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The use of information technology within the health care sector has spurred rapid growth in the development of health-related databases. Genomics, bioinformatics, and high throughput technologies for genetic testing are further adding to this growth. In order to address privacy issues and the vulnerabilities of digital human genetic information, governments need to consider the adequacy of existing policies, practices and procedures.
In most OECD countries, the protection of individuals' genetic information relies on a combination of health-related, confidentiality, and/or personal data protection laws. Many countries also provide constitutional protection or human rights legislation. In general, however, no specific laws distinguish the processing of genetic data from other personal or sensitive information. Yet genetic data is perceived as being "special" because it can reveal important information about both an individual and his/her family, and can have a significant impact on an individual's life, including his or her reproductive choices.
An expert working group of delegates from the OECD's Working Party on Biotechnology and the Working Party on Information Security and Privacy has been established to study the challenges raised by the interactions between genomics and informatics. The group will review how well existing privacy and data security rules and practices, including the OECD Privacy and Security Guidelines, might be applied to data from genetic testing. It will also consider the social dimensions raised by the growth in availability and use of individuals' genomic data.
The initial study will be carried out over the latter half of the year (2001) through an electronic discussion group.
A Workshop on “Human Genetic Research Databases – Issues of Privacy and Security” was held in Tokyo, Japan on 26th and 27th February 2004. Main Points from the Workshop
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