data and materials

The data will be available from the corresponding author on reasonable request.

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National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Sciences Policy; Beachy SH, Wizemann T, Choi K, et al., editors. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington (DC): National Academies Press (US); 2020 Jun 19.

An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop.

• Hardcopy Version at National Academies Press

1 Introduction 1

Biomedical research 2 has led to numerous discoveries and the translation of those advances into the areas of medicine, health, and policy for the purposes of improving health and reducing the burden of disease. Conducting responsible biomedical research and appropriately using and applying the new knowledge gained from these investigations in society will mean integrating the basic guiding principles of bioethics 3 into the translational process. Technological advances in biomedical research can lead to the appearance of new and emerging bioethical issues. The use of new technologies may also mean that existing bioethical challenges may be viewed in a new light. As scientific research, technological advances, and societal perspectives of those advances continue to evolve, ethical discussions are needed at the intersections where innovations meet the people who may use them with the goal of ensuring that the benefits of research reach all individuals and that individuals are not subject to harms.

For example, as the use of digital technologies becomes ever more prevalent in daily life as well as in biomedical research and clinical care, new challenges related to informed consent, the privacy of patient information, responsible data sharing, and considerations for vulnerable and under-served populations are presented. Wearable technologies and applications on mobile devices passively collect biometric and behavioral data that can then be used for self-study or self-care, shared with health care providers, or used by the digital platform for purposes that the device owner might, or might not be, aware of. The potential ethical challenges can include issues related to health equity and health literacy (e.g., who has access to digital devices for participation in research) and a lack of data privacy protections for user-generated data that could be used to make conclusions about an individual's health. New models of biomedical research are emerging too, including patient-led research that takes place outside of the traditional regulatory environment (and often employs digital technologies). Individuals involved in citizen science 4 might fall into a less regulated area of research where the adherence to ethical research norms has less oversight. Another ethical challenge for the research enterprise in the United States is that certain populations have been consistently underrepresented in research (e.g., rural, low socioeconomic, and racial/ethnic minority groups), making it less likely that the benefits from research will be equitably distributed. Structural racism is a contributor to racial inequalities in health, and an examination of the origins of race can be helpful to begin to understand this important issue.

On February 26, 2020, the Board on Health Sciences Policy of the National Academies of Sciences, Engineering, and Medicine (the National Academies) hosted a 1-day public workshop 5 in Washington, DC, to examine current and emerging bioethical issues that might arise in the context of biomedical research and to consider research topics in bioethics that could benefit from further attention. The scope of bioethical issues in research is broad, and for this workshop the independent planning committee chose to focus on issues related to the development and use of digital technologies, artificial intelligence, and machine learning in research and clinical practice; issues emerging as nontraditional approaches to health research become more widespread; the role of bioethics in addressing racial and structural inequalities in health; and enhancing the capacity and diversity of the bioethics workforce. Specific areas of research were outlined in the Statement of Task (see Box 1-1 ) as being out of scope for the workshop due to other ongoing projects in those spaces. The workshop was sponsored by the National Institutes of Health (NIH) Office of Science Policy.

Workshop Statement of Task.

• CURRENT AND HISTORICAL SUPPORT FOR BIOETHICS RESEARCH

Over the past 25 years many members of the bioethics community have benefited from funding from NIH, said Jeffrey Kahn, the director of the Johns Hopkins Berman Institute of Bioethics and the chair of the workshop planning committee. For example, support for bioethics from NIH has included bioethics-focused, investigator-initiated projects and research; inclusion of bioethics as a component in biomedical research projects; the embedding of bioethics researchers within biomedical research to examine and analyze the ethical issues raised; and support for trainees in bioethics-related programs.

Kahn said the majority of bioethics-related NIH research funding has been focused in three main areas: genomics, funded through the ethical, legal, and social implications (ELSI) portfolio that is administered by the National Human Genome Research Institute (NHGRI); the ethics of biomedical research, supported by several institutes of NIH; and bioethics capacity building outside the United States, through the funding portfolio administered by the Fogarty International Center. This support for bioethics research has been essential for the development of the field of bioethics and for the careers of many researchers, but Kahn said that it has also had the predictable effect of focusing bioethics research mostly into these three areas.

More recently, Kahn said, NIH has expanded its portfolio for bioethics research, including funding from the NIH Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, which has explored neuroethics issues. Recent bioethics funding opportunities from NIH include administrative supplements 6 to support research on bioethical issues to inform policy development and funding from the National Center for Advancing Translational Sciences 7 to support the study of ethical issues in translational science research.

