Whats the harm in giving out my DNA results?
February 21, 2013 6:45 AM   Subscribe

I recently had my DNA analyzed by 23andme, and now a friend wants to write about my results as part of a story in a popular national magazine. Normally I'd be fine with this, but I have some concerns about future insurance effects, especially considering one of the results. What, if any, is the real danger in having my name being used with my real results?

For reference, I'm a 30 year old male. Very physically active, with a healthy diet and lifestyle.

All but one of my results came back as expected. No really rare diseases. Prostate and colorectal cancer were a little elevated, but that runs in the family and I was anticipating that. What I was not expecting, however, was my Alzheimer's results. My risk is 6.5x the average rate. It's alarmingly high and roughly at 50%. I'm not totally sure what this means though, just that it is obviously higher chance than the average. I've talked with family members to get family history (no history of it), and looking into other lifestyle changes, but that's not what my question is about really.

My question is that I have a friend who is writing an article about DNA sequencing and wanted to potentially use me and my results. The article would be in a very popular national magazine. And I'm a concerned about insurance implications. I know that the commercial DNA/Genome sequencing is a rapidly growing but new field. So while my results now might not mean much, things are changing at such a pace that 10 years down the line my name and publication of my results could come back to haunt me. I know there are provisions in the ACA that don't allow discrimination by insurance companies anymore, but politics of these situations can change.

There is the possibility that we request to be used as anonymous, but the magazine could reject that idea, and besides anonymity might be detrimental to the articles effectiveness.

How legit are my concerns about insurance? Are there other possible concerns I should think about?
posted by anonymous to Health & Fitness (24 answers total) 6 users marked this as a favorite
I think that you should ask to be anonomized ("I'll call him Steve") and then add your concerns to the discussion -- they seem like an obvious point of interest, and your unwillingness to share your name becomes a (selling) point of the story rather than a distraction/drawback.

I'd be concerned about any publicizing of my DNA analysis, even with the small number of genes we can really look at today. Law in this realm is very much in its infancy, and who knows how things will evolve.
posted by acm at 6:52 AM on February 21, 2013 [25 favorites]

I don't see any good in being named. You can offer to speak to the people at the magazine to confirm your identity/results, if they request that; you're not looking for complete and utter secrecy, just for your actual name not to be published in the magazine.
posted by jeather at 6:56 AM on February 21, 2013 [2 favorites]

I would not worry at all about insurance companies. It would mean a lot of changes in levels of sophistication in medical clearinghouses.

Is there a worry about a future potential employer seeing it in a search and using it to unfairly disqualify you?
posted by MarkAnd at 6:56 AM on February 21, 2013

How legit are my concerns about insurance?

Nobody knows. And for that reason, the magazine will have to accept your request at anonymity. You will most likely talk with the fact-checkers and need to prove it's you and it's highly unlikely that an insurance company is going to go court to get your real name from the magazine and then deny you coverage. At the time you might develop Alzheimer's you will most likely be eligible for Medicare (if it's around) so that may be a moot point.

However, I don't think it's outside the possibility to ask for and receive anonymity -- this is your DNA we're talking about!
posted by amanda at 6:57 AM on February 21, 2013 [1 favorite]

I think the easy answer is that your friend just changes your name. You see this all the time in magazine articles.
John Smith (not his real name), was surprised to see that....

posted by EndsOfInvention at 6:57 AM on February 21, 2013 [2 favorites]

I don't see any reason why the magazine would refuse the article if he used a pseudonym for you. A journalist friend made me the subject of one of his columns and anonymized my name, and his editor had no problem with that whatsoever.
posted by EmpressCallipygos at 6:58 AM on February 21, 2013

Oh, and it was really obviously a pseudonym my friend used for me too (literally - he called me "Sue Donym").
posted by EmpressCallipygos at 6:59 AM on February 21, 2013 [2 favorites]

I would be more concerned about Big Data converging with an aggressive federal health program in the United States. Secondly, I would be concerned about the impact on your future marriage/partner relationships.
posted by Kruger5 at 7:01 AM on February 21, 2013 [2 favorites]

Echoing acm above. The very fact that knowing your disease risk factors is more of a liability than an advantage is a disturbing statement about our readiness to contend with genetic information, as a society.
posted by Cold Lurkey at 7:07 AM on February 21, 2013

There is a federal law prohibiting use of genetic information in determining insurance coverage.

