Research Participants

ASHG Supports Genetic Privacy Provisions in 21st Century Cures Act

ASHG Supports Genetic Privacy Provisions in 21st Century Cures Act

Media Contact: Nalini Padmanabhan ASHG Communications Manager 301.634.7346 press@ashg.org For Immediate Release Wednesday, December 7, 2016 2:45 pm U.S. Eastern Time BETHESDA, MD – The American Society of Human Genetics (ASHG) commends Congress for strengthening privacy protections for genetics research participants as part of the 21st Century Cures Act (H.R.34) passed on December 7. These... Read More

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

Engaging with Research Participants

Engaging with Research Participants

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

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

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