Brad Perriello at MassDevice interviewed me and posted the article in their popular e-newsletter on the medical device industry. You can read the interview here. Brad caught me a little off guard when he asked me what I considered to be the ethical implications of individuals having access to their genomes.
In a couple of words, I think people have a right to information about their own genomes. But, privacy is critical and the society has to be careful not to let the “payors” use this information against us. I haven’t delved into the specifics of GINA, but I’m pretty sure this law was enacted to to protect us from just this kind of information misuse.
My good friend, colleague, trained geneticist, amateur photographer and head of scientific applications at GQ Henk Heus (check out his photo site here!) wrote me a note adding these ideas to the the discussion:
Henk says:
“Besides the medical insurance policies, and incomplete data, there are a number of other issues that I can think about. Mostly that it’s difficult to let people understand what a 19% increase of risk really means for them. It’s not black & white, there are always tricky interactions between multiple genes and environment involved. I think we can wait for the day that someone undergoes some radical medical treatment (like removing breasts because of possible increase risk of breast cancer), only to find out that it was not needed (knowledge incomplete, risk factor inaccurate). People will get sued for a lot of money, and regulation may follow.”
“The other thing is: ignorance is bliss. If there is some late-onset disease for which there is no cure, do you really want to know about it? Especially if it runs in the family and you’ve experienced its effects close by. There should be a right not to know, and that can be difficult with your genome sequence out in the open.”
Thank you Henk for these thoughtful remarks.
50 years of computer evolution and molecular biology are on a convergence course to change the course of society. Exciting times we live in, don’t you think?