February 03, 2011
Genetic Privacy And Identical Twins

Suppose you have a right to genetic privacy. You might believe you do. Suppose you have an identical twin. Suppose the identical twin decides to publish his (or her) genetic sequence on the web. Do you have the right to stop this?

People who have identical genetic sequences each can get themselves sequenced and then release their genetic data for all the world to download and study. But when an identical twin does this another person also gets their genetic sequence released to the world.

So should twins be able to legally stop each other from publishing their shared DNA sequence on the web?

Share |      Randall Parker, 2011 February 03 07:19 PM  Bioethics Privacy


Comments
Jody said at February 4, 2011 4:38 AM:

So should twins be able to legally stop each other from publishing their shared DNA sequence on the web?

No. Twin B does not "own" Twin A's genetic sequence in any meaningful way. That they're almost entirely the same sets of information has no bearing.

Analogize this to me wanting to publish the list of design defects I've encountered with my 98 Ford Escort and asking if other 98 Ford Escort owners should be able to stop me.

rob said at February 5, 2011 9:05 AM:

The privacy concerns are even broader than this. Last year, 2 years ago maybe, a serial rapist(?) was identified from DNA. The crime scene DNA wasn't matched to a sample of the criminal's DNA, it was matched to members of his family. The cops then figured something along the lines of 'hey, if this guy has Y chromosome of this one dude, and is the sibling of this other criminal, he's probably person XYZ who lives at ___.'

Releasing your genetic sequence gives information about your relatives whether you or they want to. I don't think many reasonable people would prohibit taking DNA samples from felons because it violates the privacy of their relatives.

Russ said at February 5, 2011 10:23 AM:

Identical twin here.
I have ZERO call on what my twin brother does with his body. Rob's example isn't a privacy issue so much as an example of piss-poor police work.

jt said at February 5, 2011 12:38 PM:

Small point of contention, Russ.

Isn't it an example of awesome, serial-rapist-catching police work? I fail to see how any operation that took a rapist (that may not have otherwise been caught) off the streets was a "piss-poor" effort.

Randall Parker said at February 5, 2011 4:07 PM:

Jody,

I do not see how the analogy to the 98 Ford Escort works. How are Ford's interests harmed or the interests of other Escort owners harmed if you publish the list of design defects?

The person whose twin publishes their genetic sequence suddenly has to worry about future reactions of insurance companies, potential employers, and potential mates among others. As more becomes knowable about a person from their genetic sequence more will become known about both twins.

Jody said at February 6, 2011 5:05 AM:

Randall - Take your same examples and apply it to a car:

Insurance companies - if it's unsafe at any speed (or similar), the car is uninsurable. By releasing this info, I just made every other Ford Escort car uninsurable
Potential employers - probably can't get a traveling salesman job with a lot of driving where the employee supplies the car.
Mates - Oohh - look at their bad taste in cars, wouldn't want to date them. Though admittedly a lot of this is created by virtue of it being an Escort.

Sure every problem there can be fixed by throwing money at it, but the same holds for genetic conditions.

Insurance - pay a higher premium.
Employers - offer to take a lower wage
Mates - hookers and surrogate mothers.

There's lots of examples of identifiable sets of people that share some amount of information (common home builder - suppose they like to leave cocaine in the drywall, common high school - suppose it comes out that it facilitated cheating on SATs or extra inflated GPAs).

You're asserting genetic information is a special kind of information. I'm asserting it's not.

Russ said at February 6, 2011 7:05 AM:

Hrm... after re-reading it, I can see where he was going, jt.

Randall Parker said at February 6, 2011 2:31 PM:

Jody,

Lots of people use the same car model. You basically own a copy of the 98 Escort and so do many others. So you compare with each other. It is like twins comparing with each other what diet works. But your information about the Escort isn't much interest to the vast bulk of us.

Though I see your point: Potential 98 Escort buyers are in the same boat as potential employee hirers. They want to know what they can about the model before making a deal to use it.

But I see a difference in the area of exploitability. You can potentially use a person's genetic info to exploit them. For example, you can (or will be able to in the future) assess what their genes say about their impulsiveness. Imagine the marketers knew the details of impulsiveness of every person in a society. They'd tempt all those impulsive people into more self-destructive buys.

Lono said at February 7, 2011 1:01 PM:

Russ,

You really need to reassert control over your better half!

Seriously though - if I had any identical siblings they would be doing my bidding from day one - I honestly don't understand why other people so value their own clone’s autonomy?

Where is the profit in that??

LL said at February 8, 2011 1:29 PM:

This goes down a slippery slope... Can children prevent parents from publishing their DNA? If both parents DNA is known then all the possible DNA variations of their children can be extrapolated from that info. Probabilities can be assigned to what genes you possess. Also if you know some of the phenotypes of the children then a lot more narrowing can be done.

You can still do the same exploits Randall is talking about: assess what their genes say about their impulsiveness. Imagine the marketers knew the details of impulsiveness of every person in a society. They'd tempt all those impulsive people into more self-destructive buys.

-LL

dustydog said at February 8, 2011 4:52 PM:

Stupid question.
I have more than 50% of my brother's genetic code, and we aren't twins. I have 50% of my Dad's genetic code. A quarter of my cousin's genetic code. More than 99.95% of my genetic code is just like yours. Virtually the same as for an identical twin.

Should I have the right to stop genetic researchers? They are essentially invading my privacy! Likewise all pharmaceutical research. Figuring out what drug X will do in humans with disease Y is a clear invasion of the medical privacy of all humans with disease Y.

RnBram said at February 11, 2011 10:22 AM:

what *privacy* is lost? How can the information be used to violate privacy? In terms of what harm can be done with it one's DNA is less informative than a picture from a security camera. As for violation of one's basic Rights, the DNA code might be used for purposes of fraudulent identification just as stolen PIN numbers are misused.

The problem is that gov't laws must pursue crimes perpetrated by criminals with real victims, and not get all tangled up in laws with no victims. When and if privacy is truly breached, the breach-er should then be charged. Never should a law block a technology on *speculation* that it might be misused. Only obvious threats, such as dangerously built nuclear power or chemical plant, should be required to meet known safety standards. After that, the company that causes harm must, by law, reimburse its victims. With that kind of legal culture, new companies will know that doing harm could result in their failing.

Tom West said at February 13, 2011 1:00 PM:

Can children prevent parents from publishing their DNA?

Well, something close to this has already happened.

(Adult) child wants to get tested for Huntington's which causes because it runs in her family on her mother's side and it would affect her decision to have kids, etc. The mother has not had herself tested, feeling it will severely impact her life if she knows she has it.

If the daughter tests positive, then the mother must also be positive.

It's pointless hiding the results, since the daughter intends to act upon them in an obvious fashion.

Ouch.

Mary said at August 3, 2011 10:46 AM:

What about the adopted kids in Argentina who tried to prevent their DNA from being analyzed?

http://www.personalgenomics.us/1170/adoptees-dna-is-not-a-match-for-2-families-in-argentina/

Did they have the right to decline? Did people who thought they might have a claim have the right to demand their DNA?

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