ABP AMERICANBIOETHICS PROJECT

Federal commission established by the National Research Act of 1974 to study ethical issues in biomedical and behavioral research involving human subjects and to develop ethical principles, guidelines, and recommendations for their protection.

A federal bioethics commission created by Congress in 1978, with presidential appointments announced in 1979, that operated from 1980 to 1983 and advised the President and Congress on ethical problems in medicine and biomedical and behavioral research.

Partners In Health was founded in 1987 by Paul Farmer, Ophelia Dahl, Jim Yong Kim, Todd McCormack, and Thomas J. White to support community-based health work begun in Haiti.

The Ethical, Legal, and Social Implications (ELSI) Research Program was established as an integral component of the Human Genome Project to identify and address ethical, legal, and social issues arising from genomic research.

Disclosure of Cold War human radiation experiments raised questions about consent, secrecy, health risks, and federal accountability. President Clinton established the Advisory Committee on Human Radiation Experiments in January 1994 to examine that record and consider what government owed the people affected. The Committee investigated past experiments, evaluated historical and contemporary standards, and issued a 1995 final report addressing disclosure, remedies, and protections for research participants. Its archival inquiry made the ethical assessment of government-sponsored experimentation a matter of public record.

A cross-university faculty interest group developed into a formally established Johns Hopkins bioethics institute in 1995, with Ruth Faden as founder and director. The Berman Institute brought ethical inquiry across the university's schools as questions of public health, research, justice, and clinical care increasingly met. The Institute supported interdisciplinary research, education, and public engagement across research ethics, population health, justice, and clinical practice. Its cross-school structure gave bioethics a university-wide institutional setting rather than confining it to one professional program.

Executive Order 12975 established the National Bioethics Advisory Commission in 1995 as genetics, cloning, and other biomedical developments pressed federal agencies for ethical guidance. The Commission first met in 1996 and continued through a period of rapid debate about research involving human participants and human biological materials. Its reports addressed cloning, research involving people with mental disorders, stem-cell research, international clinical trials, and protections for human participants. Among them were Cloning Human Beings (1997), Ethical Issues in Human Stem Cell Research (1999), and two 2001 reports on international research and human-participant protections.

The NIH Clinical Center launched a dedicated bioethics department in late 1996 within a federal research hospital. Its location matters: investigators and clinicians there encounter ethical questions as research and care take place, not only when an external commission is convened. Ezekiel J. Emanuel became the department's first Chief in 1997. The department conducts conceptual, empirical, and policy research; trains bioethicists; and provides ethics consultation and advice to investigators and review bodies. These activities make ethical analysis part of the continuing practice of clinical research at NIH.

The Tuskegee Syphilis Study Legacy Committee first met January 18–19, 1996. Chaired by Vanessa Northington Gamble, with John C. Fletcher as co-chair, it urged a federal apology for the harms of the USPHS Syphilis Study at Tuskegee and proposed measures to address its continuing legacy.

Three professional societies consolidated in January 1998 after their members approved a merger the previous year. The American Society for Bioethics and Humanities brought established communities in bioethics, health humanities, and ethics consultation into one national association. Its creation followed decades in which these interests had developed through separate organizations. ASBH provided a shared professional forum and developed resources for health-care ethics consultation, including Core Competencies for Healthcare Ethics Consultants and a professional code. Those materials addressed the practice and responsibilities of consultation as bioethics became more established in health-care institutions.