Guest post: 23andMe’s “designer baby” patent: When corporate governance and open science collide

portrait6_cropped_2Barbara 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.

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9 Responses to “Guest post: 23andMe’s “designer baby” patent: When corporate governance and open science collide”

  • With all of the attention surrounding 23andMe’s patent, I think it might be useful to take a look at that patent. Does it actually cover 23andMe’s commercial product? It appears to cover the designer baby technology at the center of the ethical debate. Here is a link to a discussion of the patent with some links to the relevant documents:

  • Paranoia sells, the facts are irrelevant. This can’t be underestimated. It could go either way for genomics and it’s only going to get bigger as sequencing comes to the clinic. Interesting times ahead.

  • That’s a great summary of the conflict of interests within 23andme’s business model. Initial premise was to patent the markers for specific phenotypes and diseases but the question is- is this model still valid in the view of recent Supreme Court decision on Myriads patents. I have no idea how 23andme will assure financial returns to investors – it seems that after 7 years in business of loosing money the company is stressed out. In a rush to googlize genetics (read globalize and monopolize) the ethics is pushed aside.
    Actually the patent covers an extremely broad area of applications and does not provide any novelty, so it is just a red herring for VCs.

  • Of course this will happen. It’s unavoidable. And I am sure they will be sued when a child ends up with an un-predicted disease based on the immense amounts of toxin and environmental factors or something else.

    Genes are only a part of the picture. I prefer to take the stance that many scientists take toward 23 and Me.

    It’s almost laughable they can make those claims yet.

  • I think anytime patents and genetics and certain fundamental healthcare issues intersect, there is a potential conflict between the health choices of the individual and the financial gain of the private company.

    Is a drug patent legal? Yes. Is a patent for an AIDS drug that leads to a monopoly on that treatment that is out of reach of third world patients ethical. No.

    Is this 23andme patent legal? Maybe. Is it ethical? Maybe. (It is not a fair analogy of the 23andme patent to the AIDS drug, I admit).

    A good faith effort at the ethical choice is the best that can be hoped for, and perhaps we’ll all understand this better as it evolves.

  • Sigrid Sterckx

    Thank you very much for this excellent commentary! You rightly draw our attention to the fact that these questions have a relevance that goes beyond the field of genetics.

  • As a geneticist, 23andMe has been using some genetic results that we as geneticists are not even completely sure yet. Although some of its analyses might be true, it does overly simplified how to calculate risk factors for the public. The reason why this company is successful is that people are lacking basic understanding of genetics and the curiosity of people. It is fun to see how much Neanderthal genes you have, etc. However, it should be very cautious not to go too far such as designer baby patient. It is alarming to see that the public would rather believe a commercial company than more calculated science…

  • Designer Babies vs. The Designer Baby

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