I think those of us (yes, I’m looking in the mirror) who complain loudly when an article we want to read is trapped behind a pay wall have an obligation to call attention to our own work when we–or our generous benefactors–have paid (in this case, $2800) to make it open access. So…here you go. Regular readers will recognize a familiar refrain:
For decades scientists and ethicists have debated the merits and risks of returning and withholding research results from research participants…Recently, those questions have become more acute for genetic data in particular as the cost of DNA sequencing continues to nosedive. Research studies of whole genomes and whole exomes of potentially identifiable people are suddenly everywhere. Thus, even though a given study might be focusing only on the genetic basis of, say, Crohn’s disease or epilepsy, a researcher might find that she has every participant’s and every control’s complete ‘cellular hard drive’, that is, his or her full set of protein coding sequences and all the variation therein, at her disposal. What’s a principled principal investigator to do?
Download the whole thing here.