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 is no consensus on the issue. They argue forcefully for a middle ground, citing the “rule of rescue” (i.e., if you see something life-threatening and actionable in a genome, then you have a moral duty to say something) as a reason to disclose, but view full disclosure of whole-genome data with contempt….
As a famous person once said, I am what I am. Knowing one’s raw sequence isn’t going to change the world. Most people are not going to brush up on on their scripting languages to try and interpret it. I’m not opposed to paternalism per se, but it needs to have some plausible basis, and, it needs to confront the fait accompli that cheap sequences are going to be reality within this decade.
This post should probably be in a link round up, but Mischa’s post is very good, and needs to be read. I am not as hopeful about the wisdom of the public as most, but, this sort of response is not grappling with the problems of free information realistically.