After World War II the world learned about horrific experiments that were carried out on Jews, prisoners of war, and other captive populations by Nazi doctors. Similar experiments were conducted by Japanese doctors on their captive populations, but it was during the Nuremberg war crimes trials that the world first learned of such brutal practices in the name of medical science. The experiments were generally intended to gain knowledge useful to the German war effort, but the most basic rights and interests of the coerced subjects were systematically ignored. Individuals were forced to endure agonizing and degrading treatment and then killed when they were no longer useful. Social utility had always been the justification for medical experimentation, but the excesses of the Nazi doctors made exceedingly clear that other human values of even greater importance could be, and had been, sacrificed in the name of the social good.

At home, as the American public learned, these basic values had sometimes been ignored as well. A number of unethical experiments were exposed in the late 1960s, culminating in the revelation in 1972 that a study of untreated syphilis had been conducted by the U.S. Public Health Service for decades in a group of black males in rural Alabama (Katz et al. 2007). It was apparent that the subjects had little idea of the purpose of the study, that deception had been used to recruit and retain them in the study, and that experimental procedures had been represented as therapeutic. In response to these revelations, Congress established in 1974 the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to study the ethics of research and to recommend ways to protect the rights of research subjects (President’s Council on Bioethics 2008). The commission formulated three principles of ethics that should guide research with human subjects.

First, research should be undertaken only if it holds reasonable promise of benefit to either the individual subject or to future patients. It is wrong to subject individuals to risk or even to inconvenience if the knowledge to be gained is trivial. The Principle of Beneficence echoes the traditional Hippocratic ethic, though it adds the dimension of benefiting other people as well.

In order to counterbalance and check potential justification by good results alone, the commission added the Principle of Respect for Persons. Potential subjects of
research should be treated as rational agents with their own goals and the ability to deliberate about how to achieve those goals. It would be wrong for researchers to ignore, discount, or sacrifice the interests of potential subjects in order to acquire knowledge, no matter how beneficial it might be to others. Respecting the autonomy of individuals means giving them adequate information about the research study, then allowing them to make their own free choices about participation. Of course, some individuals lack full capacity to decide for themselves, and respecting them as persons requires protecting their interests.

The third consideration that the Commission said should guide research is the Principle of Justice. Both the risks and the benefits of research should be spread evenly over all groups in a society. No group (for example, minorities, poor people, or rich people for that matter) should bear disproportionate burdens in advancing medical knowledge, nor should they reap disproportionate benefits (President’s Council on Bioethics 2008).

Rapid advancement of medical technology in the second half of the twentieth century presented the public with a number of new ethical puzzles. Organ transplantation, especially the possibility of cardiac transplantation, forced us to reconsider our traditional definition of death. In addition, new life-sustaining technologies were able to support biological life well beyond the irreversible loss of cerebral function.

Public concern about restraints on the use of medical technology became more pressing through the 1970s and 1980s. The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research was mandated by Congress in 1978 to study issues raised by the new technology. They issued influential reports on a number of topics, including defining death, making healthcare decisions, foregoing life-sustaining treatment, and of special relevance to this volume, genetic engineering, and genetic screening and counseling (President’s Council on Bioethics 2008).

As a prelude to their work, the commission articulated three ethical principles that would guide their deliberations, building on the prior work of the 1974 research commission. The first principle was well-being: promoting the overall best interests of everyone involved. The commission recognized that patient well-being should be primary, but that the well-being of others, including family, caregivers, and the larger community, is also ethically relevant. The second principle was self-determination or autonomy. Respecting this principle means giving patients information about their
condition and about possible choices, and honoring the choices that patients make. It also means safeguarding their privacy. The third principle was equity or justice, treating people fairly, in an even-handed and nondiscriminatory manner.