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Using social media in clinical research: Case studies address ethical gray areas

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If a public-health researcher is reviewing Facebook profiles of 14-year-old males for firearm references and discovers photos or words referencing a potentially threatening situation, should the researcher intervene? What levels of privacy should these children expect in the online world?

These are the kinds of difficult questions that ethics consultants are faced with as they attempt to provide moral and legal guidance to researchers gathering health-related data from the Internet.

To help researchers with these nascent ethics issues, the Clinical Research Ethics Consultation Collaborative, a group of almost 50 bioethicists who provide free or low-cost ethics consultations across the United States, has begun publishing case studies on its most ethically challenging cases. Thus far they’ve posted 40 case studies in the categories of behavioral/social science research, clinical trials, genetics, pediatrics, research misconduct and surrogate decision making. The site also includes information on how to participate in educational webinars and collaborative case discussions.

This effort is being led by Benjamin Wilfond, MD, at Seattle Children’s Research Institute and University of Washington, and Mildred Cho, PhD, at the Stanford Center for Biomedical Ethics.

“Our bioethics consortium has learned a great deal from the complex ethics consultations that we’ve been providing since 2005,” said Cho. “Now we have a strategy for sharing these best practices with others, to provide moral and legal guidance to researchers across the country and to better inform policymakers on evolving ethical gray areas.”

More information on the collaborative or to request a consult can be found on this website.

Previously: The challenge – and opportunity – of regulating new ideas in science and technologySocial media brings up questions, ethical unknowns for doctorsBuild it (an easy way to join research studies) and the volunteers will come
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