Yin-Yang Genetics, or the  HSD deCODE Controversy

 

Skúli Sigurdsson

Kirkjubraut 3, IS-170 Seltjarnarnesi,

Iceland, sksi@hi.is

 

 

To appear in New Genetics and Society 20:2 (August 2001), 103-117.

Presented here with the permission of the author.

 

 

 

 

Abstract: Iceland has attracted world-wide attention because of a controversy surrounding the Icelandic Health Sector Database Act of 1998 and the genomics company deCODE Genetics. The controversy concerns limits to state power, bioethics and regulation of research, and civil liberties. Understanding it necessitates paying attention to the yin-yang-like character of deCODE; is it international or Icelandic, what is the relation between the HSD and deCODE, will the HSD engulf the Icelandic nation as a whole?

 

 

 

 

 

The ongoing controversy about the Icelandic Health Sector Database Act[1] and deCODE Genetics[2] brings home the elusive nature of closure in political controversies dealing with technoscientific developments and the fruitfulness of studying controversies (Mendelsohn, 1987; also McMullin, 1987, 82-88; Shapin and Schaffer, [1985] 1989). It started just before Easter 1998 although the founding of deCODE Genetics in late 1996 (registered in Delaware, USA with an Icelandic subsidiary, Íslensk erfdagreining) could be viewed as pushing the starting point a bit earlier. Nine months later it reached a momentary standstill with the passing of the HSD Act by the Icelandic parliament in December 1998, but there is no end in sight. The controversy has begun to assume a benchmark status in analyzing the complicated and thorny issues attending the establishment of large-scale biomedical databases (Kaye & Martin, 2000).

The population of Iceland was 272,000 on the eve of the controversy whereas in December 2000 it had become 283,000.[3] This demographic-temporal measure can also serve as a reminder of the special character of Icelandic society, i.e. its small size, and the risk of trying to generalize from the Icelandic episode to larger societies or vice versa. What does a public debate signify in such a minuscule society and can it be compared to debates in societies much larger?

The small Icelandic society is predominantly located in towns and villages on the rim of an island 103,000 square km (40,000 square miles) in size (more than half in Reykjavík and its environs). These facts coupled with a fair degree of social homogeneity and high-quality healthcare bring distinctive advantages for conducting research in human genetics. Research subjects are easy to locate, are not separated by vast distances from researchers and research institutions, and have, moreover, hitherto been very willing to participate in the modest amount of biomedical research done to date in Iceland. But social homogeneity does not entail cultural transparency, and the opaqueness has been increased by the continual invocation of myths, cliches, fantastical tales about Iceland, past and present, pieties, and regurgitated half-truths which have permeated the HSD deCODE controversy to date.

It is difficult for the cultural critic, historian, reporter, or social scientist to come to terms with the dynamics of any controversy and the multifarious character of the HSD deCODE story heightens the challenge. The analysis demands knowledge of Icelandic and foreign languages, esp. English, Icelandic history, Icelandic politics and parliamentary procedures, the way Icelandic media function, how Iceland is presented internationally and how those accounts travel back home, developments in biotechnology, intricacies of the U.S. stock market and its regulatory environment, genetics, law, history of medicine, science and technology, the metaphorical power of language, the art of story-telling, the world wide web etc., etc. The analyst and critic must be able to perform multiple Gestalt switches and be aware of how the veracity of each perspective needs yin-yang-like to be seen as a contender for truth or falsehood depending on the situation at hand. A solid analysis will be very time consuming given the speed at which events have taken place with the completion of the Human Genome Project looming in the background until 2000 (Fortun, 1998), the relentless spin-doctoring by representatives of deCODE, and attempts by the government bureaucracy to downplay the controversy in its initial phases.

An abundance of time and patience have become prerequisites for a satisfactory analysis or coverage of the HSD deCODE controversy which is highlighted by the fact that some of the best reporting on it has been done by foreign journalists[4] and documentary film makers[5] who, although handicapped by not knowing Icelandic, have had much more time at their disposal for preparation and work than their Icelandic counterparts. Similarly, the interest shown in the controversy internationally by activists, concerned citizens, bioethicists, social scientists, and college and university students has been an invaluable source of motivation and strength for HSD deCODE critics in Iceland. The carefulness by which these "strangers" have struggled with comprehending the details of this genomic database controversy near the arctic top of the world has been electrifying. Curiosity, compassion and seriousness still seems viable despite the cynicism of globalization and the attitude of many Icelanders. The Icelanders may have become tired of the debate which after nearly three years has assumed somewhat of an esoteric character. They have equated the HSD project with dollars, or they have regarded the controversy as a vehicle for quick acquisition of symbolic capital (Jónatansson, 2000; Pálsson & Rabinow, 1999).

