3 ms·

Could a sort of escrow be setup to manage these kind of issues? By this I mean that if the gene researcher finds something significant she can post it to a sec

Could a sort of escrow be setup to manage these kind of issues? By this I mean that if the gene researcher finds something significant she can post it to a secure site with pre-established anonymized ID. The anonymous donor can check this site with their special ID ... if they so choose so. I'm sure there are flaws to this, but it seems like some sort of solution could be devised that allows sensitive information to be passed on to the anonymous donors without the researcher knowing who that donor is.

JunkDNA 14y ago
At most institutions, there already is such a system in place. Research subjects are typically anonymous to the research team, but there's a 3rd party "honest broker" who maintains the link. It's not a technical problem as much as a policy one. The issue is that with most research studies the patients sign a consent that goes over the parameters of the research. Most consents in most institutions for years have had the clause that research results wouldn't be returned. Part of this is that research is, well, research. So you never know what you're going to find and it's usually very speculative, full of hand-wavey equivocations. Sometimes it's just not practical to re-contact people. Even in cases where it is, the research team is very often not in a position to offer primary medical care, so now you're burdening a doctor with test results they didn't ask for and might not be able to interpret. Finally, research usually doesn't employ the very strict guidelines that are in place for clinical diagnostics (since these limit how fast you can analyze data and push the envelope). Tubes can get mixed up, results can be just above the level of noise. All that is par for the course in research because you're supposed to be on the bleeding edge (well no excuse for tube mix-ups, but I digress...). Returning results has the potential to add overhead to a research study, and for some, might make the entire study cost prohibitive (if genetic counselors and specialty care docs have to be on hand to interpret results for patients). Also, you run into the specter of "incidental findings" with genetic tests. For example, while health insurers can't discriminate on the basis of genetic tests, I'm pretty certain life insurers can. So a high predisposition to early onset Alzheimers might force a person to pay higher rates (or not be able to get life insurance at all). They will forever have to check the box next to "Have you ever been told by a doctor that...."
- 001sky 14y ago
  while health insurers can't discriminate on the basis of genetic tests, I'm pretty certain life insurers can. - good to know

JunkDNA 14y ago

At most institutions, there already is such a system in place. Research subjects are typically anonymous to the research team, but there's a 3rd party "honest broker" who maintains the link. It's not a technical problem as much as a policy one. The issue is that with most research studies the patients sign a consent that goes over the parameters of the research. Most consents in most institutions for years have had the clause that research results wouldn't be returned. Part of this is that research is, well, research. So you never know what you're going to find and it's usually very speculative, full of hand-wavey equivocations. Sometimes it's just not practical to re-contact people. Even in cases where it is, the research team is very often not in a position to offer primary medical care, so now you're burdening a doctor with test results they didn't ask for and might not be able to interpret. Finally, research usually doesn't employ the very strict guidelines that are in place for clinical diagnostics (since these limit how fast you can analyze data and push the envelope). Tubes can get mixed up, results can be just above the level of noise. All that is par for the course in research because you're supposed to be on the bleeding edge (well no excuse for tube mix-ups, but I digress...). Returning results has the potential to add overhead to a research study, and for some, might make the entire study cost prohibitive (if genetic counselors and specialty care docs have to be on hand to interpret results for patients). Also, you run into the specter of "incidental findings" with genetic tests. For example, while health insurers can't discriminate on the basis of genetic tests, I'm pretty certain life insurers can. So a high predisposition to early onset Alzheimers might force a person to pay higher rates (or not be able to get life insurance at all). They will forever have to check the box next to "Have you ever been told by a doctor that...."

001sky 14y ago
while health insurers can't discriminate on the basis of genetic tests, I'm pretty certain life insurers can. - good to know