Abstract only published in proceedings of conference.
Following the completion of the 13 year human genome project (HGP) in 2003 in which American British, Japanese, Chinese, French, German and other international scientists succeeded in identifying the approximately 20 – 25 000 genes in human DNA and laid the framework for mapping the sequence of the 3 billion chemical base pairs that form genetic makeup of the human species, the Genetic Non-discrimination Information Act of 2008 was passed in the US which sought to eliminate unfair discrimination based on genetic information. Whilst the human genome project has produced undoubted medical benefits such as making possible new gene therapies, much of the research into the performance of specific human proteins in the DNA makeup is being carried-out by private companies. Such a market-based approach to furthering the potential of the human species based on its genetic makeup risks the associated inequalities stemming from the uneven distribution of and access to medical technologies based on the consumer-driven model. Consequently, this discussion paper asks, how do we apply ethics in such a far-reaching socio-political context? What relation does the ethical use of research based on the Human Genome Project have to laws that are passed to protect citizens from the application of genetic data in the market place?
Strongman, L. (2012). Nature or Nurture: The cultural implications of fairness in the ethics and law of the human genome project. In Australasian Association of Bioethics and Health Law (Ed.), Proceedings of the Harm, Health and Responsibility: Australasian Association of Bioethics and Health Law Conference 2012 (p. 23). Auckland, New Zealand: Australasian Association of Bioethics and Health Law.