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

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. The implementation of the Personal Genome Project poses threats to the participants’ personal privacy and security. However, the participants expressly agree to public disclosure of their genetic information and thus implicitly consent to any consequences which may flow from such disclosure.

What is problematic though is that the decision to undergo genetic screening in the Personal Genome Project affects not only the participant but the participant’s family. The involvement in the Project exposes participants’ genetic relatives to risks and makes them vulnerable to exploitation by third parties. It significantly erodes their privacy interests and limits their ability to control how their genetic information is used.

Public disclosure of genetic information can result in various forms of unauthorised use, acquisition and distribution of genetic information. Genetic information could be used to stigmatize and victimize the ‘genetically unfit.’ Genetic discrimination against such individuals may produce divisions in society between the genetic-haves and have-nots. It has the potential to cause grave harm to individuals who posses undesirable traits by making them and their descendants completely uninsurable or subject to higher insurance premiums.

Moreover, individuals with genetic abnormalities may face difficulties in securing employment because of their potential susceptibility to future diseases. The potential for economic and social discrimination exists even though the individual may not develop the diseases to which they are amenable. Genetic discrimination may solely be based on the fact that an individual carries a genetic mutation. The availability of genetic information induces insurers and employers to take into account the risk that an asymptomatic individual may eventually become symptomatic.

As we enter into a new era in which personal genomics is likely to play a more pronounced role, it is not inconceivable that presidential candidates may be tempted to release their genetic information to draw attention to favourable traits and a positive ‘genetic background.’ Alternatively, genetic information may be used in elections to discredit political opponents and raise doubts about their credentials. It is difficult to predict though how the public will view and use such information. Personal genomics may become one consideration amongst a larger set of considerations the public is willing to have regard to when electing political candidates.

Given the range of forms that genetic discrimination could potentially take, it is essential for legislators to consider whether and how to protect the disclosure of genetic information. One possibility may be to treat genetic information as a sub-category of medical information and afford it protection under privacy laws.

The precise legal parameters of the notion of ‘genetic privacy’, however, are not well defined. Privacy in this context may be conceptualised as a fundamental human right. The Universal Declaration of Human Rights (UDHR) and the International Covenant on Civil and Political Rights (ICCPR) both recognize privacy as a distinct human right. Both Article 12 of the UDHR and Article 17 of the ICCPR state that: ‘No one shall be subjected to arbitrary interferences with his privacy, family … or correspondence. Everyone has the right to the protection of the law against such interference or attacks.’ The transposition of UDHR and ICCPR into domestic law may provide some scope for casting genetic privacy as a human rights issue.

If genetic information is viewed as separate from other types of medical information, it may be required to enact genetic-specific laws which deal with various issues such as genetic ownership, genetic privacy and the collection, use and disclosure of genetic information.

Defining what constitutes ‘genetic’ information is difficult. Genetic information serves as an umbrella term for many different types of information about an individual. It may, therefore, be necessary to split the category of genetic information into further sub-categories for legal purposes. These sub-categories could be afforded different degrees of legal protection, depending on how ‘sensitive’ the information is.

The implementation of the Personal Genome Project is at a relatively early stage and many ethical and legal issues surrounding the Project require further attention. The Project sparked a vivid debate about the permissible uses of genetic information within our society. Over the next few decades, it is likely that the range of genetic testing technologies will expand. The proliferation of new genetic technologies may bring about a shift from conventional medicine – i.e. medicine based on a pattern to diagnosis and treatment of diseases – to preventative medicine which seeks to predict the likely health status of an asymptomatic individual on the basis of her genetic make-up. The new technologies provide new opportunities and threats, challenging our efforts to protect personal information.


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