Research Participants

Providing Input on the Common Rule

Providing Input on the Common Rule

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

Considering Family Privacy in Genetic Research and Medicine

Considering Family Privacy in Genetic Research and Medicine

Genetic information about an individual reveals genetic risk information about both the individual and other family members. ASHG issued a statement in 2000 considering the importance of family medical history in genetics research and its balance with ensuring the genetic privacy of research participants’ relatives, and one in 1998 commenting on this balance in the... Read More