 

Background

The objectives of the HSD legislation are defined in article one of the HSD Act: "The objective of this legislation is to authorise the creation and operation of a centralised database of non-personally identifiable health data with the aim of increasing knowledge in order to improve health and health services." The issues which caused most controversy (Zoëga & Andersen, 2000), some of which are adumbrated in this definition, were

 

the establishment of a database with sensitive health information without informed consent of patients (thus encroaching upon patient autonomy and the doctor-patient relationship),

 

the attempts to legitimize presumed consent by claiming that data in the database could be rendered non-identifiable by cryptological means thus making the database classifiable as an epidemiological entity (moreover, offering a false sense of secure data protection and trying to thwart public discussion with a heavy dosage of computer-science arcana),

 

the fact that the true objective of the Act was to serve the interest of a single company -- deCODE Genetics -- which would gain monopoly powers and hamper free scientific research,

 

the manner by which an attempt was made to steam-roller the HSD Bill through the Icelandic parliament at the end of the spring session of 1998 without proper discussion and consultation with the Icelandic Medical Association and the Icelandic scientific community (Eyfjörd et al., 1998),

 

that future potential customers of the licensee were unknown but included insurance companies, and that this purchase of HSD data was hard to reconcile with the otherwise sanctimonious goals of the Bill.

 

The presentation of the HSD Bill at the end of March 1998 was followed by a barrage of publicity by deCODE Genetics highlighting the virtue of the HSD for promoting health worldwide, the continued source of foreign capital which the HSD would generate, the number of jobs the HSD would offer in addition to the 170+ persons already employed by deCODE and hence the ability to reverse the problem of brain drain, and promises of economic and medical progress. The publicity skillfully linked health and genetics, and the aims of the HSD with research in human genetics done by the company since 1996, e.g., on familial essential tremor and multiple sclerosis. This clever blurring of goals was facilitated by a large agreement for research on twelve diseases with the Swiss pharmaceutical giant Hoffmann-La Roche in February 1998 (Gibbs, 1998). The deCODE-Roche agreement was signed by Dr. Kári Stefánsson, CEO of deCODE Genetics, and Dr. Jonathan Knowles on behalf of Roche with Mr. Davíd Oddsson, Prime Minister of Iceland, sitting between the two (Jóhannesson, 1999, 182-193). The symbolic presence of Mr. Oddsson signalled the high hopes which deCODE and Kári Stefánsson had raised in government circles, the future economic value ascribed to the HSD and the tenacity by which the government was likely to support deCODE's future plans.

This was a volatile mixture of messy ethical questions, lofty medical and economical promises, and politics, in a society which possessed neither a vocabulary nor tradition to discuss biotechnology, bioinformatics or the regulation of biomedical research, and certainly had no international models with which to discuss novel genomic database issues. In addition, the utterly unprepared Icelandic media and the vague and slippery nature of many issues at heart of the HSD proposal and its hybrid nontransparent character meant that the debate became acrimonious, polarized, rambling and pitted laymen against experts. It was driven by the interests of deCODE and the logistics of parliamentary procedures. It became intensified in the fall of 1998 as more opponents added their public criticisms of the HSD project and deCODE to that of the Icelandic Medical Association. The growing discontent and fears resulted partly in the establishment in October 1998 of Mannvernd, the Association of Icelanders for Ethics in Science and Medicine.[6] Unfortunately, despite honest attempts by the opposition and clear-sighted members of parliament the debate did not yield clarity or signify the beginning of a difficult dialogue concerning the issues at hand and what establishing novel forms of biotechnology in Iceland might entail.

