What are the risks of having your genome publicly available?

post by Mati_Roy (MathieuRoy) · 2020-02-11T21:54:35.303Z · score: 15 (9 votes) · LW · GW · 5 comments

This is a question post.

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  Answers
    18 technicalities
    9 gorthaq
    8 G Gordon Worley III
    5 leggi
    3 avturchin
    1 Andrew Jacob Sauer
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5 comments

Answers

answer by technicalities · 2020-02-12T10:09:30.294Z · score: 18 (12 votes) · LW · GW

Ooh I know this one

https://www.gleech.org/genes-out/

  • Health insurance
  • Adversarial dirt
  • Increased police attention, false positives
  • DNA framing
  • Releases info about my family members
  • Probabilistic homophobia (etc)
  • Mate choice

Plus a few I wouldn't worry about even if I lived 500 years (signature bioweapons, clones)

answer by gorthaq · 2020-02-12T21:50:54.394Z · score: 9 (6 votes) · LW · GW

One aspect of this would be future possibilities of targeting viruses, poisons et cetera to a specific genome. But such targeted bioweapons seem more likely to be broadly targeted to ethnic groups. See e.g. here. A more general answer would be that by making your genome publicly available you also share all inferences that can be made form your genome with anyone who wants to make them. The set of inferences that can create risks for you do not only include the ones that are accurate and scientifically robust, but also all such inferences that gain some credibility in a society -- which means that you are at risk, generally, to become a target based on real or fictional properties of your genome.

answer by G Gordon Worley III · 2020-02-12T01:36:06.242Z · score: 8 (5 votes) · LW · GW

I'm not sure, but my guess is that most of the risk lies in the future, i.e. the risks are in things that might be possible to do later that aren't possible to do now. I say this both because it doesn't seem very dangerous right now and because I can imagine ways in which it would be dangerous, albeit as an outsider to biology, epidemiology, and genetics.

answer by leggi · 2020-02-12T06:41:19.414Z · score: 5 (4 votes) · LW · GW

Publicly available and identifiable as you?

If you have genetic markers for various diseases present in your genome potential employers, insurance companies etc. could use this information - most likely for their benefit rather than for the benefit of the individual so I'd class this as a big potential risk that should be considered.

Some other risks/benefits based on perspective:

Your genome matches with something on a criminal database for a crime you've committed in the past and you get caught.

Your genome leads to a partial match on a criminal database for crime committed by a blood relative. They get caught

You happen to be a good genetic match for someone who needs body parts and isn't adverse to using yours without asking permission.

answer by avturchin · 2020-02-12T09:40:30.604Z · score: 3 (4 votes) · LW · GW

One minor risk: someone will create a baby using your genom and theirs and you have to pay child support.

answer by Andrew Jacob Sauer · 2020-02-12T07:47:44.808Z · score: 1 (1 votes) · LW · GW

Uh, if you're worried about UFAI I'd be more concerned about your digital footprint. The concern with UFAI is that it might decide to torture a clone of you(who isn't the same as you unless the UFAI has a ton of other information about you, which is a separate thing) instead of somebody else. It doesn't seem that much worse from a selfless or selfish point of view.

comment by Mati_Roy (MathieuRoy) · 2020-02-13T03:23:13.140Z · score: 1 (1 votes) · LW(p) · GW(p)

I personally would rather an FAI be able to bring me back than preventing an UFAI from doing so

comment by Andrew Jacob Sauer (andrew-jacob-sauer) · 2020-02-13T07:45:10.052Z · score: 1 (1 votes) · LW(p) · GW(p)

No way I'd take that bet on even odds. Though I do think it's better than even odds. It's kind of hard to figure out how I feel about this.

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comment by gwern · 2020-02-13T03:28:58.886Z · score: 16 (6 votes) · LW(p) · GW(p)

It's worth noting that the Personal Genome Project was created ~2008 in part to test this question empirically: participates upload their genomes to the PGP website where it is 100% public, and they are periodically surveyed and asked if they have experienced any harms from their genome being available. As far as I know, the several hundred/thousand participants have yet to report any substantial harms happening.

comment by Raemon · 2020-02-13T06:17:24.576Z · score: 8 (5 votes) · LW(p) · GW(p)

I do expect most of the harms to live in the moderate future though. It's not that surprising that we haven't, like, invented Gattaca world yet.

comment by leggi · 2020-02-13T08:36:05.959Z · score: 5 (4 votes) · LW(p) · GW(p)

Have any less substantial harms been reported?

The PGP doesn't "intentionally associate" a name with a genome. From the terms and conditions of PGP here.

9.1 No Confidentiality After Publication. If you are enrolled in the PGP and choose to publish any of your data to the PGP’s public website and database, that data will not be kept or made available by the PGP in a confidential or anonymous fashion. The PGP will not require any collaborators or other individuals accessing your information to keep the information in a confidential or anonymous fashion. Unless you withdraw from the study before your data are published, your genetic and trait data will be made available via a publicly accessible website and database. 9.2 Association of Your Name With Your Data. The PGP will not intentionally associate your name with your genomic or trait data or other information that is published to the PGP’s public website and database or otherwise intentionally identify you as a participant in the PGP without your prior consent. However, as described above, because of the identifiable nature of the information you provide to the PGP, as well as the nature of the data and analyses generated by the PGP, it is possible that one or more third parties may identify you as a participant in the study. This may result in the association of your published data and other information with your name or other information that you have not provided to the PGP and may not have wished to be publicly disclosed. 9.3 Efforts to Preserve Confidentiality Prior to Publication. Before your publication of specimen analysis data, the PGP will use reasonable efforts to preserve the privacy and confidentiality of such data, as well as other information you provide to the PGP in a private Protocol #: 15461 Harvard University Faculty of Medicine IRB PGP Consent Form Page 20 of 24 Revision 2015.05.05 manner (your name, answers to safety questionnaires and communication with project staff). You should be aware that the public disclosure of this information may still happen due to unintended data breaches, including hacking or other activities outside of the procedures described in this consent form. For this reason the PGP cannot guarantee that information you provide to the study, or that is generated about you by the study, will be maintained in a confidential manner.

Risks come with your genome being identifiable as you.

comment by Adele Lopez (adele-lopez-1) · 2020-02-12T05:19:09.848Z · score: 13 (7 votes) · LW(p) · GW(p)

There's an upper limit to how relatively bad it can be due to the fact that you are shedding copies of your genome in public all the time.

comment by jmh · 2020-02-12T18:01:39.806Z · score: 2 (3 votes) · LW(p) · GW(p)

I'll put this in as a comment rather than answer as I do not know these are actual risks, or might become risks.

With your genome publicly available I suspect you might currently face a risk of being a prime suspect in a crime if it involved anyone you knew fairly well. If the DNA found at the scene -- and there will be a bunch that can be found -- is then found on some searchable DB you get tied to the scene perhaps a bit more readily.

If your DNA is the only DNA they can match I suspect you might move to the top of the list.

How serious one thinks this might be likely depends on one's faith in law enforcement's interests in getting the truth rather than getting a win. Additionally, some might have concerns here based on race or ethnicity, sad to say.