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| Article - Abstract. To view full article click on the article title. | |
eMJA: Kirby, The Human Genome Project in the Dock The Human Genome Project in the Dock, Michael Kirby. From a scientific viewpoint, the Human Genome Project is actually not in the dock, nor even under reasonable suspicion of wrongdoing. Overwhelmingly, it will prove of benefit to humanity. However, from legal, ethical and other societal points of view, there are many problems already being considered by bioethicists, philosophers, religious experts, lawyers and others in dialogue with scientists. MJA 2000; 173: 599-600 I have just returned from meetings of the Ethics Committee of the Human Genome Organisation (HUGO) -- established by leading genome scientists in 1989 to promote international collaboration in the Human Genome Project (HGP)1 -- in London, and of the International Bioethics Committee (IBC) of the United Nations Educational, Scientific and Cultural Organisation (UNESCO) in Quito, Ecuador. At international meetings such as these, in national bodies, in lawmaking institutions and universities, a lot of minds are identifying the chief problems of the HGP. Some of these problems are comparatively straightforward. Others are complex and fundamental. Manageable problems Privacy and confidentiality: Patient confidentiality has long been fundamental to the healthcare professions, having its roots in rules even older than the Hippocratic Oath. However, when a disorder is the result of a genetic characteristic, is the "patient" solely the individual, or does the entire family have rights? Are there circumstances in which family members should be entitled, by law, to override an individual's desire for privacy to obtain information relevant to genetic conditions that may also affect them? Should a patient have a right not to know the genetic determinants of likely future medical problems? How do we reconcile the rights of the individual with the fact that genetic data may be very important for others, and how do we prevent discrimination based on such data? Third-party interests: The previous questions lead naturally to the legal rights of third parties. Full Article: http://www.mja.com.au/public/issues/173_11_041200/kirby/kirby.html |
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2006 Ethics-Governance.com |
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