The effects of the 1998 debate can still be felt in Iceland, and what I would christen the yin-yang character of deCODE Genetics was a major reason why the debate became so heated and the aftertaste so bad.[7] Did the HSD signify science or business, was deCODE an Icelandic corporation, did the deCODE-Roche deal bear on the HSD project, what was the relationship between the HSD and deCODE's research, did the HSD encompass genetic possibilities thus constituting a nation-wide genetic database project? The hybrid and complicated character of deCODE, the HSD, and deCODE and HSD combined meant that it was nearly impossible to gain a clear view of the situation. Instead of acknowledging the inherent complexities of the matter the debate soon became starkly polarized. The resulting black-and-white scenario meant that people spoke endlessly at cross purposes which, I would argue, was exactly what the promoters of the HSD project wanted. They did not want a focused debate and would have been delighted had the HSD Bill simply been approved swiftly and quietly in the spring of 1998. The HSD promoters shied away from thoughtful reflections and sought sophomoric black-and-white sound bites, with which the critics could be silenced, or a least made to appear suspect. Prime Minister Davíd Oddsson, e.g., remarked in August 1998 that privacy standards were so lax in Icelandic health institutions that it was hypocritical of the Icelandic Medical Association to oppose the HSD Bill on the grounds that it threatened the doctor-patient relationship.[8]

The smallness of the Icelandic media makes it is difficult to reach high professional standards which partly require scale and a high division of labor. This problem is exacerbated by the tight relationship between the government and Morgunbladid, the largest newspaper. No Icelandic news-medium employs a science or technology reporter, which has had disastrous results in the HSD deCODE controversy, given the complex technical issues at hand and the truisms and banalities which have frequently been offered, not the least by Kári Stefánsson, as substitutes for detached analysis. Thus a few days after the surprise introduction of the HSD Bill he was quoted in the daily press offering a simplistic vision of the relationship between disease and genetics: "All diseases I know in our society are either absolutely genetic or have genetic components."[9] The example of the media highlights a much larger structural problem in Iceland, namely how difficult it may be for Icelandic society to build on the limited expertise that it has toward acquiring the requisite range of analytical skills demanded in a global genomic economy.

Thus it is a particularly unpalatable legacy of the HSD deCODE debate of 1998 how the opinions of experts, critical of the undertaking, were ignored by deCODE, the government parliamentary majority (made up of the conservative Independence Party and the central Progressive Party)[10], the parliamentary committee on health and social insurance, and the government bureaucracy. The negative precedent set for decision-making in the emerging realm of global genomic biopolitics became apparent in the passing of the Biobanks Act in May 2000, in which the idea that it be acceptable in Iceland to let presumed consent pass for informed consent in biomedical research was further entrenched. The Biobanks Act was passed without a whiff of public discussion, with a lackluster discussion in the Icelandic parliament and it has attracted very little international attention (an exception is Winickoff, 2000, 2001).

 

Comparisons

The small size of the Icelandic population, despite the attractiveness of its social homogeneity, may entail limitations for studying the potential involvement of genes in certain diseases, a project which demands a large population size. Furthermore, the advantage of genetic homogeneity so much trumpeted by deCODE as characterizing the Icelandic population and making it a unique corporate asset, has increasingly been questioned (Abbott, 2000; Árnason et al., 2000; yet Gulcher et al., 2000). The waning genetic fortunes of Iceland have become increasingly noticeable internationally as plans to construct a comprehensive genetic database in Estonia (population 1.4 million) using informed consent have gained momentum (Albrecht & Krumm, 2000; Frank, 1999; Frank, 2000b). After the passing of a bill by the Estonian parliament in December 2000 -- the so-called Human Gene Research Act -- authorizing the construction of such a database an editor of the German newspaper Frankfurter Allgemeine Zeitung spoke of the coming revolution, with Iceland and Estonia leading the way to new biopolitics. The editor Frank Schirrmacher writes:

 

The socio-biologist Edward Wilson has asked what society would be like if every living person -- because they are born -- were the result of a genetic decision by parents, the state or a doctor. A look at Iceland, and at Estonia, that once forgotten country on the Baltic Sea, shows that this is not an academic question. A few days ago, with an overwhelming majority, the Estonian parliament approved the establishment of a genetic database. It will now go before the president. It will be published in the official bulletin before Christmas. (Schirrmacher, 2000; also Schirrmacher, 2001)

 

Schirrmacher then goes on to discuss how a process will be set in motion whereby eventually nearly 1 million Estonians will have deposited their genotypes into the database. Moreover, he observes that "With this scientific and socio-political experiment, Estonia, along with Iceland, finds itself at the cutting edge of the new biopolitics." (Schirrmacher, 2000) It is difficult to know what to make of such a comparison between Iceland and Estonia though one wonders whether the quasi-exoticness of countries on the outer edges of Europe may not dim the critical faculties of journalists and commentators in the center of Europe, tempting them to eliminate everything specific in each story, and in each country's history and culture, and to throw the rest into one huge pot in order to indulge in inflated scientific fantasies.

