S/O Cancer Gene in Iceland

[orriskitten]

I just read this article: grapevine.is/News/ReadArticle/decode-genetics-wants-to-contact-carriers-of-breast-cancer-gene

Its pretty common in Iceland for Icelanders to donate blood/saliva/other things with DNA (I honestly don't know, just know that deCode has a lot of genetic material to work with) towards research since the country is a fairly uniquely isolated place with a very narrow gene pool. Essentially, it is a great place to do genetic research as a control group with relatively few outside influences.

They can trace the cancer genes in these samples, but the samples were not for that purpose specifically.

What do you think? Should deCode be allowed to contact the donors who have it, unsolicited? Should there be a waiver that donors have to sign saying they want to know?

Also, DH used to work for deCode before grad school and the company keeps making the news. They are really achieving some amazing things and making potentially huge discoveries.

[orriskitten]

DH just told me that people who donate sign a waiver saying that DeCODE will never link them personally to the results. They generate codes for each person so they can be anonymous. Essentially the question at stake here is whether or not they should go back on that point in their waivers and link names to results.

ETA: People can choose to opt-in to get their results, should something be found. But that would have been done at the time of the donation.

[orriskitten]

May 16, 2013 12:03:56 GMT -5 @therealmc said:

Nope, they should definitely not be allowed. They should, however, make it publicly known that if you want to know, you can contact them.

I agree with this. I was more conflicted before DH told me about the original waiver saying they wouldn't be connected unless they wanted to be.