Although the NIH bioethics portfolio continues to expand, it is still limiting researchers in some ways, Kahn said, as there are many bioethics topics, and approaches to studying them that do not fall within the current NIH funding portfolio. This workshop is an important beginning to the discussion of how that research portfolio might be expanded further and create new opportunities, Kahn said (see Box 1-1 ).

It is important to note that the World Health Organization declared COVID-19 a pandemic on March 11, 2020, 2 weeks following this workshop. At the time of the workshop, there was limited evidence of community spread in several U.S. states, and widespread physical distancing efforts had not yet been implemented in the United States. As such, speaker remarks were focused broadly on bioethical issues in biomedical research and clinical care that were not related specifically to COVID-19. On March 27, 2020, the Coronavirus Aid, Relief, and Economic Security (CARES) Act was signed into law, expanding reimbursement for telehealth and remote patient monitoring under Medicare. 8 Other large private payers, including Aetna, Cigna, and Blue Cross Blue Shield, have also expanded coverage of telehealth in their health plans. 9 The Office for Civil Rights at the U.S. Department of Health and Human Services (HHS) issued a statement in mid-March 2020 indicating that it would be exercising enforcement discretion about the Health Insurance Portability and Accountability Act of 1996 rules regarding remote communications technologies used for telehealth during the pandemic. 10 Given this rapidly evolving landscape, there may be additional bioethical issues related to digital technologies, structural racism and health disparities, privacy, and other topics that were not expressly covered during the workshop and that warrant further discussion as well as additional funding opportunities. For example, at the time of publication, NHGRI had issued a new funding opportunity for ELSI research related to COVID-19. 11

• OVERVIEW OF TOPICS HIGHLIGHTED DURING PRESENTATIONS AND DISCUSSIONS

A number of topics were discussed throughout the workshop sessions as participants considered the range of bioethical issues that are relevant to biomedical research. While the workshop was funded by NIH, the meeting day aimed to cover material that would be of value to many groups in the fields of bioethics and biomedicine, including academic researchers and funders from the United States and around the world. While several of the presenters provide considerations for NIH, the issues raised during the discussions may also be of interest to other stakeholders. The topics highlighted below were drawn from individual speakers' remarks and the open discussions and are addressed further in the succeeding chapters.

Ethical Norms

Several times during the workshop speakers acknowledged that data scientists and digital technology developers currently operate under a very different set of cultural norms, ethical commitments, and incentive structures than those of biomedical research and health care practice. Some speakers said that a better understanding of ethical issues is needed by digital technology developers and data scientists but that those efforts will also need to be supplemented by guidelines, regulations, system architecture, collaboration among various stakeholders, and improved incentive structures.

Multidisciplinary Collaboration

Collaboration among biomedical subject-matter experts and algorithm developers was discussed as being essential for the development and assessment of safe, reliable, and useful tools for health. Importantly there was also discussion about the potential value of designing bioethics research projects that draw from multiple disciplines, including law, philosophy, sociology, history of medicine, critical medical humanities, science and technology studies, and literary theory. Some speakers felt that it would be advantageous to pair bioethics research questions directly with scientific innovation.

Workforce Training

Training was a recurrent theme across panel discussions in terms of incorporating bioethical principles into various biomedical fields and for the purposes of preparing the bioethics workforce itself. As an example of integrating bioethics into other fields, it was discussed that the field of data science is in the early stages of addressing key ethical issues but that attention is now being paid to ethics challenges. It was mentioned that scientific conferences are devoting sessions or entire meetings to ethical issues and that colleges and universities are implementing ethics classes for data scientists. Speakers also shared their thoughts on the need for training clinicians and clinical laboratory professionals in the proper and unbiased use of algorithms. With regard to developing the bioethics workforce, it was discussed that bioethics training is reaching people too late in their careers and that there is a need to attract a more diverse group of people to the field of bioethics at an earlier age, including supporting doctoral research in bioethics. There was also discussion of the limitations of current bioethics training programs for research professionals. The importance of taking country context into account in training programs for bioethicists was also noted by speakers at the workshop as well as the value of training ethicists for transdisciplinary research.

