I was very impressed by and much in agreement with Skúli Sigurdsson’s "Decoding Broken Promises" – not surprising, perhaps, since (full disclosure up front) we are friends and colleagues who have worked on the deCODE Genetics events together. I also commend Tiina Tasmuth for her similarly detailed and thorough account of The Estonian Gene Bank Project – an overt business plan. As a historian of the contemporary life sciences, I regard it as vital to think clearly about these very difficult matters and complex questions. This is why I take the opportunity to revisit their work for those of us living in places other than Estonia or Iceland. We can use these precedents as a valuable resource.
The fastidious and the relentless
The introduction to Skúli’s article describes it as “fastidious and unrelenting.” While I can attest that these are indeed two of Skúli’s best character traits, they should not be reduced to simple issues of personality. These are two qualities that are absolutely necessary for anyone writing, thinking, and/or acting on the questions of genes and ownership today – in Iceland, in Estonia, in the UK, the US, or anywhere else. Why should fastidiousness and relentlessness be so important in all our future engagements with genomics?
The quick answer is: because genomics – the science of it, the business of it, the sociality of it – is not just incredibly complicated; it’s irreducibly complex. Like so much else these days, genomics is an unruly amalgamation of the local and the global, the praiseworthy and the shameful, the promising and the troubling. Such deeply embedded contradictions are going to require thoughtful actions based on the most fastidious analyses of specific situations.
The deCODE Icelandic postmodern novel – Skúli has taught me to avoid the exoticisation of these events through the uncritical use of “sagas” and other Viking metaphors – can serve as a kind of barometer of the global pressure system made of genes, corporations, databases, nation states, technoscience, and people and their ills.
All of us, genomic citizens of the world, share a common ground made up of the following factors: speculative financial markets that reached a frenzied peak in the late 1990s; the increasing databasing of all manner of what might be called “population information,” since it elicits the group differences and samenesses that are of interest to pharmaceutical companies as well as state health agencies; the resulting privacy concerns that constitute an essential plank in the platforms of all liberal welfare states and supporting organisations; the rapid spread of genes and genetic technologies throughout medicine, criminal law, agriculture, newspaper coverage, television documentaries and entertainment alike; the growth of an equally ubiquitous bioethics enterprise, very often located in state-sanctioned and scientist-endorsed ethical bodies, but also found in a growing number of “watchdog”, “critical”, and “radical” non-governmental organisations (NGOs); a heady mixture of bewilderment, confusion, apathy, informed and uninformed enthusiasm, and informed and uninformed anxiety widespread among peoples of many nations.
This is why the deCODE events are of such interest and importance to all of us non-Icelanders. We are all in the same situation. We all have genes, we all get sick, we all harbour multiple kinds of information that are of multiple interests to multiple entities – first and foremost, perhaps, Capital with a big, global “C”. Yet at the same time, the events that Skúli has analysed and narrated are entirely specific to Iceland. The same can be said for Tiina Tasmuth’s account of the Estonian Genome Project.
For all their similarities, even these two cases present a host of differences, across the realms of science, politics, health infrastructure, culture, and economics. (Even within Iceland, one would do well to try to understand some of the differences in scientific and ethical practices that might distinguish the Iceland Genomics Corp from deCODE Genetics, instead of speaking about generic “genomics companies.”) This combination of generality and specificity is the doubleness that marks all phenomena of “globalisation,” demanding new analyses for each national situation – analyses that are just as fastidious, and born of the same relentless engagement with the issues.
The specific and the global
One difference between Iceland and Estonia may be found in the roles played by the respective medical associations in each country. The Icelandic Medical Association played a very active and critical role throughout the Health Sector Database controversy, and continues to be involved on all fronts. The medical association in Estonia, by contrast, seems to have remained, by and large, silent and marginalised.
