Risks of Genetic Publicy

post by jkaufman · 2013-03-03T17:30:40.409Z · score: 7 (9 votes) · LW · GW · Legacy · 33 comments

When you walk around you leave your genetic information everywhere. Right now it's not worth it for anyone to do anything with it, outside of DNA profiling in forensics, but sequencing keeps getting cheaper so this may change. Long term, I don't trust genetic data to stay private.

For the near future, however, the details of your genetics probably will stay private. If you want them to. You could, however, sign up for something like the Personal Genome Project or Genomes Unzipped which would make your genetic data public, along with other medical details. If you look at this example consent form there's a long section on the risks, for example:

7.3 ... if you and your partner are both participants you may learn that both of you are carriers for recessive disease-causing variants in the same gene, suggesting a higher risk of severe disease in your children.

This is not what I would consider a risk, in that you still have the option to ignore the information and do what you would have done anyway, you just might not want to. Looking over their other listed risks, the only one that seems significant to me is:

7.1.c Whether or not it is lawful to do so, you and/or a member of your family could be subject to actual or attempted employment, insurance, financial or other forms of discrimination or negative treatment on the basis of the public disclosure of your genetic and trait information by GNZ or by a third party. Although some countries have laws that prohibit certain forms of genetic discrimination, these laws may not apply to you, may not protect against all forms of discrimination or may not stop a third party from discriminating against you even where it is prohibited by law.

The big issue here is health insurance. Economically it's run kind of like an independent insurance business but because what so many people actually want is health care for everyone with shared costs we've tangled it up in knots. So while you might expect insurance against health risks to cost in proportion to those risks, in the US we have the Genetic Information Nondiscrimination Act (GINA) which prohibits insurance companies from denying coverage or charging different prices based on genetic data.

Another issue is employment. If it's public information that you're at high risk for an expensive disease, employers might not want to hire you because we run health insurance through employers. Employers also might not want to train you if they knew you were likely to get a debilitating condition. (Perhaps an astronaut-training program would want to screen out people with heart problems) For both of these, however, GINA prohibits them from doing this.

GINA doesn't cover other kinds of insurance, like life insurance, however. Which makes some sense:

Michael Snyder, the scientist from Stanford, got a glimpse of that himself. After he was sequenced and found out he was at high risk for diabetes, his wife tried to increase his life insurance. (npr)

If people who get unusually worrying results from their tests go to buy life insurance then you have adverse selection, and life insurance gets more expensive for everyone while transfering money to people who got bad news on their tests. One way to deal with this is to buy life insurance before being tested, another is to just decide you don't need it, but if you want life insurance but don't want to buy it yet it's a significant concern.

Are there other kinds of genetic discrimination or other reasons not to make genetic data public?

I also posted this on my blog.

33 comments

Comments sorted by top scores.

comment by satt · 2013-03-04T04:15:53.575Z · score: 7 (7 votes) · LW · GW

By making my genetic data public I effectively make an imperfect copy of my relatives' genetic data public too, making it harder for my close relatives to decide for themselves whether to disclose their genetic data.

comment by jkaufman · 2013-03-04T15:12:59.559Z · score: 3 (3 votes) · LW · GW

I think someone considering this would do well to check with their relatives and make sure they're ok with it.

comment by satt · 2013-03-04T22:25:22.160Z · score: 0 (0 votes) · LW · GW

Agreed. It's not perfect (what if someone decides to have kids after making their genetic data public?) but it's a lot better than nothing.

comment by jkaufman · 2013-03-05T22:39:29.021Z · score: 2 (2 votes) · LW · GW

I think by the time kids are grown it's very likely that keeping genetic data private will be impractical.

comment by Qiaochu_Yuan · 2013-03-03T18:24:41.811Z · score: 7 (7 votes) · LW · GW

Here's a reason to make genetic data public if your genetic data exists somewhere: if it's public, you can't be blackmailed about its contents. This might be relevant to getting hired by the NSA, for example.

(Also, was the title intended to be "risks of genetic publicity"?)

comment by jkaufman · 2013-03-03T20:30:25.063Z · score: 2 (2 votes) · LW · GW

"was the title intended to be 'risks of genetic publicity'?"