Transparency and Choice in Data Sharing

There was much discussion about individuals' awareness of, understanding of, and ability to consent to the sharing and uses of their health and medical data. Participants discussed the value of transparency and choice when individuals must agree to the sharing of their data in order to receive services and when shared data are not subject to appropriate governance. Participants also discussed the differences between data sharing within the context of a research collaboration (where responsibilities and ethical norms are preserved) and the sale or transfer of data (where control is often relinquished).

Racism and Structural Inequalities

The impact of racism and structural inequalities was discussed relative to issues such as the development of digital technologies and disparities that can be introduced by their use, who participates in research and why they do or do not, and who has the opportunities to be trained for careers in the biomedical and bioethics fields. For example, it was discussed that biases in the data used to train machine learning algorithms can result in structural inequalities that perpetuate inequalities. Participants also discussed some of the historical context and current reasons why underrepresented populations often do not participate in research.

Power and Privilege

Implicit biases and structural forces assign status to people, which in turn may create differences in power and privilege. The concept of power and privilege was discussed in the context of the conduct of research—specifically, who has the right to formulate the questions, to define benefits and harms, and to define what qualifies as “success.” Workshop participants observed that professional researchers, who traditionally hold the power, often have not had the same lived experience as people from minority communities or individuals conducting self-study and often make the mistake of assuming they know what is needed by the people they are working to serve.

Research Questions for Funding or Focus

One of the objectives of the workshop was to consider potential research topics in the areas of bioethics as it relates to the use of digital technologies, data collection and use, citizen science, structural inequalities around who participates in research, and the workforce training infrastructure for bioethicists. A broad range of ideas were suggested by individual participants throughout the workshop for further attention and funding support, and these ideas are included in Chapter 6 .

• ORGANIZATION OF THE WORKSHOP AND PROCEEDINGS

This Proceedings of a Workshop summarizes the presentations and discussions that took place at the workshop on February 26, 2020. The first two panel sessions focused on the ethical issues associated with the use of digital health technologies, artificial intelligence, and machine learning in biomedical research and clinical care ( Chapter 2 ). The third panel considered the different forms of innovative research models that are participant-led or patient-centered (compared with scientific investigator–led), such as citizen science, that take place outside of the traditional regulatory environment. Panelists discussed other forms of citizen science, such as personal science, and the governance of unregulated research involving mobile devices and how people pursuing these types of studies might do so ethically ( Chapter 3 ). The next panel examined the impact of inequality on health, disease, and who participates in research. Panelists discussed race, racism, structural inequalities, the lasting impacts of historical ethical failures and harms, and the unique issues affecting sovereign tribal nations ( Chapter 4 ). This was followed by a discussion of bioethics workforce issues, including training needs and opportunities to ensure and maintain diversity in the workforce ( Chapter 5 ). The workshop concluded with observations and reflections shared by panelists from a variety of agencies that fund bioethics research and from audience participants ( Chapter 6 ).

This workshop was organized by an independent planning committee whose role was limited to identification of topics and speakers. This Proceedings of a Workshop was prepared by the rapporteurs as a factual summary of the presentations and discussion that took place at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

“Biomedical research” refers to research that is broad in scope and can span disciplines of biology, medicine, behavioral, and social sciences. Conducting biomedical research may imply experimental inquiries to understand events at the atomic, molecular, cellular, organismal, and population levels ( Flier and Loscalzo, 2017 ).

“Bioethics” refers to the multidisciplinary study of, and response to, moral and ethical questions related to innovations in biomedicine (see What Is Bioethics at https://bioethics ​.jhu ​.edu/about/what-is-bioethics [accessed May 18, 2020]).

The term “citizen science” does not currently have a widely accepted definition, but has been referred to as “the general public engagement in scientific research activities when citizens actively contribute to science either with their intellectual effort or surrounding knowledge or with their tools and resources” ( EC, 2014 ). Other terms for similar nontraditional research models include personal science, do-it-yourself science, patient-led research, or participant-led research. Citizen science is discussed in further detail in Chapter 3 .

The workshop agenda, speaker biographies, planning committee Statement of Task, and a list of attendees can be found in Appendixes A , B , C , and D , respectively.