But perhaps the most noteworthy difference is that Estonia has no community-based organisation equivalent to Mannvernd, the Association of Icelanders for Ethics in Science and Medicine. This coalescing of physicians, scientists, health workers, historians, philosophers, and others into a new non-governmental organisation in a nation which had virtually no history of any such NGOs is surely one of the brightest spots in the new Icelandic genomescape. However melancholy one might become about the Health Sector Database legislation that was enacted in December 1998, the fact is that the legislation and subsequent events were far better – thanks to the interventions of Mannvernd – than they would have been had the matter been left to the Icelandic government and deCODE. And Mannvernd has continued to provide campaign programmes and information that help to build a culture of critical scientific literacy on the issues of genomics and biomedical research.
Such relentlessness and fastidiousness are not easy to sustain, as anyone who has ever worked in one of these organisations will tell you. Finances and attention span are only two of the scarcities to be managed. But it will be absolutely necessary to build these kinds of organisations, which in turn will entail building new coalitions between scientists and citizens of all kinds. Nice sounding slogans like “No patents on life!” are not going to help in this process. Patents, databases, and the commercial genomics enterprises that coalesce around them are with us for the immediately foreseeable future. The questions to be acted on are the pragmatic, specific ones: what are the terms of ownership? What are the experimental and ethical protocols? How is the database to be structured and queried? What are the oversight mechanisms and procedures?
And finally, most importantly as well as most difficult: what are the means by which the participants in these efforts – the people who provide the informative flesh, without which nothing would be possible – will be given a collective voice in the future of the enterprise? Because one commonality that shapes genomics in Iceland, Estonia, the US, and the UK, is that individual participants remain individualised and isolated, even as their personal information is collectivised into a “population database.”
The best case scenario (which has yet to be taken up, as far as I can tell), is one in which you provide your informed consent, and provide it again for each new research project pursued by the database or biobank. Even in this formulation, each individual treads his or her own individual, solitary path. No one has even imagined a mechanism for ongoing, collective education; a mechanism for deliberation; a mechanism for decision making. The ethical machinery set up for achieving the very noble and necessary goals of informed consent and protection of privacy has the additional effect, in part through its grounding in the liberal ideal of autonomy, of reproducing the atomisation that benefits the status quo alone.
A genetic union?
In an era in which the collective power of labour is increasingly difficult to maintain, let alone enlarge, it may be wildly optimistic to try to imagine and build some new kind of genomic solidarity. But experimenting with the idea of genomic solidarity and working to imagine and invent its social practice seems increasingly necessary to me. One way or another, we are going to find ourselves grouped into some kind of population that has some kind of value, commercial or otherwise. That value comes from a collectivity that is greater than the sum of its parts – a database of thousands of records, or a biobank of thousands of tissue samples, derives its worth from the consolidation of what was once separate. So why should any of us become scientifically and commercially consolidated, but remain socially and politically isolated?
Perhaps the best opportunity for such an experiment in genomic solidarity may come not in Iceland, but in the UK, with its rich and lengthy history of labour activism and achievements. (Although let’s not forget the more sordid aspects of that history while we’re re-activating it.)
The UK Biobank, another unruly amalgamation of state agencies, private philanthropies, universities, and commercial entities, is now gearing up for a database of 500,000 genotypes-cum – phenotypes built from the blood and medical records of volunteer British subjects. From my distance, and being far from fastidious about it, they appear to have learned some things from the Iceland and Estonia cases, while perpetuating some of the mistakes.
The oxymoronic (and simply moronic) concept of “presumed consent” that Iceland installed in its database legislation has wisely been avoided. No single corporation will enjoy exclusive rights to the UK Biobank, as deCODE had demanded and received. But many issues nevertheless remain unresolved or questionable. How exactly the consent process will work is one such issue. Will it be “open consent,” a one-time procedure that releases your tissues and data for any study undertaken in the future? And in this kind of situation, what exactly does it mean to be “informed” about a future so open-ended and unpredictable that it defies, almost by definition, the concept of “information” in the first place?
So much remains to be worked out. In a recent report from one of their workshops, The UK Biobank Ethics Consultation Workshop April 2002, they admit that “the ethical and governance framework of the UK Biobank still requires considerable development.” That seems like an open invitation for some new NGO of scientists, physicians, and citizens to try some new experiments in building a movement of genomic solidarity, where collective value is recognized with the appropriate collective control. It is a perfect opportunity to develop new “ethical and governance frameworks” for the long haul ahead. But will anyone step forward?
