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.

Sample tweet:

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

Reference:

McGuire, A., & Majumder, M. (2009). Two cheers for GINA? Genome Medicine, 1 (1) DOI: 10.1186/gm6

5 thoughts on “I hate to suggest a Nobel Prizewinner is wrong…but…

  1. why

    Why shouldn’t insurance companies be able to discriminate based on genetics? They already do by asking about family history questions. They also discriminate based on physical exams, and medical history. These things can’t be changed any more than genetics can.

    Do you think insurance markets would be better off if we outlawed these practices as well? Carried to the extreme, would insurance be best off if they couldn’t know anything at all about the person or thing being insured? Surely not?

    It’s not clear why it’s better to hide genetic information from insurance companies rather than patients, or doctors for that matter. There are knee jerk rationales to hide this info from insurance companies; but the people making these insurance company hiding arguments dismiss out of hand the arguments that people should not know their genetics.

    Furthermore, is there even proof that doctors provide better care if they know a patient’s genetic pre-dispositions? It’s possible that making genetic information available to doctors causes misdiagnosis, since genetic markers tend to be very fuzzy and indeterminate at this point in time. Studies have shown doctors are susceptible to common statistical misunderstandings, and may focus in on .05% rare illness, that a person is 50% increased genetically disposed towards instead of a similar .2% rare illness they may be only averagely or slightly less disposed towards.

  2. Mary Post author

    You really think that people with bad Alzheimer alleles are going to be able to even get long term care insurance? Seriously? What if I have no family history of Alzheimer’s, but have multiple suggestive alleles–you think they are going to take the chance on me?

    In case you weren’t aware, we just had to pass legislation that outlawed discrimination based on pre-existing conditions to obtain health insurance–because insurers were not playing fair. That does not apply to life or long-term care insurance either.

    And you think insurance company math is going to work in your favor? Have you ever been on the open market for insurance?

    I’m glad you have the confidence that it’s all going to be an even playing field. Best of luck with your alleles.

  3. Shaun

    Nice post Mary. People don’t talk about the shortcomings of GINA enough. And your response here to “why” is spot-on — surely most of us agree that people shouldn’t be discriminated against on the basis of something they have absolutely no control over.

  4. Mary Post author

    Thanks Shaun. Yeah–I don’t know many people who are fans of discrimination based on uncontrollable biology. I was surprised to see that.

    As I was watching coverage of the Republican debate last night I was reminded how tenuous our grasp is even on the pre-existing conditions stuff. That could vanish in the next election too.

  5. Trey

    @why, it’s really a simple principle of how insurance works, shared unknown risks. We all pool our money to pay for risks that we can’t predict. If the risks are known or not shared, insurance doesn’t work. Genomics will make risks more known (we’ll all have preexisting conditions) and unshared (only people with low risks will get insurance for what they are seeking).

    As to family history. I know of no insurance company that researches your family history. At most they ask you in a form, you either don’t know (many of us) or don’t tell. Genomics is sure knowledge that can not be faked. There is a huge difference between the two.

    Much of diagnosis from genomics is indeed fuzzy, I would think most doctors who are using it go with that understanding. That said, there are already many cases where knowing genomic information has been a boon (even in my own family), because you know… more information towards a diagnosis is usually better, not worse.

Comments are closed.