Public Participation in Research

ASHG Issues New Guidance Addressing Underrepresentation in Genomics Research Through Community Engagement

ASHG Issues New Guidance Addressing Underrepresentation in Genomics Research Through Community Engagement

The American Society of Human Genetics (ASHG) today published a new Guidance on community engagement as a strategy to address underrepresentation in genomics research. Appearing in today’s issue of the American Journal of Human Genetics (AJHG), this new resource was developed by the Society’s Community Engagement Guidance Writing Group, comprised of members of the ASHG... Read More

The Importance of Universal Ethical Standards in Science

The Importance of Universal Ethical Standards in Science

Long-standing ethical principles for genetics research help respect and protect research participants, and they are especially important for preventing harm to marginalized or vulnerable populations. Recent reports allege that several genetic studies conducted in China may not have secured individuals’ consent for their participation freely and without coercion. These reports reinforce the need for ASHG... Read More

Supporting Research Participant Privacy

Supporting Research Participant Privacy

S. 2744, the Genetic Research Privacy Protection Act, was introduced in the Senate in 2016. This bill, supported by ASHG, would guard against the inappropriate use of the Freedom of Information Act to gain access to research participants’ genetic information, and would build on existing privacy protections by strengthening Certificates of Confidentiality. Its provisions were... 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

ASHG uses cookies to provide you with a secure and custom web experience. Privacy Policy