Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview

Prologue

The 3rd International DNA Sampling Conference brought together 225 participants to engage in a critical discussion of the socioethical and legal issues surrounding DNA sampling in communities and populations. To date, both the ethics of medical research generally and of genetic research in particular have concentrated largely on the individual. While increasing respect was given to individual autonomy and privacy, little consideration was given to families, to say nothing of communities and populations. Indeed, at a time then when there is increased interest in acquiring information on genetic risk, on gene-gene, or, gene-environment interactions and on normal genetic variation, it is important to begin an international discussion on the specificity – if any – of the socio-ethical and legal issues surrounding DNA sampling in communities and populations. The conference provided a forum to examine the following themes in open debate: biobanking and databases, the issues germane to communities and populations, the potential for commercialization, for patents and benefit-sharing, and finally, the specter of discrimination.

The first section of this multidisciplinary book acquaints the reader with the experience of current research projects in biobanks and population genetics, whether studies of genetic variation, or, of communities or whole populations. It examines the important issues of public consultation and participation as well as the various approaches to consent for the collection, conservation and sharing of genetic material and information in research.

It also covers the issue of biobanks, databanks, of the current rules governing ownership, of access, of actual and future uses and of the duties of those maintaining them. Again, whether databases are national, privately owned, or, a public research tool, determines what rules currently apply. But what rules should apply? Do the rules governing the privacy of personal data apply even if the data is anonymised or pooled? The contribution of whole populations to say nothing of that of the intellectual know-how and added value of research from around the word make “personal” data protection rules or even those of copyright difficult to apply. Where databases form the basis of a

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