Following my recent article on ethical guidelines for informed consent in genomic studies, a group of scientists met at the Translating ESLI conference in Cleveland to debate this whole ethical argument. This issue is particularly critical for genome-wide association studies and in establishing and using large biobanks.
It was universally acknowledged that consent forms are difficult to read for participants who do not have reading skills beyond middle school or high school, for example. As a result, these paticipants may be unaware of what exactly the research could mean to them.
Laura Beskow, a researcher at Duke University’s Institute for Genome Sciences and Policy worked …read more