After thinking about it I agree with MacArthur’s position, i.e. that research participants should generally be provided with complete access to their own genetic data upon request. With “Upon request” being the key word. So, here are my responses to the above comments:

Mohan, if the data that I could be provided with is so un-actionable (at least at this present time), then it is pretty much harmless to provide it, right? but more importantly, the fact that the data is in a difficult form for useful consumption right now doesn´t mean that it won´t be useful in the future. As a participant I just want the peace of mind to be able to easily provide this info to some doctor who may be able to use it in case I have a hard to diagnose condition of some sorts. Other use cases can be thought of.

Alan, you explain well the difficulty of having to return research results to participants, but you seem to approach it from the perspective of having to return the results to all participants. A monumental task for a project that may take a long time. I don´t think that is what is being debated, I simply want to be able to request the information myself if I choose to and to know how to proceed with that. I think this would increase participation at very little expense. There could even be some modest fee to prevent frivolous requests and fund the request mechanism.

Anyway, on grounds of principle I will not participate in the RPGEH study.

Thanks for your time and feedback.

PS. On a lighter note, could it be that people who think like myself, i.e. take the time to think about their participation on the grounds being discussed here, are putting some bias into the study? Could it be that this group I belong to carries some common genes, that makes us think/behave like this, that are possibly correlated with self preservation ability and longevity? and this group is now absent from the study… Depending on your viewpoint the genes in question are the “self preservation and thoughtfulness” genes or the “annoying conspiratorial troublemaker” gene, and could affect longevity either positively or negatively… take this P.S. with tongue in cheek and a big grain of salt….

Currently, patient consent documents generally don’t require researchers to return research results obtained by study of the patient’s blood, tissue, DNA or other biological samples. There are practical reasons for this. Research subjects can be difficult and expensive to track down (they die, move, change name). Moreover, even if you could track down a particular research subject, you’d not only need to provide them with the research data, but explain what the data means. Note that many studies use samples obtained as a result of routine medical procedures (e.g., cancer biopsy) or other purposes unrelated to the research, and the subject may not even be aware that the sample was used for the research.

In general, returning research data to subjects would require a complete rethinking of biological research on human subjects. That may be a good thing in the long run, but such a rethinking needs to take into account all of the ramifications, including increased expense, more difficult recruitment, the need for persons trained in patient education and counselling, subject tracking, etc.