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Ethical genetics

>From HMS Beagle Letters to the Editor Oct. 30, 1998
<http://biomednet.com/hmsbeagle/41/people/letters.htm>:

Ethical genetics

                In the opinion article entitled Opportunity, Not
                Exploitation, the author, Kari Stefansson, president and
                chief executive of deCODE Genetics, paints an idyllic
                picture of a benign and fruitful collaboration between a
                genomics company and the population of Iceland.
                However, we wish to inform your readers about a
                bitter controversy that has arisen in Iceland over the
                plans of deCODE Genetics. 

                The origin of the dispute is a government bill,
                introduced at the initiative of deCODE, which would
                allow the Icelandic Ministry of Health to license a
                company to compile a database containing medical
                records of all Icelanders, together with genetic and
                genealogical information. The bill allows the licensee
                exclusive rights to the commercial exploitation of the
                data for 12 years. 

                The exact purpose of the database has never been made
                very clear. According to the company's recent
                "non-confidential corporate summary" and their Web
                site, the applications would include research into
                hereditary diseases, and thus enable deCODE's clients,
                who will be mainly drug companies, to develop and
                test new products. Insurance companies are also
                mentioned as possible clients. A number of secondary
                uses are envisaged, such as providing management
                information to the health service. 

                Needless to say, the only contender for the license is
                deCODE Genetics. Furthermore, the presentation of the
                bill to the public has been almost entirely in the hands
                of deCODE, which has acquired the trust of the public
                by painting a rosy picture of the benefits and belittling
                the bill's opponents. 

                Initial opposition to the bill was mainly among the
                medical and university community, but it is now
                spreading throughout the more informed sections of
                society. Over forty Icelandic bodies have sent the
                Icelandic government their opinion of the bill. These
                include the Medical Association, the Medical Faculty
                of the University, the Data Protection Commission, the
                Consumer Association, the Science Research Council,
                and many others. Almost all are highly critical of the
                bill's provisions, and many reject it completely. A
                number of non-Icelandic scientists and bodies have
                also written to the Icelandic government expressing
                concern. These include the Data Protection
                Commissioners of the EU and EES, Professor Henry
                Greely of Stanford University, and Professor
                Marie-Claire King of the University of Washington. 

                The main concerns are the following: 

                (1) Consent and ethical review - the bill only allows
                for people to opt out of the database, but does not to
                give any other form of consent. At the same time, there
                is to be no ethical or scientific review of the
                applications, commercial or scientific, that the licensee
                may undertake with the data. This is at odds with
                accepted practice regarding research on human
                subjects. 

                (2) Confidentiality and privacy - the bill designates the
                database as anonymous, but legal experts have pointed
                out that the database as described in the bill consists of
                personal information, which, though de-identified, will
                not be anonymous. An expert in computer security has
                reviewed the plans of deCODE and concluded that
                privacy is far from being adequate (see the report of
                Ross Anderson). This is at odds with Stefansson's
                pious claim in the article that the systems used by
                deCODE are "the best in the world for protecting
                privacy." 

                (3) Monopoly and scientific openness - if deCODE
                succeeds in putting together this database, they will
                control virtually all the information needed for medical
                or genetic research in Iceland. The bill stipulates that
                (Icelandic) scientists may be granted access to the data,
                provided they work for institutions that contribute data
                (this would exclude the University of Iceland) and also
                provided that their research plans do not interfere with
                the commercial objectives of the licensee. The
                commercial objectives of deCODE are known to be
                very wide. It is feared that scientists who do not wish
                to collaborate with deCODE will find it much harder to
                raise research funds. This was referred to in an
                editorial in the October issue of Nature Genetics as
                "collaborate or die." 

                We would be most grateful if you could bring this
                matter to the attention of your readers. 

                On behalf of Mannvernd - Association of Icelanders for
                Ethical Genetics and Science,

                - Laufey Tryggvadottir, secretary of Mannvernd
                October 28, 1998

                HMS Beagle was aware that the company's work is
                controversial. We appreciate the opportunity to
                present the other side of the issue.