Guest blogging at Genetic Future Mischa Angrist has a post up critiquing the defense of the lack of disclosure of genetic/genomic information to research participants. Mischa begins:
Readers of Genetic Future, Genomics Law Report and Genomes Unzipped are likely well acquainted with questions of returning genetic and genomic results to research participants. Recently, those questions have become more acute as the cost of sequencing continues to nosedive. Whole genomes and whole exomes of potentially identifiable people are suddenly everywhere. Thus, even though you might only be studying the genetic basis of Crohn’s disease or epilepsy, you might find that you have every participant’s and every control’s complete cellular hard drive, i.e., his or her full set of protein coding sequences and all the variation therein, at your disposal. What’s a poor PI to do?
In a new article in Trends in Genetics, Annelien L. Bredenoord and colleagues from University Medical Center in Utrecht, the Netherlands, provide a useful overview of the various points of view about whether genetic data should be returned to research participants, and if so, which data, under what circumstances and by whom. The authors note, as I do in my book, that there …