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American Society for Experimental Neurotherapeutics Abstracts
August 2001

Legal Issues: Patents and Public Access vs Private Protection

Arch Neurol. 2001;58(8):1314-1315. doi:

At a time when whole populations (eg, Iceland, Estonia, and Tonga) are envisaged as targets for gene banking and study, the issue of patents and, especially, their impact on accessible health care and products is coming to the fore. Participation of populations and subpopulations in the study of normal genetic variation (polymorphic diversity) as a prelude to functional genomics and pharmacogenomics presumes the establishment of large databases. Thus, eventually, genomic information together with clinical profiles will create powerful new tools for prevention strategies and for individualized medicine.

Three questions need to be answered before endorsement by governments, institutions, and institutional review boards of patients with regard not only to patents and their role and impact in these new strategies, but also to the protection of the interests of patients and research participants whose contributions through health information and DNA samples led to the development of such patents. The first question relates to the type of consent obtained, the second to the approaches to personal privacy, and the third to the emerging issues in the debate on the benefits and disadvantages of patenting in the health care sector. Perhaps a middle road can be found that establishes distinctions between "therapeutic" patents and other patents and proposes a more equitable solution to the sharing of benefits from such patents.