Ideas & Debates 01

Research Ethics & Human Experimentation

Who may be enrolled in research, under what conditions, and with whose consent?

Introduction

Research involving human beings creates a fundamental ethical tension. Scientific knowledge can improve medicine and public health, but producing that knowledge may expose individuals and communities to burdens, risks, or interventions undertaken partly for the benefit of others.

American research ethics developed through repeated disputes over the limits of scientific authority, the meaning of voluntary consent, the protection of vulnerable populations, the fair distribution of research burdens and benefits, and the responsibilities of institutions that conduct and oversee research.

The history is therefore more than the development of rules for informed consent. It is also a history of power, trust, justice, representation, and the governance of science.

01

How the Debate Developed

A focused pathway through canonical records in the American Bioethics Project.

  1. 1946-1947
  2. 1947
  3. 1966
  4. 1972
  5. 1974
  6. 1974–1978
  7. 1979
  8. 1993-1994

02

A Debate That Changed

  1. 1940s

    What makes human experimentation permissible?

  2. 1960s–70s

    How should research participants be protected?

  3. 1970s

    What principles should govern research?

  4. 1980s–90s

    Who gets to participate in decisions about research?

  5. 1990s

    Can exclusion from research itself be unjust?

03

People in the Debate

Canonical Person records currently available to this visitor.

Person

Henry K. Beecher

American physician and anesthesiologist whose work helped make the ethics of research involving human subjects a central concern of American bioethics.

Person

Patricia A. King

American legal scholar and civil rights lawyer whose work helped shape American bioethics through national ethics commissions, health law, and sustained attention to justice, race, and the social dimensions of biomedical policy.

Person

Ruth Faden

American bioethics scholar whose work on informed consent, autonomy, justice, and public health ethics has contributed to research ethics and broader debates about health and social justice.

Person

James F. Childress

American ethicist and bioethics scholar whose collaborative work on principles of biomedical ethics became a major framework for teaching and analyzing ethical problems in health care.

04

Questions to Consider

  1. Is informed consent sufficient to make research ethically acceptable?
  2. When does protecting a population from research become unjust exclusion from research?
  3. Who should have authority to determine which research risks are acceptable?
  4. How should histories of exploitation affect contemporary expectations of trust in research institutions?