Realizing the benefits of human genetics and genomics research for people everywhere.
In response to a 2011 request for information, ASHG submitted comments on the Advanced Notice of Proposed Rule Making for “Human Subjects Research Protection: Enhancing Protections for Research Subjects and Reducing Burden, Delay, and Ambiguity for Investigators.” The Society proposed adjustments to the review, approval, and follow-up for studies that will facilitate research and improve... Read More
In his recent book Darkness in El Dorado, journalist Patrick Tierney alleged unethical behavior by James V. Neel, a former president and ASHG Allan Award recipient. ASHG finds these allegations to be gross misrepresentations and basically false. Related: Response to Allegations against James V. Neel in Darkness in El Dorado, by Patrick Tierney (January 2002) Read More
In 1999, ASHG and the Genetic Alliance organized a workshop designed to examine the conduct of human genetics research. Workshop attendees identified themes related to research conduct, proposed a new model of relationship between research and participants, and developed a consensus statement and recommendations to advance the new model. Related: Genetic Lay Advocacy Groups: Significant... Read More
American Society of Human Genetics is committed to protecting the rights and welfare of those who participate in genetics and genomics research. In separate statements, the Society examined different aspects of informed consent, including the use of family medical history of research participants, and the use of collected samples and proper disposition of samples and... Read More
In 1999, the National Bioethics Advisory Commission requested feedback on current regulations, practices, and ethical issues related to the use of human biological materials in research. ASHG commented on many of the recommendations in the NBAC’s draft document and provided additional expertise. Related: ASHG Response to NBAC on the Ethical Issues and Policy Concerns Surrounding... Read More