See Notice of Special Interest: Administrative Supplement for Research on Bioethical Issues (Admin Supp Clinical Trial Optional), NOT-OD-20-038, https://grants ​.nih.gov ​/grants/guide/notice-files ​/NOT-OD-20-038.html (accessed April 29, 2020); and Notice of Special Interest: Administrative Supplements for Research on Ethical, Legal and Social Issues regarding Post-mortem Pediatric Tissue Procurement for Research Purposes (Admin Supp Clinical Trial Optional), NOT-OD- NOT-HD-20-012, https://grants ​.nih.gov ​/grants/guide/notice-files ​/NOT-HD-20-012.html (accessed April 29, 2020).

See Ethical Issues in Translational Science Research (R01 Clinical Trial Optional), RFA-TR-20-001, https://grants ​.nih.gov ​/grants/guide/rfa-files/RFA-TR-20-001 ​.html (accessed April 29, 2020).

For more information about the CARES Act, see https://www ​.congress ​.gov/bill/116thcongress/house-bill/748 (accessed April 27, 2020).

For more information on private payer coverage of telehealth, see https://www ​.aetna.com ​/individuals-families ​/member-rights-resources ​/covid19/telemedicine.html , https://www ​.cigna.com/coronavirus , and https://www ​.bcbs.com/coronavirus-updates (all accessed April 27, 2020).

For more information on HHS enforcement discretion related to telehealth remote communications, see https://www ​.hhs.gov/hipaa ​/for-professionals ​/special-topics/emergencypreparedness ​/notification-enforcement-discretion-telehealth/index.html (accessed April 27, 2020).

See Notice of Special Interest regarding the Availability of Urgent Competitive Revisions for Research on the 2019 Novel Coronavirus, NOT-HG-20-030, https://grants ​.nih.gov ​/grants/guide/notice-files ​/NOT-HG-20-030.html (accessed April 29, 2020).

• Cite this Page National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Sciences Policy; Beachy SH, Wizemann T, Choi K, et al., editors. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington (DC): National Academies Press (US); 2020 Jun 19. 1, Introduction.
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Political science major investigates the ethics of medical organ allocation

With a growing interest in bioethics, Naomi Mann ’24 designed a senior Independent Study to investigate the ethical principles and processes involved in medical organ allocation, especially in light of some patients’ refusal to receive the COVID-19 vaccine.   

“I have not only learned important research methods and skills, but also gained a greater sense of who I am as a researcher and writer which instilled so much confidence in me and my work.” —Naomi Mann ’24

Working with faculty mentor, Désirée Weber, associate professor and chair of political science , she asked important questions about what principles, such as equity and utility, are central to these health processes and decisions—and doing so especially with regard to the ongoing ripple effects of a global pandemic. She also considered patients’ reasons for refusing the vaccines and evaluated them for their relevance to the organ allocation process that all U.S. health institutions are bound by.  

Q: What excites you about your I.S.? 

Mann: My I.S. excites me because it allowed me a place to provide my unique voice and opinions on the complex issue of organ allocation which was pretty different from any other research or debate paper I wrote prior to I.S. I am super excited to continue to share my voice and contribute to the field of bioethics in hopes of helping to resolve many ethical issues in health care as I prepare to start graduate school this fall.  

Q: How did Wooster prepare you for designing your project? 

Mann: I was really interested in the legal and medical side of issues which we talked a lot about in my political science classes. I thought it’d be really cool to combine those two things. Junior I.S. definitely helped me start to develop a topic and design my project. Many of my classes focused on how to create an argument and defend it. We also talked a lot about theoretical ideas and made sure to apply those ideas to actual cases. I felt really prepared to do that in my project and make it more applicable to actual life.

Mann had the opportunity to present her research on bioethics at the 2024 Senior Research Symposium .

Q: In what ways has your relationship with your I.S. mentor supported you throughout this process? 

Mann: The political science department really lets you take the wheel on what you want to do. My advisor Dr. Weber helped refine my topic to ensure that it was not too broad or too specific, and helped answer all my research questions. The success of my I.S. project would not have been possible without Dr. Weber’s knowledge and guidance!  

Q: What has I.S. taught you? 

Mann: The I.S. process has been invaluable in preparing me for graduate school and beyond. I have not only learned important research methods and skills, but also gained a greater sense of who I am as a researcher and writer which instilled so much confidence in me and my work.  

In the fall Mann will be attending Johns Hopkins University pursuing a master’s in bioethics. “I hope to continue to understand and research the ethical issues related to organ allocation and transplantation,” she said.  “This topic truly fascinates me, and I am extremely grateful to Wooster and the I.S. process for allowing me to realize this passion.

Posted in Independent Study on May 24, 2024.

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