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Genetic Databases: Assessing the Benefits and the Impact on Human and Patient Rights – a WHO report

Laurie, G

European Journal of Health Law   11 (1) 87-92

March 2004

This article summarises the underlying rational and provisions of a report on genetic databases prepared for the European Partnership on Patients’ Rights and Citizens’ Empowerment, a network of the World Health Organisation Regional Office for Europe. The Working Group that prepared the report consisted of Fons Dekkers,1 Alastair Kent,2 Graeme Laurie (Convener),3 and Carmel Shalev.4 The report is available at: report.pdf.

The recommendations of the report are set against the existing international human rights framework, from which the following guiding values are extracted:
- The pursuit of human well-being
- The quality of human dignity, including the principle of non-discrimination
- The principle of respect for persons, including the imperatives of beneficence, non-maleficence, and respect for individual autonomy.

The report examines the ethical, social and legal issues that surround the creation and operation of databases containing human genetic material. It is important to note, however, that genetic influences rarely determine an individual’s health status, and they never determine what it means to be an individual. It is, therefore, imperative that we do not place too much emphasis on genetics in discussing the human condition. We are, each of us, more than the sum of our genetic component

Moreover, we cannot easily distinguish between genetic information and medical information more generally; it is important therefore also to set any analysis of genetic databases in the wider context of health databases. This is not to deny, however, that certain elements of certain forms of genetic information throw up particular problems. Monogenic disorders are a clear example because of the relatively high predictability of disease in relatives. In such circumstances, the argument can be put that the information belongs to the family and not simply to the individual who has been tested. If this is accepted, however, it raises the problem of how to resolve conflicts over use or non-use of the information.

The recognition of the familial, and at times communal, quality of many forms of genetic information led to the conclusion that rigid adherence to an individualistic, autonomy-driven perspective would not be appropriate for the tenor of the report. The role of the public interest came in for close scrutiny in tandem with the examination of individual rights. In most circumstances, therefore, a balance of legitimate interests was sought.