I'm using "publicy" as the opposite of "privacy". For example, http://stoweboyd.com/post/797752290/the-decade-of-publicy

comment by NancyLebovitz · 2013-03-03T17:59:56.360Z · score: 5 (5 votes) · LW · GW

People make sloppy guesses about the effects of genes on personality. If you have a gene which is believed to increase impulsiveness, you might have to pay more to borrow money.

comment by Qiaochu_Yuan · 2013-03-03T18:25:03.221Z · score: 3 (3 votes) · LW · GW

Does this kind of discrimination already occur based on race, gender, etc.?

comment by NancyLebovitz · 2013-03-03T20:39:37.207Z · score: 0 (0 votes) · LW · GW

Yes, that's why there's something to be said for being in the unmarked state when it's safer.

comment by Eugine_Nier · 2013-03-04T01:16:40.714Z · score: 0 (0 votes) · LW · GW

What do you mean by "unmarked" state?

Remember the law of conservation of expected evidence still applies.

comment by NancyLebovitz · 2013-03-04T05:00:04.179Z · score: 1 (3 votes) · LW · GW

Being in the unmarked state means that you don't have any trait which is considered so important that it gets more attention than anything else about you. (This definition is what I've deduced from usage, so it may not be the formal definition.)

Blood types in Japan-- if the article is accurate, people with type B blood are stigmatized there because there's a common belief there that blood type indicates personality.

comment by Eugine_Nier · 2013-03-04T05:14:06.798Z · score: 0 (0 votes) · LW · GW

Being in the unmarked state means that you don't have any trait which is considered so important that it gets more attention than anything else about you.

So? The lack of a trait is itself a trait. To use your example of blood types, everyone has some blood type, so what would an unmarked trait be?

comment by NancyLebovitz · 2013-03-04T14:11:45.160Z · score: 2 (2 votes) · LW · GW

The unmarked state is about how much weight people give to a trait, not whether you have a trait. Everyone has a blood type. So far as I know, it's only in Japan that your blood type can affect your chances in life.

So far as I know, whether you have attached or unattached ear lobes doesn't make a difference anywhere, but a cultural shift could turn it into a big deal.

comment by Eugine_Nier · 2013-03-05T01:02:31.267Z · score: -1 (1 votes) · LW · GW

Let's apply this definition to you comment here:

Yes, that's why there's something to be said for being in the unmarked state when it's safer.

You seem to be saying that there's something to be said for having ear lobes rather than a blood type, this seems wrong.

comment by NancyLebovitz · 2013-03-05T04:29:09.839Z · score: 1 (1 votes) · LW · GW

No, I'm saying that there's something to be said for privacy about traits which people will hold against you, and something to be said for living among people who won't punish or exclude you for the traits you've got, especially if those traits are impossible or very expensive to change.

comment by wedrifid · 2013-03-04T05:23:09.981Z · score: -2 (2 votes) · LW · GW

Blood types in Japan-- if the article is accurate, people with type B blood are stigmatized there because there's a common belief there that blood type indicates personality.

comment by ThrustVectoring · 2013-03-05T18:14:31.587Z · score: 2 (2 votes) · LW · GW

One way to deal with this is to buy life insurance before being tested

And then, obviously, cancel said insurance if you don't get bad news (or perhaps negotiate lower rates).

Genetic testing still has adverse selection issues for life insurance.

comment by buybuydandavis · 2013-03-04T01:58:46.296Z · score: 2 (2 votes) · LW · GW

Are there other kinds of genetic discrimination or other reasons not to make genetic data public?

Lots besides health insurance and employment. A whole slew of status issues. There are health conditions that people find embarrassing, stigmatizing, or effecting their status. Exposing paternity would uncover a lot of unpleasant facts about who slept with whom, including racial lineage.

comment by Eugine_Nier · 2013-03-04T01:22:29.222Z · score: 2 (2 votes) · LW · GW

If it's public information that you're at high risk for an expensive disease, employers might not want to hire you because we run health insurance through employers. Employers also might not want to train you if they knew you were likely to get a debilitating condition. (Perhaps an astronaut-training program would want to screen out people with heart problems)

From a utilitarian point of view, why is this a bad thing?

comment by jkaufman · 2013-03-04T15:17:43.624Z · score: 1 (1 votes) · LW · GW

From a personal point of view it is a bad thing. Mary, who is trying to decide whether to get sequenced, doesn't want to become less employable.

From a utilitarian point of view it would be bad if everyone decided that making their genetic data public was too dangerous and so medical science advanced more slowly. This is some of the reasoning behind GINA.

comment by Eugine_Nier · 2013-03-05T01:07:09.546Z · score: 0 (0 votes) · LW · GW

Mary, who is trying to decide whether to get sequenced, doesn't want to become less employable.