Schirrmacher's celebration of Edward O. Wilson and sociobiology in the Estonian case has its odd correlate in the HSD deCODE controversy. An op-ed piece by the distinguished geneticist Richard C. Lewontin appeared in The New York Times at the end of January 1999, critical of the recent HSD legislation and the exaggerated promises of biotechnology (Lewontin, 1999). Kári Stefánsson responded by denouncing Lewontin in a widely circulated Icelandic newspaper claiming he was a well-known extremist and turned truth upside down by claiming. "Lewontin is known for his extreme views and he fought molecular biology in the past and thought it was dangerous."[11] Yet, paying close attention to the difference of the genomic database debate in each country as well as to each country's vastly different trajectory through World War II, the Cold War and the 1990s may be more fruitful than trying to discern similarities.

Vigorous opposition and protracted controversy characterizes the Icelandic debate whereas there has been very little opposition and critical discussion in Estonia (Frank, 2000b; Kangilaski, 2001). What is the value of public debate for sustainable developments in biotechnology? What is the meaning of genetics in Estonia, formerly part of the Soviet Union, in light of the legacy of the Lysenko affair in Soviet history? What does privacy signify in a population that was once spied upon by the KGB? What is the meaning of genetics in Iceland, a nation for whom the Cold War was economically the "best" of all possible wars and whose efforts in human genetics in the 1960s and 1970s were funded by the U.S. Atomic Energy Commission (later Department of Energy) (Sigurdsson, 1999; also Sigurdsson, 2000)? What is the meaning of genetics in Iceland when its eugenic past has hardly left a dent in public memory?

This failure of memory in Iceland was demonstrated poignantly by newspaper discussion in 1999 about illegal eugenic sterilizations in the early 1970s (Karlsdóttir, 1999),[12] which the public and media did not in any way connect to the HSD deCODE controversy and the wider politics of genetics. Furthermore, what is either intriguing or exasperating depending on one's proclivities is the frequent blurring of specifics in the Icelandic case when it and foreign developments, such as the Estonian case or that of the Polynesian island kingdom of Tonga, are compared. For example, in recent coverage of developments in Estonia in wake of its genetic-database act it is the danger of blackmail with personal information which is discussed (Kangilaski, 2001), not the meaning of privacy for the social fabric which has dominated the Icelandic controversy. One wonders what that says about the legacy of KGB and the Soviet system enshrined in the collective memory.

If the Icelandic HSD may eventually become a major pillar in a nation-wide database with powerful genetic possibilities, it will be the result of a long-winded process. Hence, in recent reports on developments in Estonia it is misleading to obliterate the sense of process: "Unlike their counterparts in Iceland, Estonian donors have a right to their genetic data." (Kangilaski, 2001) This comparison is somewhat misleading as the genetic data collected by deCODE until now result from studies of specific diseases, not from donations made explicitly to a national database. The operators of the database in Estonia will have responsibility towards their subjects which will not be the case in the proposed HSD in Iceland under the disguise of anonymity. Furthermore, the extent to which the DNA samples can be utilized for studies of "closely related" diseases by deCODE is a delicate issue. A major reason leading to the ousting of the National Bioethics Committee at the end of July 1999 was that the committee was on the verge of making deCODE and its collaborating physicians radically revise their consent forms so as to make them actually properly informed (Abbott, 1999).[13] Likewise, it is misleading to describe developments by Estonians as "They follow the trail blazed by Iceland, where for several years the gene pool of 275,000 Icelanders has been the fishing preserve of Reykjavik-based deCODE Genetics which is hunting for gene variants …" (Hollon, 2001)

 

