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Human Genome Research and the Public Interest

December 20, 2016

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 research, education, and public discussion … Continued

Social Policy Issues in Genome Research

December 20, 2016

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 discourage employers from using genetic … Continued


December 20, 2016

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 related to participation, including risks … Continued

Attitudes Toward Genetic Research Review

December 20, 2016

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 of genetic research. The majority … Continued

A Critical Review of Health Research Ethical Guidelines Regarding Caregiver Consent for HIV Research Involving Minors in South Africa: Ethical and Legal Issues

October 18, 2016

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 (SA) ethical guidelines and Health … Continued

An Evaluation of the Middle East Research Training Initiative Tool in Assessing Effective Functioning of Research Ethics Committees

August 31, 2016

The effective functioning of a research ethics committee (REC) can be evaluated using self-assessment tools. The Middle East Research Ethics Training Initiative (MERETI) tool can be used by one member, typically the Chair, to score an REC. The consistency of these scores across several members of an REC has never been evaluated. This study examined … Continued