Public Participation in Research

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

Responding to Allegations Against James V. Neel

Responding to Allegations Against James V. Neel

In his recent book Darkness in El Dorado, journalist Patrick Tierney alleged unethical behavior by James V. Neel, a former president and ASHG Allan Award recipient. ASHG finds these allegations to be gross misrepresentations and basically false. Related: Response to Allegations against James V. Neel in Darkness in El Dorado, by Patrick Tierney (January 2002) 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

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