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'Recruitment by genotype' for genetic research poses ethical challenges, study finds
Date:6/28/2012

(Garrison, NY) A potentially powerful strategy for studying the significance of human genetic variants is to recruit people identified by previous genetic research as having particular variants. But that strategy poses ethical challenges to informed consent, as well as potential risks to the people recruited, and it is unlikely that there is a "one-size-fits-all" solution, concludes an article in IRB: Ethics & Human Research.

The advantage of "recruitment by genotype" is that it eliminates the time-consuming, expensive process of screening new populations to find subjects who have the genetic variant of interest. The ethical challenge is that it requires the disclosure to individuals of genetic information discovered about them in prior research for example, research on tissue samples that they donated for scientific study. Such information can carry risks and harms because it is often preliminary and easily misinterpreted, and it may be unwanted by some individuals. But without this information, potential participants would be uninformed about why they are being recruited for the new study.

As the first step toward developing ethical guidelines on genotype-driven recruitment, the authors conducted an online survey of 201 chairs of institutional review boards (IRBs). The survey asked a series of questions about 1) the conditions that should be met before recontacting individuals for genetic research recruitment, and 2) whether individuals' genetic research results from the first study should be disclosed as part of the recruitment process for the second study.

The responses were diverse and in some cases contradictory. Only 37 percent of IRB chairs agreed with the general statement, "Researchers should be allowed to contact participants in one genetic research study in
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Contact: Michael Turton
turtonm@thehastingscenter.org
845-424-4040 x242
The Hastings Center
Source:Eurekalert

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