Public Participation in Research

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

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

Advising on Use of Biological Materials

Advising on Use of Biological Materials

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

Defining Informed Consent for Genetics Research

Defining Informed Consent for Genetics Research

In a 1996 statement on informed consent, ASHG reviewed general considerations and specific research situations, including research using prospectively collected samples, consent disclosures, disposition of samples and results, and retrospective studies of existing samples. Related: ASHG Statement on Informed Consent for Genetic Research (August 1996) Read More

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