Returning Individual Research Results to Participants: New NASEM Report
ASHG comments on a new NASEM report evaluating issues and perspectives surrounding return of individual-specific research results. Read More
Research Participants
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
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
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
Defining Informed Consent for Genetics Research
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