October 16, 2011
Ask Parents Before Publishing Genetic Test Results?

Back in April 2011 Razib Khan released his 23andMe Genotype v3 test results into the public domain. Larry Moran has objected to this on the ground that Razib's family should have some say given their partially shared genetic sequences. Razib offers his views on whether family members should be consulted about release of genetic data.

Larry Moran thinks that I had to ask my parents and siblings for permission before publishing my genotype. Interestingly, most of his readers seems to disagree with Larry on this, so I wonít offer my own response in any detail. Theyíre handling it well enough. I would like to add though that obviously this isnít a either/or proposition. If my family had a history of a particular genetic disease which was well characterized in terms of causative alleles I might not have published my genotype. As it is, we donít. So I didnít see much of a downside. I would also add that in my case It wasnít possible to have genuine consent in the first place. My mother isnít much into science, and we donít share a common first language. Thereís really no way that I could have gotten substantive consent, insofar as my mother understood what I was doing.

I've previously raised a starker version of this ethical question in a post about whether an identical twin should be able to publish their genetic testing results without permission of the other twin. In that case a discussion between the twins would likely be from a similar level of understanding of the consequences (twins being likely to have same spoken language, similar cognitive abilities, a great deal of shared experiences and context). Plus, the potential impact on the other twin is greater because it basically amounts to publishing that other twin's full genetic sequence without consent. Are twins ever going to sue each other over the making of their sequence public?

Razib raises an interesting question about informed consent. The early adopters of genetic testing and genetic sequencing understand it better than the larger public on average. When full genome sequencing costs fall to the few hundred dollar level and full scale genetic sequencing becomes commonplace most people won't understand the detailed consequences of full disclosure. Of course, people do things all the time which have consequences that they are unaware of. Should we treat this any differently? I doubt it.

Razib and Larry Moran debate the issue in the comments of Razib's post. We learn, among other things, that Razib speaks Bengali at the level of a 5 year old. I figure he's being modest and is at least at the 7 year old level.

The debate in the thread is focused on the extent of our social responsibility to family members and whether we are all autonomous beings without obligations that come as a result of who we are related to. But I think other obligations and benefits are more important. In the discussion thread "LIttle bit" explains her reasons as the mother of an autistic child for publishing her own genetic testing results publicly: help research into autism.

As someone who published their 23andme v2 results publicly, Iíll weigh in on the subject: Should I have consulted with my family? Perhaps, I was remiss in not doing so. Truthfully, they would have either not understood the implications or cared one way or another. I donít think my results are pertinent to my family members without phasing, and any suspected anomalies can be errors in processing or de novo.

So why did I do it? There was an undercurrent of paranoia at 23andme about sharing, and a push by the FDA to ban DTC tests Ė I was vocal in my opposition to both. I felt that disclosing my results publicly was important to show I was genuine in my stances. I am also the mother of an autistic child, and felt that having my results out there (just maybe) could help someone with a suspicion, but not the data set to observe. Yes, it may be a pipe-dream, but you never know.

Crowd sourcing genetic data, health history, dietary choices, adverse drug reactions, food sensitivities, physical attributes (e.g. height, hair color, weight, eye color, facial shape, finger length ratios), cognitive attributes (e.g. online IQ test results, educational attainment), and other personal information has the potential to greatly speed up the rate of discovery of disease causes, the meaning of many genetic variants, and other areas of understanding of human health and human nature. In my view the people brave enough to publish their genetic results (whether under their own name or with their name hidden from researchers) and other information about themselves are doing us all a great favor. They are enabling "bottom up" biological science which is going to accelerate the rate of biomedical advances. We need to consider the future lifesaving treatments that will come from this research when discussing genetic privacy questions.

Share |      Randall Parker, 2011 October 16 10:35 AM  Bioethics Privacy


Comments
razib said at October 16, 2011 7:50 PM:

But I think other obligations and benefits are more important.

bingo!

PacRim Jim said at October 17, 2011 1:25 AM:

Online medical records will make it easy to steal the medical records of others for blackmail, etc.
Also, online medical records could be hacked, resulting in incorrect medical care or genetic treatment.
Other drawbacks are readily imagined.

Dentin said at October 17, 2011 9:09 AM:

There's a simple answer to this: publish everything. We have open source code for the majority of systems on the internet; why not open source code for people too?

I can somewhat understand the desire to keep medical records private; but genetic data? Really? I don't think so.

As soon as my genes are sequenced, I'm posting the whole thing publicly.

jay said at October 17, 2011 12:30 PM:

This only works if you don't mind insurance companies using the information to assess the risk of insuring you and your relations. I think many people would have a problem with sharing that information freely if it can be used to disadvantage them or their relatives at some time in the future. Even the most bioscience ignorant person should be able to understand the notion of losing control of their health risk information.

Xiaoding said at October 17, 2011 1:12 PM:

Since DNA can now be manufactured, I can use your coed to set you up for murder, or any other crime.

Have fun talking to the police!

The False God said at October 17, 2011 3:56 PM:

If DNA cannot be copyrighted, then what about copyright regarding DNA therapies derived from specific lineages? If a mutation from your genetics or lineage is used to treat any medical condition, do you have automatic rights to royalties derived from the treatment, since you are the basis upon which the treatment was derived?

I think the issue exposes a fatal flaw in our legal definition of copyright. By all rational consideration, there's no reason that you should not be able to publish your DNA sequence, EVEN if you have a twin. You can, after all, use your family name in business without your family's permission. If it's something that is explicitly yours (and your genetic pattern is about as "you" as you can possibly get), then what right do others have to dictate how you use it? Don't you also have control over who can make use of it? It's you, after all.

Dentin said at October 19, 2011 10:46 AM:

Jay, this ill conceived complaint, that insurance companies might use the data unfairly, has a simple and obvious solution: make it illegal, like other forms of insurance discrimination already are. Of course it's not perfect, but no solution ever will be. It merely has to be "good enough", where good enough is a remarkably low standard at this point in time.

The very idea that fear of insurance companies should hold up medical research by limiting access to data is absurd. We should be pushing the research as hard and fast as we possibly can - the sooner we understand and can fix health problems, the sooner the price will crash to the point where insurance can become a hedge instead of the balkanized 'group price negotiator' system it is now. Getting the data out there ASAP is critical to that venture.

Mthson said at October 19, 2011 1:24 PM:

Dentin, great points. The US congress already made discrimination on the basis of genetic data illegal a few years ago.

Steven said at December 1, 2011 5:50 PM:

I definitely think that parents should be consulted before releasing genetic data in most cases. I think that if the data is used for ediscovery in legal cases, there should be separate rules. I can understand how the the data can help speed up the discovery process to many things, but I think that it is only fair to protect the rights of people first.

Mark said at April 30, 2012 7:17 AM:

I can also understand how the data can help speed up the discovery process. I do however think that they need to be careful of how they store the genetic data. Will they be using some type of data center services to store all of this genetic data?

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