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"?)
"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
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.
I think someone considering this would do well to check with their relatives and make sure they're ok with it.
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.
Yes, that's why there's something to be said for being in the unmarked state when it's safer.
What do you mean by "unmarked" state?
Remember the law of conservation of expected evidence still applies.
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.
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?
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.
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.
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.
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.
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?
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.
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.
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.
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.
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'?
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
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.
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.
"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.)
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.
"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.
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.)
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.
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.
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:
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:
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:
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.