Barbara Prainsack is at the Department of Social Science, Health & Medicine at King’s College London. Her work focuses on the social, regulatory and ethical aspects of genetic science and medicine.
More than seven years ago, my colleague Gil Siegal and I wrote a paper about pre-marital genetic compatibility testing in strictly orthodox Jewish communities. We argued that by not disclosing genetic results at the level of individuals but exclusively in terms of the genetic compatibility of the couple, this practice gave rise to a notion of “genetic couplehood”, conceptualizing genetic risk as a matter of genetic jointness. We also argued that this particular method of genetic testing worked well for strictly orthodox communities but that “genetic couplehood” was unlikely to go mainstream.
Then, last month, a US patent awarded to 23andMe – which triggered heated debates in public and academic media (see here, here, here, here and here, for instance) – seemed to prove this wrong. The most controversially discussed part of the patent was a claim to a method for gamete donor selection that could enable clients of fertility clinics a say in what traits their future offspring was likely to have. The fact that these “traits” include genetic predispositions to diseases, but also to personality or physical and aesthetic characteristics, unleashed fears that a Gattaca-style eugenicist future is in the making. Critics have also suggested that the consideration of the moral content of the innovation could or should have stopped the US Patent and Trademark Office from awarding the patent.
23andMe responded to critics a few days ago by arguing that the company currently uses the patented technology only in the form of a Family Traits Calculator that offers parents-to-be to see what phenotypic characteristics their offspring is likely to have. The company also stated that although the remit of the patent is wider, they “never pursued concepts discussed in the patent beyond or Family Traits Calculator, nor do we have any plans to do so”.
I am not worried about human reproduction going Gattaca. I agree with those colleagues who maintain that there is a qualitative difference between selecting gametes to prevent severe diseases and selecting for other traits. I do not believe, however, that such practices will become so widespread, or so technologically accurate, that they will damage society. The controversy about 23andMe’s most recent patent is instructive in a different sense: It shows what happens when traditional corporate governance clashes with the rhetoric of open science.
As I argued elsewhere, what we have learned from past experiences with controversies over 23andMe’s patent claims is that what critics held against the company was not primarily the fact that they filed for patents. What aggravated them was the lack of open communication about this. Sigrid Sterckx and colleagues, in their recent paper in Genetics in Medicine, make a similar point when they state that 23andMe’s attempts to seek patents “are not inherently problematic. However, for a company that invites audience participation, and so needs customers and their goodwill to maintain and expand its most valuable asset, i.e., its biobank, it is surprising that, following the uproar that greeted the announcement of its Parkinson disease patent, 23andMe has pursued this patent with no apparent public discussion”. Sterckx et al. conclude by calling for “maximal transparency by all engaged in human genetics research”.
This is an important point, but the issue is not limited to human genetics research. 23andMe, like other web-based companies and initiatives in the health domain, mobilize the rhetoric of citizen science and participatory medicine very strongly. These domains comprise many enterprises that attempt to align profit orientation and health idealism. Some do this for purely self-serving reasons (e.g. to avoid reputational damage that hurts business interests). In other cases, however, questions about the social value of what they are doing are deeply intertwined with commercial goals. The trajectory of some enterprises that started out as patient- or activist-led grass root initiatives and then later turned commercial, yet without losing their initial health mission entirely, is one reason for this.
It is becoming increasingly obvious that such companies and initiatives cannot have their cake and eat it too: They cannot employ the rhetoric of participation, openness, and citizen science while at the same time hiding behind the excuse that they are “a regular commercial business, and we’re doing nothing illegal”. Openness must work both ways: those who benefit from the voluntary and unremunerated contributions of data, information, and time from people should also provide data and information that they are not obliged to provide in a proactive manner. If not, then they need to start thinking about other ways of providing return on investment to participants.