8/27 What is Bioethics?

bioethics

the study of value-laden issues in medicine, health, and the life sciences + formulating how best to resolve these dilemmas

bioethics often centers on “___ ___” questions

should we

True or False: While bioethics is interdisciplinary, it does differ from other fields

True

Bioethics vs. the Law

True or False: Something that is legal is also the same as what is ethical

False, sometimes what is legal is NOT the same as what is ethical

Ex: Abortion

• If we make abortion legal, is this unethical to the fetus?

  • If we outlaw it, is it unethical to the people who need to access it?

What kind of questions do bioethicists ask?

Is genetic selection of “designer babies” ethically permissible?

Under what conditions should we override someone’s autonomy? (ex: involuntary psychiatric commitment)

How do cultural + religious beliefs shape people’s values and inform how they wish to make medical treatment decisions?

Will human enhancements widen the gap in society between the very privileged and powerful, and those who are marginalized?

How can we protect human subjects in research?

Why did bioethics/research ethics emerge?

(Barrow et al 2024)

There were numerous cases of human rights violations, where vulnerable people were subjected to harmful medical interventions without their consent

examples:

Tuskegee Syphilis Study (1930s-1970s)

WWII Nazi + Japanese Medical Experiments (1930s-1940s)

Willowbrook Experiments (1950s-1960s)

Tuskegee Syphilis Study (1930s-1970s)

study of untreated syphilis, despite treatment becoming available in the 1940s

WWII Nazi + Japanese Medical Experiments (1930s-1940s)

forced experimentation on prisoners

Willowbrook Experiments (1950s-1960s)

intellectually disabled children given hepatitis to track development of virus

justification:

• children in institutions would “get it anyway”

• parents often agreed because otherwise their children wouldn’t be able to access hospitable services

The Nuremberg Code (1947)

a set of 10 ethical principles for human subjects research created during the Doctors' Trial (trials of Nazi physicians involved in experiments) in Nuremberg, Germany by American physicians

What principles does the Nuremberg Code include?

• informed consent

• minimizing suffering

• scaling degree of risk with potential benefit to society

• adequate + safe facilities for experiments

• only qualified researchers should conduct the study

The Declaration of Helsinki (1964)

an international set of ethical principles for medical/clinical research SPECIFICALLY involving human participants, developed by the World Medical Association (WMA)

• periodically updated

• ex: includes guidance on placebos in trials

The U.S. Belmont Report (1978)

a foundational U.S. research-ethics statement that outlines ethical principles and guidelines for protecting human participants in biomedical and behavioral research

• proposed 3 principles

• foundation of the Common Rule

What are the 3 principles of the US Belmont Report?

respect for persons, beneficence, and justice

The Common Rule

sets out federal guidelines for research followed by Institutional Review Boards (IRBs)

ex: who is on an IRB, types of IRB reviews (expedited, exempt, etc.), + expectations for informed consent (ie. disclosing risks/benefits of resreach)

Clinical Ethics

The God Committee (1962)

a group of physicians + lay people met to determine who could have access to dialysis care as a limited resource

What is a complex value judgment that emerged from the God Committee?

How do we determine who has “social worth” to be deserving of a scarce medical resource?

Clinical Ethics

Quinlan Case (1976) and Cruzan Case (1990)

2 cases where patients were on life support systems (respiration and feeding) due to vegetative state, and families fought in court to remove these measures

What are main ideas taken away from the Quinlan and Cruzan case?

• With new life support technologies come new ethical dilemmas

• The need arising for living wills

The Growth of Clinical Ethics Timeline

Late 1980s

Exponential increase in number of hospital ethics committees (Aulisio 2016)

The Growth of Clinical Ethics Timeline

Today

US hospitals are required to have a mechanism for ethics review

• often includes a clinical ethicist

clinical ethicist

holds a graduate degree in a relevant field (ex: PhD philosophy) with expertise in ethics

• offer recommendations to medical teams on how to proceed in fraught cases, but don’t make the decisions themselves

The Growth of Clinical Ethics Timeline

2018

launching of HEC-C certification for healthcare ethicists

The Healthcare Ethics Consultant-Certified (HEC-C) certification

a professional certification that evaluates and validates the core knowledge and skills of clinical healthcare ethics consultants

Normative Bioethics Work

analyzing and formulating opinions on the resolution of ethical dilemmas by applying theoretical concepts from philosophy and neighboring disciplines

Empirical Bioethics Work

collecting data (quantitative + qualitative) about an ethical dilemma, which can inform how best to resolve it

ex: interviewing both physicians + patients to better understand mismatches in their values that could contribute to misunderstandings about medical treatment

True or False: Bioethics weighs existing ethical dilemmas, but is also future facing

True! Bioethics worries about how we can prepare for novel biotech + future medical innovations by thinking through the ethical implications today

ex: human enhancement + emerging therapies (psychedelics)

ex: the movie Gattaca (1997) — helps us think thru what’s it mean someday to segregate people based on genetics + dangerous potential of genetic selection in reproductive medicine

• Is our future governed by our genes? What does that say about our values as a society, today and in the future?

What is bioethics?

A discipline that equips us with the conceptual tools to respond to ethical dilemmas around health, medicine, and science

The history helps us understand where the need for the field arose + encourages us to grapple with past harms