Idealizations

If globally applicable lessons are to be drawn from the Icelandic experience it will be necessary to pay painstaking attention to the ethnographic and historical details of a specific culture in a specific time and place, and with a particular historical trajectory. In the Icelandic case it entails that the language barrier must be recognized as an integral part of the dynamics of the controversy, and how local promoters and defenders of the HSD Act have tried to use the language shield and invoked democracy to present sanitized versions internationally of what occurred during the 1998 debate. The HSD Act was criticized in 1999 by the founders of another new biotechnology company in Iceland, Urdur-Verdandi-Skuld (Iceland Genomics Corporation)[14] (Palsson & Thorgeirsson, 1999; also Enserink, 2000). Jeff Gulcher and Kári Stefánsson of deCODE Genetics responded, said that after deCODE Genetics suggested the HSD idea to the Ministry of Health and Social Insurance in 1997 it was subsequently placed on the homepage of the Ministry for comments in 1998 and noted: "This was followed by a vigorous debate that included 700 articles in the three Icelandic newspapers, numerous radio and television programs, and town meetings all across the country. The database bill was debated more than any other bill in the history of the republic." They also said that despite recognizable difficulties that: "We believe the way in which Icelanders handled the database idea provides a reasonable definition of the concept of community consent." (Gulcher & Stefánsson, 1999)

To date there exists no comparative historical analysis of the intensity of the debate to back up this claim, one would like to know how many of the articles were pro and con, it is unclear how many citizens actually made use of the Ministry homepage, and to speak of community consent seems quite farfetched. Moreover, the Gulcher and Stefánsson account blends out the crucial interplay between Icelandic and foreign media reports which yin-yang-like defies enumeration and easy classification as is well illustrated by the uproar in Iceland caused by a critical article in the German weekly Der Spiegel entitled "Peep Show in the Land of the Vikings" in the summer of 1998 (Evers, 1998). The article hurt nationalistic pride and spawned numerous articles in the Icelandic press, but is the original article included in the Gulcher and Stefánsson statistics? What is most unhelpful by simply speaking about a debate and invoking the authority of raw numbers is that thus the situation of 1998 is ignored, an atmosphere which might be described as a mixture of a shouting match, elaborate advertising campaign by deCODE (not merely innocuous town meetings), overwhelming media attention and marathon sessions in the Icelandic parliament. Although the intensity of events in 1998 is remarkable and still continues to fuel the HSD deCODE controversy, it is important not to idealize the 1998 debate in Iceland when analyzing proposals for large-scale biomedical databases elsewhere (e.g., Kaye & Martin, 2000).

The most extreme version of such romantic idealization has been presented by the U.S. anthropologist Paul Rabinow. He participated in a talk show in March 1999 on the U.S. National Public Radio, which discussed the history of biotechnology and how it had changed society. Sarah, a listener in Watertown, Mass., called in and asked if any of the three guests on the NPR talk show would comment on the deCODE Genetics controversy in Iceland. Rabinow was willing to do so and began by saying:

 

Well, I'm about to study this, and I've begun working with some of the people in deCODE, in part, because they've made an alliance with Roche Molecular Systems, which is the Company which I studied when I wrote my book about PCR. And I know something about this now. I think it's important to clear up a few things. First, what's interesting about the deCODE situation, to me, is that it's the most fully informed-consent populationwide whole-nation debate about biotechnology that's ever taken place. This is an entirely literate homogeneous population which had nine months of democratic debate and 700 newspaper articles, 150 television programs, endless debate, and they voted and they decided to go ahead with this project. That doesn't mean they're right or wrong, but it does mean that we get an example here of what a democratic process looks like.[15]

 

          The democracy card had been played a little earlier by the Icelandic anthropologist Gísli Pálsson, and Rabinow's investigative collaborator, who was reported saying in The New York Times in February 1999 that Icelanders resented the meddling of foreigners who thought they knew what was good for Iceland, the world's oldest democracy. Here he was presumably referring to what Lewontin[16] had noted correctly the previous month about the HSD legislation, that the Icelandic public had been poorly informed about the issues at hand and the parliamentary procedures had resembled those of Third World nations. Gísli Pálsson noted that people thought they could adopt views from afar about places culturally very different from their own. Furthermore he said: "But there was a fierce debate for months, with public participation, and one has to conclude that it has been an informed and lengthy discussion, a democratic process." (Lyall, 1999, 1)

