DNA papers, please
Kuwait is planning to build a complete DNA database of not just citizens but all other residents and temporary visitors. The motivation is claimed to be antiterrorism (the universal motivation!) and fighting crime. Many are outraged, from local lawyers over a UN human rights committee to the European Society of Human Genetics, and think that it will not be very helpful against terrorism (how does having the DNA of a suicide bomber help after the fact?) Rather, there are reasons to worry about misuse in paternity testing (Kuwait has strict adultery laws), and in the politics of citizenship (which provides many benefits): it is strictly circumscribed to paternal descendants of the original Kuwaiti settlers, and there is significant discrimination against people with no recognized paternity such as the Bidun minority. Plus, and this might be another strong motivation for many of the scientists protesting against the law, it might put off public willingness to donate their genomes into research databases where they actually do some good. Obviously it might also put visitors off visiting – would, for example, foreign heads of state accept leaving their genome in the hands of another state? Not to mention the discovery of adultery in ruling families – there is a certain gamble in doing this.
Overall, it seems few outside the Kuwaiti government are cheering for the law. When I recently participated in a panel discussion organised by the BSA at the Wellcome Collection about genetic privacy, at the question “Would anybody here accept mandatory genetic collection?” only one or two hands rose in the large audience. When would it make sense to make mandatory genetic information collection?
Leaky and social genomes
In the panel I made the argument that genetic information is inherently leaky. It is not just easy to copy once decoded, but we leave DNA traces wherever we go. Hence keeping it secret is not very feasible. However, we may place valid moral demands on how the information is used: that is genetic privacy. The information belongs to us and is inseparable from who we are (despite not determining who we are), so morally we should have a strong say in how it is handled just as we should have a strong say in how we are treated.
The leakiness of genetic information is also tied to family: if you learn my genome you have statistical information about other members of my family. The more genomes you know in a population, the more you can map out genetic relatedness and past personal history. Except “relatedness” is in practice not a genetic property but a social property. The problem in Kuwait is of course that (perceived) genetics is largely the base of citizenship and discrimination.
But even in a country that is absolutely fair, we may still balk at mandatory handover of genetic information. Leaving obvious practical issues such as security and misuse aside, the real problem is that it is an infringement on privacy for no commensurable gain.
Most discussion of involuntary genetic testing has been considering it as a medical issue, and then informed consent is typically paramount. If it does not help a patient to be treated in their best interest, or there are overriding resource considerations, then it is presumably unacceptable. But this is not a medical case (although, presumably Kuwait’s health care systems could make use of the data, something I haven’t seen mentioned in the controversy).
It is hard to make genetic screening a proportional response: like much intelligence-gathering excused by fighting terrorism it is indiscriminate and based on a faith that in the future the collected information will be both useful and used for the intended, legitimate uses. Gathering biometric information for identifying people well at the border or when becoming citizen is proportional: being able to establish and maintain an identity is important both for the individual and the state.
Mandatory reporting of communicable diseases is proportional: although medical information is just as vital as genome information (sometimes more so), the public interest in not having the disease spread is greater than the privacy interest.
Some might think that improved identity management will be in the public interest: as a journalist in Kuwaiti Times wrote, she approves of using it to solve mysterious crimes, especially terrorism or murder, detecting lineage and, indeed, in getting Kuwaiti nationality. But clearly crimes are being solved and citizenship determined already without genetics: the question is whether the addition makes a great difference. That seems unlikely in the criminal cases (DNA evidence is fairly hard to handle), terrorism is unlikely to be prevented by knowing genomes, and in the nationality case brings to the foreground that the public interest might be broader than citizenship. Non-citizens are also members of Kuwaiti society and should morally have their interests represented and respected. Given that it is fairly likely that the infringement in privacy would have detrimental effects on them, it cannot be said to be in the public interest.
To sum up, while mandatory genetic testing might make sense if it gave a strong benefit to all members of the public and had little cost, in the Kuwait case the benefit is fairly tenuous and unevenly distributed, and the costs unevenly distributed and particularly affecting vulnerable groups.
Why is privacy good? One part of an answer is that you need a space that is yours, free from outside demands and judgement, to be authentically yourself. Another part is that for societal purposes, we need to be able to shape our views and thoughts freely before making them public – we must be allowed to learn, be in error, and update without fear of retribution. It makes sense to demand mental privacy, and quite plausibly much physical and social privacy.
But genetic privacy? At first glance nothing seems more private than our genome. It makes us who we are. But we are not that determined by it. It is a foundation, not the entire house. Our environment, chance, and self-shaping also makes us who we are, and assigning the genome mystical power over our destiny or nature is just a mistake. (A mistake that easily leads to genetic determinism and ideas that people with the “wrong” alleles are worse by nature.) We are not exercising much authenticity by having it unknown, and we do not revise our genomes (yet).
We may want to keep sensitive information that could cost us our jobs, insurance or peer respect secret. Yet it is hard to do, if we are releasing copies of our genome with every skin flake. Secrets have short half-lives. Rather, we want to ensure that nobody picks up those flakes and uses them against us. Or more likely, that nobody searches through a database and uses our information against us. But this has less to do with technology and more to do with culture and governance.
We all know everybody farts, but we are better off ignoring this inconvenient fact most of the time. We overhear and see private things all the time, and polite and well-adjusted people deliberately ignore them. Organisations are legally obliged to ignore certain facts such as race when judging people. We chose what information we know is “socially known” rather than private, and this choice is a social (and hopefully ethical) agreement.
Similarly we may choose how to socially judge genetics. Much of this is recognizing where the information truly matters. Even if it is trivial to decode somebody’s genome, it is a weak guide to who they truly are. Hiring people based on genotype rather than actual performance is a mistake. We make trade-offs about whether insurers, pharma companies or (shudder) advertisers should be given access. Our safeguards should be against “genetic racism” and genetic determinism, not reading our own genomes or sharing them if we wish. This is part of a bigger need for tolerance and forbearance in an ever more transparent world.
Mandatory handover of genetic information is not going to help tolerance.