The Personal Genome Project: A Threat to the Future of Genetic Privacy?

nospam@example.com (Alma Pekmezovic) — Sat, 28 Mar 2009 12:36:44 +1100

The Personal Genome Project recently launched by Harvard Medical School allows individuals to obtain information contained in their DNA. This information is usually unknown to an individual and can be of value in discovering dispositions for developing certain diseases in advance. The information contained in the genetic code reveals hereditary information such as race, physical traits and behavioural pre-dispositions.

The pure relevance of genetic information in predicting the future health status of an individual is questionable though. Most disorders are believed to have both a genetic and environmental component. At best, genetic information may be thought of as a coded probabilistic future diary.

The Personal Genome Project has given rise to concerns within and outside of the scientific community. One key concern is that the Personal Genome Project could result in a significant loss of individuals’ privacy rights. The genetic data of the participants in the Personal Genome Project is made publicly available. In addition, participants in the Project are asked to disclose their phenotype. The objective is to obtain rich holistic genetic and trait data.
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Regulating privacy in the new genomic era

nospam@example.com (Alma Pekmezovic) — Fri, 31 Oct 2008 17:20:31 +1100

The mapping of the ‘standard’ human genome has created a vast multitude of new scientific possibilities. Genome research is potentially a very powerful tool for addressing any medical issue. It has the ability to influence our basic understandings of human life and complex disease. The results of Genome Research offer great promise for unraveling the causes behind various human diseases and providing fundamental improvements in the prevention and treatment of diseases. The transfer of findings from Genome Research into clinical applications which generate novel insights and new methods for therapy are likely to have an enormous impact on human welfare. Yet, despite the potential benefits of Genome Research and the hopes that this strand of research inspires in ill patients, there are many risks associated with Genome Research. Genome Research presents an array of ethical and legal challenges. One of the key challenges facing modern regulators is how to properly deal with the impact of genetic research and novel innovative genetic technologies on the safety and privacy of our personal information.
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Alma Pekmezovic - La Trobe Law Forum

The Personal Genome Project: A Threat to the Future of Genetic Privacy?

Regulating privacy in the new genomic era