An exceedingly clear formulation of the argument about a democratic process legitimizing the HSD project and bestowing on it the blessing of the community (erasing from public memory tawdry parliamentary politics) was provided by Kári Stefánsson in January 1999. He said he was satisfied by the parliamentary decision which was the result of an intense debate and that no other scientific project had been discussed as thoroughly. "We have basically set a standard of decision-making. As a result, 75 percent of our people support it." He continued by saying: "The critics are a minority. And if they persist, they not only criticize the [HSD] project, but the functioning of democracy itself."[17] Kári Stefánsson's attempt to employ political rhetoric to marginalize the critics has not worked and has probably only backfired for him and deCODE Genetics. The contempt which Kári Stefánsson invariably has shown for critics, e.g., Mannvernd, has enhanced the difficulty having any kind of dialogue about complex scientific, legal, ethical and technological issues with Kári Stefánsson.[18] This difficulty is summed up in a rhetorical move on his behalf, namely to appropriate democracy and the threatening existence of organized opposition as a formal argument in favor of the HSD Act and effectively avoiding to engage with his critics about substantitive issues.

An important reason why attempts to silence the Icelandic critics with the democracy argument has failed is that they remember all too clearly the extraordinary course of events in the parliamentary debates in the fall of 1998. Besides recalling that expert opinions critical of the HSD Bill were ignored by the government majority in the parliamentary committee on health and social insurance, they can probably never forget how between the second and third reading of the HSD Bill essential changes were made to it. The government majority on the committee overruled a request by the government opposition on the committee and did not allow expert witnesses to be called for the committee in order to assess the implications of these changes. This resulted in an exceedingly harshly worded opinion by the minority on the committee in which it said that there was hardly an example in the whole history of the Icelandic parliament that a single company had been able so blatantly to have favorable changes made to a bill during the final round of discussion. Moreover, this constituted a blatant violation of Icelandic parliamentary traditions.[19]

          Instead of speaking of setting a standard of decision-making it seems more appropriate to describe the course of events in Iceland in 1998 as very effective lobbying by deCODE Genetics and a legislation made possible by a strong parliamentary majority and party discipline. A draft bill which had been faxed by deCODE to the Minstry of Health and Social Insurance at the beginning of September 1997 (Jóhannesson, 1999, 172). Hence, it seems utterly misleading to describe what happened with concepts like democracy, or standards of reaching decisions. Yet, Paul Rabinow did so on Icelandic State Television in the middle of July 1999. He was asked what he thought about the HSD debate. In his answer with the logo of deCODE in the background he concluded by saying: "So, I think that what I am saying in two words is that the process has been democratic and passionate. I think it is time to move on to the next set of debates, both in Iceland and outside Iceland to make sure that this is done well so other countries can follow a model of what Iceland has done." The emphasis on how democratic events in 1998 had been in Iceland was repeated by Gísli Pálsson and Paul Rabinow and they said concerning the passing of the HSD Bill: "This decision was clearly the product of informed democratic consent, whatever one may think of the substance of the bill." They then noted that some of the opponents had questioned democratic procedures. "Such a critique of democracy would, of course, necessitate accepting a subject position of technocratic authority or humanitarian universalism that are themselves the topics of lively critique." (Pálsson & Rabinow, 1999, 17)[20]

It is difficult to comprehend why these two anthropologists interpret the course of events in Iceland in 1998 in this manner and invoking fancy terms seems a poor substitute, e.g., for reading in the records of the Icelandic parliament and taking as a starting point the aforementioned opinion of the minority on the committee on health and social insurance. For an analyst like myself, and a professional historian of science, it is quite disturbing that other practitioners of science studies adopt uncritically the position of one side to a debate without openly acknowledging that, do not do their homework, and most importantly do not engage with the most basic critical questions of social theory. That would include paying attention to the heterogeneity of the actors involved, power relations, economic and political interests, and cultural patterns, in their complex relation to the particular structures of the public sphere.

 

Discontent

One of the odd and remarkable paradoxes of the HSD deCODE controversy is that still in early 2001 there exists no HSD, not a single medical record has found its way into the database for the construction and operation of which deCODE received a license in January 2000. But the Office of the Director General of Public Health in Reykjavík, Icelands, administers a database of those who have chosen to make use of the opt-out clause in the HSD Act and expressed their dissatisfaction with the doctrine of presumed consent which is enshrined in the HSD Act.[21] In the middle of March 2001 19,697 citizens had opted out of the HSD and in the process become entities in a second-order HSD registering those socially deviant whereas the first order HSD is still empty.

