Randall Parker asks, 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?
This is not a question that just applies to twins. As I noted earlier individuals share ~50% of their distinctive genetic material with their parents and full-siblings. I share ~12.5% with first cousins whom I have never met. If I just released my raw sequence by uploading it somewhere I would implicitly “expose” to a non-trivial degree dozens of people (many without their knowledge).
Of course all these issues were considered by the Genomes Unzipped gang. I think they’re right to judge the risks relatively low. Additionally, there’s nothing magical about genes. Family members can disclose all sorts of phenotypic information, in terms of disease, which would effect those whom they were related to. For example, imagine that an individual gets cancer, and decides to blog about their experience as a form of personal therapy. In theory*, perhaps insurance companies could data-mine the web for these weblogs, and then cross-reference with sites like Intelius and engage in “familial profiling,” assuming that the odds of cancer in the siblings of the blogger was higher than they had assumed prior. Could siblings sue the blogger to not make public their illness in a way that would make it easy for everyone to know of their possible likelihood of cancer? (to make this concrete, imagine we’re talking about breast cancer, and the woman is Jewish, so there’s a non-trivial chance of a BRCA mutation in her relatives) This seems absurd. To many the transparent society is a crazy idea on the face of it. But sometimes I think old ideas of “privacy” in an age of such free-flowing information really need to be revisited.
* In practice my understanding is that insurance companies engage in much coarser profiling, so there really isn’t much to worry about for 99% of people.
Razib Khan’s degrees are in biochemistry and biology. He has blogged about genetics since 2002, previously worked in software development, is an Unz Foundation Junior Fellow and lives in the western US. He loves habaneros.
February 3rd, 2011 at 8:40 pm
Here’s a Wall Street Journal article about insurance companies data-mining the web: http://online.wsj.com/article/SB10001424052748704648604575620750998072986.html
February 3rd, 2011 at 10:18 pm
The rights of family members in DNA is an extremely difficult issue to which, at present, there is no clear answer legally (and seemingly no clear answer philosophically, either).
You’re right that this is something we thought about and discussed prior to launching Genomes Unzipped. See, e.g., http://www.genomesunzipped.org/2010/10/why-public-genomics-is-not-a-purely-personal-decision.php
Also, in answer to Parker’s hypothetical, participants in the Personal Genome Project (PGP) are required to obtain consent from their identical twin (if they have one). Consent is not required of other family members (including first degree relatives), although the consent form urges potential participants, several times, to consult with their family members about the risks and benefits of joining the PGP.
Finally, with respect to the issue of insurance profiling, I note that the situation you describe would be illegal under the Genetic Information Nondiscrimination Act (GINA) if conducted by either (i) employers or (ii) health insurers, including self-insuring employers. So the BRCA example is probably not the best one to use. It would not, however, be illegal under GINA if conducted by long-term care, disability or life insurers (making, I would think, Alzheimer’s profiling a more realistic example), although the practice would likely still be prohibited in some states under state statutes which are more restrictive than GINA.
Hope that’s helpful.
- Dan
February 4th, 2011 at 12:57 am
This issue is not unique to inheritance, let alone genes. It happens all the time the two or more people know some information that affects all of them, and one person decides to go public – often for the most self-centered reasons – to the detriment of the others.
February 4th, 2011 at 1:24 am
Interesting post; commenting because I saw you linked to “Transparent Society”, which seems to have been written by David Brin. David Brin & The Uplift Trilogy rocks!
February 4th, 2011 at 5:18 am
It’s not a good idea to frame this debate in terms of “rights.” Of course you have the “right” to release your own genome sequence and it’s very likely that if you get lawyers involved they will uphold that “right.” (After collecting substantial fees for doing the work.) Your twin, if you had one, would probably lose in court.
The real question is whether it’s ethical or responsible. If your parents and siblings object then you shouldn’t do it. Insisting on your “rights” may make you legally correct but still a despicable, uncaring, irresponsible, person.
And let’s not forget the solution to the insurance problem. It’s called socialized medicine. That’s what you should be fighting for.
February 4th, 2011 at 5:57 am
The “old” ideas of privacy have been revisited in a really fascinating way. Check out Helen Nissenbaum’s book “Privacy in Context.” There she raises a concept of “contextual integrity” which does a really good job (in my opinion) of articulating what we really mean by “privacy” in today’s world.
I’m less concerned about a twin’s rights in their twin sibling’s genome as each individual’s right to his/her own genome. Even identical twins have different genetic expressions and unique somatic mutations – while they share more genetic similarities than non-twin full siblings, they are not absolutely identical (development, or the interplay of genetics and environment that actually creates trait expression is what matters and ultimately distinguishes even “identical” twins). Genotypes and even genetic sequences are boring in and of themselves. I think it’s time we stop being so paternalistic and stop thinking about the legal and ethical issues as they relate to simple Mendelian inheritance and fully penetrant conditions, which are the exception not the rule.
February 4th, 2011 at 8:40 am
@Larry: “If your parents and siblings object then you shouldn’t do it.”
I think that’s far too strong. Irrespective of legal rights, I hardly think that an individual who doesn’t abide by every objection of a first-degree relative is “a despicable, uncaring, irresponsible, person.”
For example, if your parents objected to whom you wanted to marry, would you be within your rights to marry him or her anyway? Legally, absolutely. Morally, I think the answer is “absolutely” as well.
Publication of genomic data might be trickier in some senses, because it has an impact on your first-degree relatives (although, arguably, so does marriage), but that’s all the more reason to avoid bright-line rules. It may be the case that, whatever one’s legal rights, there are some situations where it would be better not to pursue public genomics out of respect for the wishes of family members. (Incidentally, that’s the approach I took with my own family.) But to say that any objection by any family member should be sufficient reason to not publish…well, that’s a step (far) too far for me.
February 5th, 2011 at 10:11 am
I object to your claim. If I demand that you stop making it, and you persist, does that make you a despicable, uncaring, irresponsible person? Or do your opinions have value even if you refuse to knuckle under to other people’s expectations of what you should and should not say?
Socialized medicine will solve nothing relative to this debate. Making the government responsible for deciding who has rights over what parts of their genes complicates matters, it doesn’t simplify them.