Publications

The first wave of practical products from the international effort to produce systematic maps of the human genome and improve DNA sequencing technologies is taking the form of new tools to predict the risk of specific diseases in individual patients. DNA-based tests for molecular mutations associated with clinical syndromes increasingly...

This essay reviews the efforts of the U.S. Human Genome Project to anticipate and address the ethical, legal, and social implications of new advances in human genetics. Since 1990, approximately $10 million has been awarded by the National Institutes of Health and the Department of Energy, in support of 65...

Officials at the Human Genome Initiative, acutely aware of the threat of genetic discrimination, are seeking legal weapons that citizens can use to protect themselves, report Elinor J. Langfelder and Eric T. Juengst of the project’s Ethical, Legal, and Social Implications Branch. Under today’s laws, [open quotes]there is little to...

Somewhere near the end of a consent form, script, recruitment letter, or brochure, researchers usually state that they will keep information “confidential.” But how is this promise evaluated by the Institutional Review Board (IRB) and kept by the researchers? Given the researchers’ confidentiality plan, the IRB must assess the risks...

The recent expansion of human genetics research has raised complex ethical and regulatory issues. However, few published reports describe the views of professionals involved in human subjects protection (HSP) regarding the risks and benefits of genetic research. This anonymous, web-based study elicited the opinions of 208 HSP professionals about review...

Background. Over the past decades there have been tremendous efforts to improve the ethical conduct of research involving humans throughout the world. As a one-size-fits-all philosophy can no longer work, most countries have developed specific legal and ethical guidelines for research, tailored to their own context. We reviewed South African...