According to the HSD Act (article eighteen) Icelandic citizens had six months after the passing of the law to unconditionally opt out of the HSD, for it was only after this grace period that entry of health data into the HSD could commence. Bids for the license of the HSD were opened in April 1999 (there were two bids and that of deCODE was accepted in early May 1999) (Jóhannesson, 1999, 234). If the HSD deCODE debate in 1998 had been an example of a "fully informed-consent populationwide whole-nation debate" like Rabinow had asserted on U.S. National Public Radio then in May and June 1999 the Icelandic citizenry could have concluded that the grace period would be considerably longer as the bidding process was just over and no license had even been given to deCODE. Yet, the graph depicting opt outs from the HSD shows an exponential growth which then levels off in late June 1999 (i.e. six months after the HSD Bill was passed) and continuing to grow since then.[22]

Of the many entangled reasons which led Icelanders to opt out of the HSD in the spring of 1999 was undoubtedly the unclarity about the future potential customers of deCODE, the HSD licensee. They included HMOs and insurance companies (Andersen, 1998).[23] The specter of insurance companies caused considerable controversy in Iceland. Hence, it is striking that among the potential customers of the HSD which deCODE listed in the voluminous registration material which it filed in March 2000 with the U.S. Securities and Exchange Commission prior to its Initial Public Offering on NASDAQ in July 2000 insurance companies are no longer mentioned (also Fortun, 2001). The SEC registration material showed that at the time of filing the largest share holder in deCODE was Hoffmann-La Roche which owned 13 %, a fact that added yet another dimension to the already complex yin-yang character of deCODE (Davídsdóttir, 2000). That makes implausible the claims by Hoffmann-La Roche that it had no interest in the HSD project (Schlumpf, 1999, 15).

Mike Fortun has drawn attention to the 200kb fragment of DNA of potential value for the investigation of multiple sclerosis and which forms the basis for an agreement between Beth Israel Deaconess Medical Center and Kári Stefánsson (Fortun, 2001). Patients groups have not played a large role in the HSD deCODE controversy. However, the plight of the multiple sclerosis patients and the hopes which the research by deCODE in the field of human genetics seemed to offer them was often cited indirectly as an argument in favor of the HSD in 1998. The goodwill of multiple sclerosis patients with whom Kári Stefánsson had worked in the past as a physician and researcher was employed in the advertising campaign which deCODE ran in the fall of 1998 and which has been euphemistically referred to as town meetings (Wagenmann, 1999b, 45). Some two years later deCODE's research on multiple sclerosis seems not to have progressed much further and is not even listed among deCODE's achievements in press releases by the company and Roche Diagnostics (Fuhrmans, 2001).

The role of patients and ordinary human subjects in the HSD deCODE controversy needs to be constantly reiterated. What were they promised and what have they gained? In the case of multiple sclerosis patients the gain is none or negatively poignant as illustrated by the situation of a patient who participated in research on multiple sclerosis with Kári Stefánsson and the Icelandic physician John Benedikz in the mid-1990s. Although she signed informed consent forms she has still to be returned her data after she chose to terminate her participation in the study, a study central to construction of the image of deCODE in 1996-1998 (MacPherson, 2000, 31). Paying close attention to the lives of patients and citizens and giving voice to their plight is essential and may have the added benefit of ensuring that the analysis of events remains compassionate and in touch with reality.

 

Acknowledgments

 

I thank for their encouragement, helpful discussions and assistance Michael Becker, Bogi Andersen, Sarah Brownsberger, Einar Árnason, Wolfgang Edelstein, Mike Fortun, Lone Frank, Heimir Thorleifsson, Kristín Kjartansdóttir, Robert J. Magnus, Everett Mendelsohn, Jackie Nash, Pétur Hauksson, Rögnvaldur G. Möller, Hilary Rose, Elvira Scheich, Silvan S. Schweber, Mona Singer, and Michael Tringe. I thank Peter Glasner and Harry Rothman, editors of New Genetics and Society, for having invited me to present an earlier version of this paper entitled "Anxiety, Bloodletting and $-Euphoria in Cyberspace: The HSD deCODE Controversy in Iceland" at the 4S/EASST Conference "Worlds in Transition" in Vienna September 27-30, 2000. The author is a member of Mannvernd, the Association of Icelanders for Ethics in Science and Medicine.

 

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