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People want to be asked before sharing genetic data
Date:8/31/2010

SEATTLEPeople want to be informed and asked for consent before deciding whether to let researchers share their genetic information in a federal database. This is according to a team of investigators at Group Health Research Institute and the University of Washington (UW). The team's report, called "Glad You Asked," is in the September 2010 Journal of Empirical Research on Human Research Ethics.

To the team's knowledge, it is the first to ask research participants' opinions about the need for informed consent for sharing their own information. The team explored participants' preferences while collaborating on the Electronic Medical Records and Genomics (eMERGE) Network. The Network involves volunteers enrolled in the joint Group Health-UW Adult Changes in Thought (ACT) study. ACT is a longitudinal cohort study that tracks aging-related changes in thousands of older Group Health patients over time.

When the team asked Group Health patients who participate in ACT whether their "de-identified" (anonymous) genetic and medical record information could be shared in the database, 86 percent said yes. Then the team surveyed 365 ACT study participants who had agreed to let their genetic information be shared, mostly because of a "desire to help others." In the survey, 90 percent of participants said they thought it was important to have been asked for this reconsent.

Reconsent means getting additional informed consent from research participants before using their information for a purpose beyond what they agreed to originally. Alternatives to reconsentincluding opting out, being notified, or neither individual permission nor notificationwere unacceptable to 40 percent, 67 percent, and 70 percent of the surveyed participants, respectively.

"We were surprised that so many people felt it was important for us to ask them, even though they decided to give their consent," said lead author Evette Ludman, PhD, a senior research ass
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Contact: Rebecca Hughes
hughes.r@ghc.org
206-287-2055
Group Health Research Institute
Source:Eurekalert  

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