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Results for “Committee on Genetic Experimentation”

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PubMed2003

Governing population genomics: law, bioethics, and biopolitics in three case studies.

Existing scholarship on population genomics has only superficially addressed issues of power and political process. Accordingly, questions of politics and governance pervade the analysis of three population genomics case studies that follow: the Human Genome Diversity Project, Iceland's Health Sector Database, and "Clinical Genomics" as defined by the Beth Israel-Ardais collaboration. An examination of these case studies reveals that the common law, U.S. regulatory law, and international law have not developed the political sophistication to make the traditional promises of biomedical ethics--respect for autonomy, justice, and beneficence--come to fruition. Further, comparisons of these projects illuminate three areas ripe for reframing--informed consent, expert ethical oversight, and commercial benefits. Four avenues of reform are suggested.

Advisory Committees↗
PubMed2004

Protection of health research participants in the United States: a review of two cases.

Two research-related deaths and controversies in the United States during recent years have raised public concern over the safety of research participants. This paper explores the reasons why, in two studies, there was a failure of ethical oversight. The issues exposed by these failures have international relevance as they could possibly occur anywhere where human health research is carried out. Five factors that contributed to these failures are highlighted: 1. failure to support and resource research ethics committees; 2. failure of the research oversight process to adequately assess the risks and benefits of research, while giving undue emphasis to informed consent; 3. conflicts of interest arising from financial relationships and research ethics committee membership; 4. lack of consistent oversight of privately funded research; and 5. incompetent or intentional failure to adhere by ethical guidelines. There is considerable headway to be made in the United States, as in other countries, in the fostering and maintenance of robust systems of human research oversight.

Academic Medical Centers↗
PubMed2002

Gene therapy in the post-Gelsinger era.

As gene therapy research races to a first cure of a genetic-based disease, the research community has struggled with the aftermath of the well-publicized death of Jesse Gelsinger from complications of an experimental treatment. In a wrongful death lawsuit against the University of Pennsylvania and its researchers, Jesse Gelsinger's family alleged violations of federal regulations and research ethics. This article reviews gene therapy research, examines the role of the key players in this tragedy, and provides suggestions for preventing future misfortunes.

Adolescent↗