I hate to suggest a Nobel Prizewinner is wrong…but…
He is. But it’s not his fault. A lot of people have this wrong.
There’s an article in the Australian press that is getting some buzz. Nobel Laureate Barry Marshall (of ulcer-causing bacteria identification fame) is talking about the personal genomics wave that’s coming our way. It’s been picked up and re-tweeted quite a bit, including by the followers of Kurzweil, who are tech early adopters in a big way.
RT @EdwinRankin: Genome power is about to sweep world: Nobel laureate | KurzweilAI http://bit.ly/jM8slS via @kurzweilainews
I have no quibble with the fact that “genome power is about to sweep the world”. But I have issue with a tidbit within the story. Now, it’s not a direct quote so it may be a mis-characterization of what was actually said. But here it is:
What’s right: Australia should legislate against discriminatory practices based on genetics. Everyone should.
What’s wrong: The US did not legislate against discriminatory practices like higher life insurance premiums. Aussies should aim higher than our current legislation.
I have been a giant fan of the GINA legislation since I saw Louise Slaughter introduce it while I was in her district in grad school. OpenHelix actively supported the lobbying for that legislation–despite knowing that it was only a baby-step towards the protections we really need. And we celebrated wildly when it actually passed and was signed into law. It definitely is a major advance in US policy.
But: it does NOT protect you from discrimination for life or long-term care insurance.
The Genetic Fairness coalition assembled a nice guide to GINA. What does GINA mean? A guide to the Genetic Information Nondiscrimination Act. From this page we find this statement, which couldn’t be clearer:
“The protections of GINA do not include protections from genetic discrimination in life, disability, or long-term-care insurance.”
Now, if you find yourself with some unfortunate Alzheimer alleles, would you be interested in some of that insurance potentially?
Even a lot of American biomedical researchers I know aren’t aware of the limitations of GINA. And people who come from places where there is a public health care system may not grasp the real problem with this situation.
I wish we did have more protection. And I wish we had universal health care rendering this a non-issue. But wishing doesn’t make it true.
I’m delighted that Barry Marshall has the level of financial and medical security to release his full genome data to the world. I wish we all did. He is right that this wave is coming for us all. He is wrong that we in the US are safe from misuse of the data by life insurers. But it’s nice to have powerful allies who understand the importance of not discriminating based on these data.
You can follow Marshall on twitter: @barjammar
McGuire, A., & Majumder, M. (2009). Two cheers for GINA? Genome Medicine, 1 (1) DOI: 10.1186/gm6