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Comment by ianai | Hacker News Reader

When will people place a value on their personal data? A video uploaded with a copyrighted song in the background can be challenged by the IP owner and often is. But even with public outrage over things like PI breaches at Equifax, 23andme gets full ownership of peoples’ dna.

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Let’s play devils advocate - “So what? What is the big deal if my DNA info is out in the public?”

This talk from DEF CON goes into some of the potential risks of sharing DNA. In short, it conceivably opens a person to targeted attacks designed to recognize specific individuals, families, ethnicities, etc.

[0] https://youtube.com/watch?v=HKQDSgBHPfY

Are you comfortable paying more for health insurance because you lost the generic lottery? How about facing persecution because of your ancestry? Hiring discrimination?

(Of course the data doesn't have to be accurate or the analysis correct to suffer.)

First of all, anything can have a downside.

Doesn't seem a big enough concern, how likely I'm going to win lottery?

How about the insurance company? Forced them to lose money?

They won't hire me because my ancestry? Well they are stupid then, it's their lost.

How about you are 3% more likely to develop a chronic illness and as a resut no company touches you for anything except manual grunt work where you could be replaced without much trouble?

More likely the reason to use all data as much as you can to find the cure.

manual grunt work will be replaced by automation anyway regardless of you develop chronic illness or not.

That is a valid observation and completely orthogonal to the point being made.

Which is kinda the plot of the movie Gattaca, where the main character is stuck in low-paying grunt jobs for this reason until he goes to extreme lengths to fake his DNA to get the job he really wants (and is otherwise completely capable of performing well).

Hah, really? Perhaps I should move to Hollywood!

Not at all my point. People OWN their DNA. It’s literally theirs. There should be no question about ownership and the rights associated with owning their data. But we’ve got companies effectively declaring permanent ownership, access, and use of peoples DNA without providing the person with any way to opt out of the database at any point-without providing any payment to the individuals most of the time as well. They even know most of your dna if just one of your relatives sends the company their DNA. It does not matter what you perceive as a risk today to this. It’s your ownership over your dna being claimed by a third party.

You don't own your dna. If you have a twin it is shared for one.

You don't own your fingerprint either. Or your height or weight.

What a stupid argument.

By the same argument all companies don't own their code or IP as soon as it's in someone else's hands.

Companies retain ownership of their code regardless of where a copy ends up because of a legal framework that defines it such, not by default. DNA, fingerprints, et al. need such framework too.

Actually, identical twins don't have identical DNA! See the case of Dwayne and Dwight McNair:

https://www.bostonglobe.com/metro/2018/01/12/man-found-guilt...

DNA is just information, sooner or later it will be spread, and leaked. With the advancement of technology, its just getting easier and easier. Its better to just embrace it. Assume all information is public, and from then on focus on solving the issue that arise from it.

This strikes me as destructive apathy.

Child pornography is information that spreads. I believe society is still healthier if that kind of information is never produced or spread in any form.

The difference is dna data mining has the potential to improve health and cure deseseas.

That's been illegal since 2010.

And besides, 23andme's research data is anonymized.

Then how did they identify a murderer from the dna submitted from a cousin/relative?

You're thinking of the Golden State Killer and GEDmatch.

Although both 23andme and GEDmatch match up relatives, I don't think they share your actual genetic sequence with your matches. 23andme's research and data publications are anonymized.

the user had uploaded their exported 23andme (or similar) data to GEDmatch on their own volition.

How do you anonymize an individual's DNA dataset (600k-900k DNA markers)?

Health insurance discrimination using genetics illegal (GINA), but life insurance and long-term care insurance is not.

1. Genetic nondiscrimination laws are under constant attack (GINA, the most comprehensive, faced significant weakening this Congressional session - fortunately, it appears to be on the back burner for now). That's in the US. Canada has significantly less genetic privacy legislation, and the Trudeau government is negatively disposed to that which currently exists.

2. There is no such thing as anonymous genetic data once you move past extremely small SNP panels. Even if the data is pooled.

We already have hiring discrimination based on gender, race, intelligence and who knows what else... It turns out many of these traits have a large genetic factor (there’s obviously nature vs. nurture ambiguity here too).

The solution is to ban discrimination. Banning a technology that has the power to actually make the world a better place through better medical interventions is not a trade off I want to make in the name of ending genetic discrimination (I write this as an African American).

It’s pretty hard to claim and prove discrimination. I don’t know how an individual person could defend themselves against genetic discrimination. It’s far easier to endow people with ownership of themselves their data and components. Maybe a law that requires dna data to follow a sort of “disclosure of stewardship.” Ie the dna owner has to be given the ability to track, remove, and submit their data - with no “opt-ins” without prior authorization.

But it DOES costs more to insure you in case you have health issues. Your health issues aren't merely a quirk that happen to be correlated with higher chances of needing insurance (such as what people used to say about red cars). They are literally what give you a higher chance of insurance.

The solution is a single-payer system, preferably state-run health care.

You try to get health insurance and provider denies you because you have an allele that makes you susceptible to lung cancer.

Your DNA happens to be at the scene of a crime (you didn't commit). Police do a DNA dragnet. Now good luck getting off that case.

Or worse, the police lab mistakenly identifies you as a DNA match. This happened for years in Houston and people got sent away for a long time before it was fixed

Regarding health insurance, we already prevent insurers from denying coverage based on preexisting condition. Surely we could pass a similar law to cover this case?

And how many times has that protection been challenged by republicans? They’ve voted to repeal it in the republicans controlled house, the senate, filed lawsuits, and the AG stated overturning Obamacare as a goal of the DOJ.

Is this just a "Republicans are the worst" digression, or am I missing the relevance to this thread?

You have a credit rating kept by institutions. That's a wellknown issue - false reports, identity theft etc.

Now imagine a health-reporting institution, used by employers etc. Similar issues will happen - mistakes, failures to update. You get a 'high health risk' rating and can never get insurance again? That's an issue.

That’s an issue now, because of invalid data - having real DNA data would only improve things, no?

That more seems like an issue with your health care system than with the fact that your DNA is out there. Some countries don't have this problem.

You leave a DNA trail everywhere you go. There is no way to keep it private.

Wow these responses seem so naïve. There's a difference between "somebody can get your dna (or fingerprints or location)", and "anybody anywhere can get a record of anybody's DNA, and they (you) have to trust the middleman to be right". Trust that there's no malicious actors, or hackers, or political trickery. On and on and on.

I do not know why the article did not mention it but I think people might feel the case of Henrietta Lacks where there are a lot of thorny questions would be relevant, even though people give their consent to 23andMe now.

Also false positives for DNA matches - overconfidence in results from DNA labs due to popular culture thinking DNA match = 100% guilty combined with numerous controversies over police forensics in recent years, Houston off the top of my head had to throw out every case that their police lab did testing for a range of years due to lab tech incompetence.

My friend got it because she wanted to know what the company has to offer with their service and she is okay, with this service using her data I guess.

I got mine done recently and there are so many fun datamining activities.

Same with ubiome.

Do I care that a company can make a profit? No.. I prefer bsd/mit licease as well for this reason.

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