update: “the story is unavailable”… https://thinkprogress.org/ancestry-com-takes-dna-ownership-rights-from-customers-and-their-relatives-dbafeed02b9e/
There’s a subtle flaw in the reasoning here that becomes obvious to me in this paragraph: the idea that “DNA” information is, somehow, ownable, and that because you “own” a piece of your relative’s DNA, that you are giving up “ownership” of their DNA within this license.
In short, this is a piece intended to stoke the fears of people who have limited understanding of the science behind the test, with very little basis in fact or practical use. In reality, the license that Joel Winston grants to ThinkProgress for his article is probably no different than the license granted to AncestryDNA for your genome: in both cases, there are a series of letters that are uniquely produced as the work of an individual- a different individual would produce a different series of letters, and while those series of letters says something uniquely identifying about the person (in the case of the article, a statement of Joel’s politics and knowledge of the underlying test) which may or may not be used against them at some future date.
To imply that because some percentage of the “genotype” is identical to some other blood relative and that therefore you transfer “ownership” of that “segment” of your relative’s DNA is entirely disingenuous. In reality, most of the DNA in humans is, more or less, identical, and all humans are consanguineous with our most recent common ancestor, therefore by analogy the “owner” of any full sequence becomes the “owner” of 99.9% of the DNA of every human being on earth. On its face, the argument falls apart
What is transferred is not an exclusive license- AncestryDNA has no special hold on those combinations of base pair letters. Any customer can take their genome from any number of sequencing companies, and no company has an exclusive right to that combination of letters, no matter whether or not those are held privately, say, in a safe in the customer’s possession or printed on a webpage for the world to see, say at a public genome sharing site such as the PGP.
Furthermore, it is a blatant misunderstanding of what exactly a “genotype” from AncestryDNA “is”. It is not a complete sequence- it is a collection of some common difference noted between people. The individual letters printed are often separated by thousands of basepairs. Individuals will have hundreds of millions of additional differences not recorded in the genotype. For example, the STR (short tandem repeat, “stutters” in the coding of DNA that are vastly different between individuals even within a single generation) sequences used by forensic testing need only about a dozen or so locations to uniquely identify individuals and (in many cases) determine degree of relation, and likely have some coincidental correlation with certain health conditions however small, even though these sequences have no identifiable causative relation to diseases. To imply that any subsampling of a small fraction of known differences between people in any way conveys some irreducibly true destiny for that individual is a frightful conceit- it is no different than looking at the color of a person’s skin, the shape of their eyes, the color of their hair, and saying you know some irreducible truth about the person. It is racism, pure and simple, and Winston is, in essence, stoking our fears that some hidden, identifiable mark will be used against us the way each and every day we use the color of our neighbor’s skin against them.
I recognize that not everyone wants to be a DNA firebrand such as myself- for more than 5 years, I have been publicly sharing large portions of my genome. For anyone to take any portion of my genome and “hold it against me” or any of my relatives is no more or less absurd to take the color of my skin, my hair, and hold that against me or them. The very act of sharing this information publicly reduces the risk that any one company can use that information for private gain- I have, in essence, put my very nature and that of all humans consanguineous with me in the public domain, free to copy, free to pirate, and free to use for any purpose, good or ill.
Rather than evoking some lurking spectre, as though there is some nefarious plot to design a virus which would seek out and infect anyone even slightly related to *me*, we need more honest discussion of the actual value of said data. I understand the need for a “license”- it is such that if AncestryDNA uses the test kit and the fact that they know I am a white male, and then uses my genotype to develop marketable products such as “% Neanderthal” or “% Orkney Islander”, they have a distinct need for ownership of the data used to determine who is “100% Orkney” since no human being on earth is likely to be “100% anything” due to the rampant admixture of all peoples of all continents. What they hold is a synthesis of all their customers, which they paid to acquire through advertising and discounted kits. No one customer’s data is worth more than $0- it is the aggregate collection of all the kits that then has value, the ability to compare and contrast the differences. But in order to compare, you must have rights to inspect the individual pieces. You transfer this right by granting any company the right to sequence your data, they are simply making that relationship legally verifiable and inspectable.
At its root, a mere genotype sampling of 1 million positions among the 3 billion possible letters of a full genome is no more meaningful than a phrenologist’s reading of every bump on your head, a race theorist’s counting of the angle of your nose and jaw and the color of your skin. To portray a genotype as some back door way to a darker time in our history when we would murder a man for having the wrong color of skin is not an impossible scenario, but not because any company might own that random aggregation of letters. You might just as well argue that the census, or a preference survey, could do the same- we should call racism for what it is- an unscientific excuse to favor oneself over the rights of others.
We should oppose that, not the aggregation of incidental and coincidental data. We should oppose the misuse, not the fair use.
We should dismantle the police state, the widespread databasing, fingerprinting, and de-personing that happens every day for offenses as small as stealing a loaf of bread.
Identity is not destiny- we should honor and respect not only the unique identity of every human being, but also, recognize the deep connection and identicality of all human beings at the genetic level. If you forget that what separates you from your fellow human brothers and sisters, be they one block or half a world away, is just a few flipped bits on a painting so utterly similar you could not distinguish it at any scale from one another, you are inhuman. You are a racist. You are the problem.