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

Saturday, March 28. 2009
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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Genetic Discrimination - A Double Edged Sword

Wednesday, March 18. 2009

The brave new world of genetic screening to identify any genetic predisposition to particular diseases has opened a Pandora’s box in the realms of equality, human rights and social justice to name a few. Geller et al have defined genetic discrimination as the differential treatment of individuals or their relatives on the grounds of actual or presumed hereditary differences.  

It must be conceded that the advantage of genetic screening at birth or an early age, enables carefully planned medical management aimed to postpone the onset, effectively treat, and possibly cure genetically based conditions.  The other side of the coin is not as encouraging, such genetic information may be used by organisations such as life insurance companies to restrict or deny insurance on the grounds of family history of disease or the results of genetic screening, which is argued to amount to genetic discrimination.

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We need a 21st century framework for regulating assisted reproduction in Victoria

Tuesday, December 2. 2008

Since Victoria passed the first Australian statute regulating assisted reproductive technologies (ART) in 1984 the law in this state has been regarded as more prescriptive than in other jurisdictions. The current statute excludes many women from parenthood and breaches federal discrimination law. Recently, the Brumby Government introduced the Assisted Reproductive Treatment Bill 2008 into the Parliament to provide a new regulatory framework controlling the ART services. This initiative is well overdue as the law is inflexible and lags behind the fast moving developments in reproductive technology. Furthermore, the failure of the Victorian law to address the needs and challenges of a pluralistic society has led to a growth in reproductive tourism and those who don't qualify for treatment can evade the law by travelling interstate or overseas. Reproductive tourism maximises reproductive choice but only for those who can afford to travel to more liberal jurisdictions.

The Bill expands reproductive choice by dismantling discriminatory eligibility rules and introducing new altruistic surrogacy laws. However, in order to protect the interests of children born through ART, the Bill also limits reproductive choice with the introduction of a 'presumption against treatment' condition. These changes are likely to provoke vigorous public debate.

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Regulating privacy in the new genomic era

Friday, October 31. 2008
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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