Ethical Aspects of Human Genetic Databases: Distinctions on the Nature, Provision, and Ownership of Genetic Information

Article excerpt

1. Background

This article is primarily focused on the Icelandic Health Sector Database (HSD), an issue that has become a sort of paradigm for many discussions about the ethical aspects of human genetic databases in the "first" world. Its aim is to outline two ways of distributing entitlements to genetic information, to apply both models to the proposed HSD, and to extract some critical comments about the way events may develop. It will only provide an introductory overview of the ethical aspects involved, not a fully normative proposal.

The HSD project has been widely discussed in the bioethics literature, and may even provide a useful model for any ensuing discussion about the confidentiality of genetic information (Moreno 2002), but there are not many comprehensive ethical theories able to tackle this kind of issues. Perhaps the most important is the one published in From Chance to Choice: Genetics and Justice by Buchanan, Brock, Daniels & Wikler (2000). These authors provide a coherent argument to support two claims. First, that we should use genomic science to cure disabilities in respect to some basic human functions, but not necessarily to improve human abilities beyond that threshold. Second, that society should increase its respect to those with a disability, but that this should not prevent us from treating serious genetic disorders. This is what many people believe as a matter of course, but the contribution of Buchanan et al. is important because they systematically explore those two themes within a liberal theory of justice; that is why the book is specially valuable for any discussion of genetics and justice in liberal societies (such as Iceland is in many respects), even if it is more focused on genetic intervention or engineering than on genetic research using databases and other bio informatics tools. Buchanan et al. also claim to have something to say about attitudes toward genetically based disabilities that members of a society must exhibit if our new tools are to be used justly (2000:15), but they do not provide a full account of those virtues necessary to prevent the exclusion of people with disabilities. I would like to emphasise the need of such a supplementary approach, centred on the virtues most appropriate for those responsible and participating in genomic research. But first a few basic distinctions are necessary.

1.1. The question

The management of genetic data, the distribution of knowledge and the flow of information are all issues "important" to deCODE genetics, the company licensed to operate the Icelandic HSD. According to one of its press releases, deCODE defines itself a company using population genomics to "create a new paradigm for healthcare [...] turning research on the genetic causes of common diseases into a growing range of products and services" (2002). However, the company believes that, in order to achieve its mission, "this often requires that an intellectual property be secured, which may delay publication of a discovery." For Kari Stefansson, CEO of deCODE, the choice between early publication and the development of a commercial product for the benefit of patients is "an easy one" (Gulcher and Stefansson 2000). However, the question is not that easy. How can "intellectual property be secured" in human population-based databases containing medical and genetic information?

1.2. Some definitions

Although the HSD has not been fully implemented in Iceland yet, as a scientific and commercial project it already exists both in legal texts and in social perceptions. Turning to the former, the Council of Europe defines genetic data as "all data, of whatever type, concerning the hereditary characteristics of an individual or concerning the pattern of inheritance of such characteristics within a related group of individuals." This definition, which is roughly the same as the one in Icelandic law, includes genetic information obtained both from analysis of the individuals DNA and in other ways (Hartlev 2000:76). …