This summer I took TNG to the Portsmouth Air Show to enjoy viewing aerobatics and looking at some aircraft up close. As with many such events, there is a vendors section & at this one I came across the Caitlyn Raymond Bone Marrow Registry. Curious to check out someone else's consent form, experience a buccal swab & contribute to a good cause, I signed up. Quick & painless. It's also only the second time I've consented to have my own DNA analyzed, and the first professional job (we sequenced one polymorphism from each student in an undergrad class at Delaware).
I don't regret that decision, but one part that was a bit odd at first was filling out my medical insurance information. Okay, someone has to pay for the DNA testing but it seemed a little odd to stick my insurance with it -- but I didn't give it a lot of thought at the time. Since that time, I've regularly seen the registry at various community events as well as a kiosk at the local mall.
Yesterday's Globe had an article causing me to revisit that memory. U Mass Medical Center runs the Caitlyn Raymond registry, and someone there saw a dubious opportunity and ran with it. The lead for the article focused on the fact that professional models had been used as greeters at many events, helping a very high recruitment rate. Okay, that could be seen as just creative. But, the back end is that U Mass has been charging as much as $4K per sample for testing. YIKES! That's in excess of what I've heard BRCA testing goes for. Now U Mass will be getting a lot of attention from a number of attorneys general.
One point in the article is a concern that the use of models may compromise the informed consent process. The proof, as it continued, will be if registrants from the Raymond pool fail to follow-through with donations at an unusually high rate, but given that most will never be contacted it may never be known.
But it got me thinking: since the testing is purely a DNA analysis, then presumably each complete human genome sequence can be used to type an individual. Perhaps even the tests from 23 et al* hit the right markers, or at least some tightly linked ones.
So, is it ethical to reach out to such individuals? Given that I could, in theory, search the released DNA sequences from the personal genome project, would it be reasonable to try to track one down and beg for a donation? Of course, the odds of a successful match are tiny -- but as more and more PGP sequences pile up, the chance of such a search succeeding go up.
What about non-public DNA databases? Again, suppose a 23 et al had the right markers (or nearly so). Should you have to opt-in to be notified that you are predicted to be a possible donor match? Is there a mechanism to publish profiles to a central database, with an ability to ping the user back if a match is made? And if every newborn is being typed for a few thousand other markers, will testing for transplantation markers also be required?
* -- a great term, I believe originated by Kevin Davies in his $1K genome book.