Academic journal article
By Wilson, Sarah
Trames , Vol. 8, No. 1-2
Genomics--Laws, Regulations and Rules
Human Genome--Discovery and Exploration
Genealogical Databases and Libraries--Laws, Regulations and Rules
Genealogical Databases and Libraries--Ethical Aspects
Genealogical Databases and Libraries--Social Aspects
The combination of developing genomics and information technology in the form of population biobanks has led to wide ranging discussions of the ethical, legal and social implications of this new resource. Whilst the potential offered by the databases has become one area of enquiry, the questions raised by the reality of the development and management of the databases is a continuing theme. Those questions relate not only to issues of internal ethics to do with the participants in the schemes, such as informed consent and confidentiality, but also to broader issues of social justice. The issues of social justice identified by, for example, the Human Genome Organisation, relate to areas of compensatory, procedural, and distributive justice, and include matters concerning the broad themes of balancing public and private interests, and the individual and the common good. These themes will be addressed here by looking at the specific issues of benefit sharing, ownership and access, in relation to three planned database projects, in Iceland, the UK, and Estonia. Whilst it is acknowledged that these projects are mainly still in the planning stages, there is sufficient information in the public domain to make a preliminary assessment of these areas. As Casado da Rocha (2002) has said in relation to the Icelandic database, "as a scientific and commercial project ... it exists both in legal texts and in social perceptions". In the Icelandic and Estonian projects, specific legislation relating to the governance of the databases has been enacted prior to the creation of the databases themselves, whereas in the UK there is no specific legislation relating to the UK Biobank. In the UK case, arrangements for the governance of the project has been the responsibility of the project founders and interacts with existing UK legislation and other regulatory frameworks, and an Ethics and Governance Framework document was published for comment in late 2003.
Considerations of the tensions between public and private interests and notions of individual and of common good have frequently formed the framework for discussion of genomics technology. For example, Palsson and Rabinow have categorised the discussion of human genome projects as comprising "an intense tug-of-war between communitarian and commercial perspectives on human genome projects". In this categorisation they link a communitarian approach with "common property arrangements and open access, the public domain" and commercial perspectives with "private property and the free market" (2001:166). Although this categorization does not hold for all aspects of the issues under consideration here, it is a useful framework within which to set the discussion, not least because notions of community and solidarity are increasingly being applied to discussions of human genomic databases. This 'community' response to research is defined by Louis (2003): "at the broadest level, both [researchers and research subjects] see their participation as institutionalized progress to benefit science as a public good, as well as to share the material benefits of scientific discovery in larger society". Furthermore, discussions of ownership and benefit sharing of the databases are frequently based on the 'common heritage' aspect of the human genome, and the apparent 'common pool' characteristics of medical records and samples that provide the raw material for the databases. This article examines the ways in which the three chosen databases deal with the identified issues of benefit sharing, ownership and access, and attempts to draw some conclusions from this examination.
2. Benefit sharing
The issue of benefit sharing appears to have developed initially in the field of plant genomics, particularly in response to concerns relating to the exploitation of indigenous resources, amid accusations of 'biopiracy'. This can be seen in terms of the framework of community vs. …