Assuming she doesn't know anything about problems with her DNA before getting sequence, the expected effect (in the sense of expected value) of her getting sequenced on her employment prospects is zero. This is a fairly strait forward consequence of the law of conservation of expected evidence.

comment by jkaufman · 2013-03-05T02:16:48.927Z · score: 5 (5 votes) · LW · GW

In our society I expect most uses of DNA findings to be as negative filters. Finding out that someone has a propensity for bad condition X might make them less employable, but people with clean records and people with no records could be treated the same.

You're relying on other people using the law of conservation of evidence.

comment by Decius · 2013-03-03T21:28:09.259Z · score: 2 (2 votes) · LW · GW

I don't see the advantage of publicizing the identity of the donor of genetic information. What is gained by making public the fact 'this genome belongs to this individual'?

comment by madprime · 2013-03-03T21:44:52.869Z · score: 7 (7 votes) · LW · GW

At this point it's clear that genomes can't be anonymous, they can be linked back to an individual's identity. See: http://www.sciencemag.org/content/339/6117/321.abstract

The Personal Genome Project doesn't require people to share their identity publicly, but some participants would rather be public at the outset rather than have that information be pseudo-secret and a topic of gossip. It also opens the possibility of being directly contacted by someone who notices a health issue in your data.

-- Madeleine

comment by gwern · 2013-03-03T22:23:20.296Z · score: 3 (3 votes) · LW · GW

Fulltext: http://dcdc.wustl.edu/PDFs/2013-01-30_Article.pdf

http://www.washingtonpost.com/wp-dyn/content/article/2005/11/12/AR2005111200958_pf.html is an interesting old example of defeating anonymization.

comment by Decius · 2013-03-04T08:10:28.638Z · score: 0 (0 votes) · LW · GW

... And this isn't being (ab)used by police yet?

comment by falenas108 · 2013-03-03T19:57:30.266Z · score: 1 (1 votes) · LW · GW

Why does the life insurance argument not apply to health insurance? If someone finds out they are likely need expensive procedures, they will be more likely to get insurance, and might go for more expensive insurance than they would otherwise.

comment by jkaufman · 2013-03-03T20:27:48.718Z · score: 3 (3 votes) · LW · GW

"Why does the life insurance argument not apply to health insurance?"

Are you saying "why don't we let health insurers charge in proportion to people's risks?" The main reason is that a lot of people really don't want that. A lot of people think of health care as something everyone is entitled to and really don't want anyone suffering because they can't afford coverage. These people usually would also prefer a single-payer universal healthcare system, but because of political compromises with people who see health insurance as a kind of insurance we've ended up in a weird hybrid scenario. (All at once: emergency rooms must treat everyone, universal mandate, smokers can be charged more, people can get high deductible plans, insurers can't charge more for preexisting conditions.)

comment by falenas108 · 2013-03-03T23:43:22.414Z · score: 1 (1 votes) · LW · GW

Well, I was asking either way, which would also include "why can we let life insurance charge in proportion to people's risk."

A possible answer could be that people consider it more important that access is available to health insurance than life insurance.

comment by jkaufman · 2013-03-04T15:20:25.398Z · score: 1 (1 votes) · LW · GW

"people consider it more important that access is available to health insurance than life insurance."

Yes. A common way of thinking about it is that health care is a human right while life insurance is just something nice to have.

comment by ygert · 2013-03-03T20:29:51.277Z · score: 1 (1 votes) · LW · GW

It does apply. The difference is that it is apparently illegal to discriminate for health insurance on that basis. This law however, don't stop this discrimination in life insurance. So, for health insurance, this is banned, and so this isn't an issue there. (Of course, it still is likely that that law is not universally obeyed, and therefore it still is an issue for health insurance as well. But less of one.)

comment by [deleted] · 2013-03-04T13:00:08.923Z · score: 0 (0 votes) · LW · GW

Right now it's not worth it for anyone to do anything with it, outside of DNA profiling in forensics, but sequencing keeps getting cheaper so this may change.

(Marginally) relevant TED talk

comment by Eugine_Nier · 2013-03-04T01:31:54.694Z · score: 0 (0 votes) · LW · GW

7.3 ... if you and your partner are both participants you may learn that both of you are carriers for recessive disease-causing variants in the same gene, suggesting a higher risk of severe disease in your children.

This is not what I would consider a risk, in that you still have the option to ignore the information and do what you would have done anyway, you just might not want to.

The difference is that now you can't without signaling that you don't care about your children possibly getting a genetic disease.