Alex Philippidis writes about recent trends in addressing privacy concerns in genomic studies. He writes, in part:
Dr. McGuire led a research team that published results in Genetics in Medicine last year from their study of consent given to researchers by 323 adults recruited into one of six genome studies at BCM. The adults were randomly assigned into one of three groups: a traditional consent level allowing public data release, a “binary” level with restricted release, and a no-release level.
Before being debriefed by researchers, 83.9% of patients favored public release, 6.6% the restricted release, and 9.6% no release. Following debriefing, however, the majority allowing public release slid to a slim 53.1%, while restricted release leaped to 33.1%, and no-release rose to 13.7%.
Among issues the commission will consider is how broadly or narrowly should researchers secure consent from their patients? Can both be used depending on the circumstance? Dr. McGuire called for more transparency by researchers in explaining to patients how data will be used but added that transparency alone was not sufficient for securing their consent.
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