Now, that's with the caveats that this is an evolving field and the limits haven't been tested by any court cases and also that insurance companies can be scummy and underhanded. But you are at least technically legally protected. Pseudonym is still a good idea, if only because people still get kind of weird about this topic.
posted by kagredon at 7:10 AM on February 21, 2013 [1 favorite]

I'm not sure why you are worried about the magazine not wanting to run the story with a pseudonym. It's really, really common. If I were you, I would not want to publish this information with my real name, not for any particular reason, but just because it's very private information.
posted by snorkmaiden at 7:11 AM on February 21, 2013

Ooh, hold on. Just noticed you said your concern is about Alzheimer's. Definitely pseudonym, because I'm not sure how or if GINA would apply to things like long term care insurance.
posted by kagredon at 7:12 AM on February 21, 2013 [2 favorites]

Publishing your name with your results is irreversible. That alone is reason enough to require anonymity.
posted by Capri at 7:24 AM on February 21, 2013 [1 favorite]

I just met with a genetic counselor who said that GINA didn't apply to long term care insurance, so there's another vote for pseudonym.
posted by another zebra at 7:34 AM on February 21, 2013 [4 favorites]

Definitely go the pseudonym route. No federal law protects you from discrimination by life insurance agencies.
posted by mds35 at 7:35 AM on February 21, 2013

No federal law or insurance policy practice protects you from a future potential employer getting a hit on this through google and deciding they don't necessarily want you on their group plan, assuming you're in the US. You'd just hear that "another candidate was a better fit."
posted by availablelight at 7:55 AM on February 21, 2013

GINA may protect you if an insurance company asked to swab your mouth during an application, but it's a whole different story if you publicly go on record saying "I have proof that I'm a higher risk for lung cancer". Vote for pseudonym.
posted by JoeZydeco at 8:05 AM on February 21, 2013

Considering all the answers you've gotten here, it might be better to look at it as 'What's the benefit in giving out my DNA results?'

Because there are almost certainly no benefits to you, only possible detriment. And since none of us can see into the future...I'd err on the side of caution. Especially since I cannot imagine how using a pseudonym could be detrimental to the article's effectiveness.
posted by Salamander at 8:15 AM on February 21, 2013

So when I use pseudonyms for interview subjects, the questions editors ask are "Why?" and "Will the person verify the story with fact-checkers?"

As long as you'll do the latter, there should be no problem, because the "why?" is obvious.
posted by Sidhedevil at 10:17 AM on February 21, 2013

Yeah, I personally wouldn't worry about health insurance but long-term care and life insurance don't have the same protections - though I can't comment on the likelihood of an insurance company reading the article and starting a file on you, should you ever apply (or googling your nams should you actually apply). For what it's worth, I'm speaking from the perspective of having several chronic conditions, being the daughter of a clinical geneticist and being a employee benefits attorney.
posted by Pax at 10:18 AM on February 21, 2013

Not an expert, but in my work at a large national health group one of our attorneys (actually an expert) gave specific advice regarding the incompleteness of protections in genomic medicine and discouraged even using personal genetic testing services like these.

GINA is a start, but our attorney suggested that the loopholes are significant and potential issues are not well understood considering the rapid pace of technology related to genomic medicine.
posted by forkisbetter at 10:44 AM on February 21, 2013

Just putting in another vote for anonymity if at all possible, especially since I reread this and noticed your Alzheimer's results. Pax, forkisbetter, mds5, and another zebra are dead on that the Genetic Information Nondiscrimination Act only protects you from discrimination by health insurance companies, not long-term care insurance, disability, or life insurance. There is no benefit that I can see (as a clinical research person with experience in genetic studies) to having your actual factual name on this and quite a bit of possible harm.
posted by House of Leaves of Grass at 5:45 AM on February 22, 2013

Even if companies were allowed to use your genetic material against you and were planning on doing so, do you know how easy it is to get some? You're constantly shedding skin and hair, the cup you threw out has saliva on it, etc. Keeping your genetic makeup secret is going to be impossible (see Gattaca, etc.), so stringent laws on its use is the best we can do.
posted by Brian Puccio at 6:42 AM on February 22, 2013

This friend should not use your real name. It is against HIPPA allowing you to have privacy and right to YOUR healthcare access. What he needs to do is de-identify you. There is NO reason--journalistic or not--to identify you with a real name. Male, age X is what needs to be identified--not where you live, who you are, etc.

For pre-existing discrimination, the ACA doesn't allow for pre-existing discrimination BUT Life Insurance? You bet your sweet dippy it does.

So tell him to get creative with his point without identification.
posted by stormpooper at 8:41 AM on October 29, 2013

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