Law 500

Genetic discrimination has moral and ethical implications. The debate over these issues has historical roots. In this article we examine the moral and ethical implications of genetic testing and potential discrimination from perspectives that are dominant in the US healthcare system. In the early to mid 1900s individuals in the US who were continually ill or mentally retarded were involuntarily sterilised. One example of mandatory sterilisation in the US occurred in 1927 when Justice Oliver Wendell Holmes Jr, a well known judge, ruled in the Buck v Bell case in favour of mandatory sterilisation of Carrie Buck. Carrie Buck, her mother, and her seven month old daughter were labelled by the court as feebleminded. This ruling upheld Virginia's 1924 eugenic sterilisation law. Approximately 60000 more sterilisation procedures followed throughout the US.4 The Norplant contraceptive device received attention in the 1990s when judges in several states gave women convicted of child abuse a choice between serving time in jail or using Norplant. The American Medical Association condemned this form of coercion for infringing upon a person's reproductive rights and their right to refuse medical treatment.5

Genetic discrimination continued until the 1970s, when several states in the US required mandatory testing for sickle cell disease among African Americans.2,6 Because sickle cell disease is a recessive trait, carriers of the disease were identified and then notified of the risks of having children with another carrier. African American children were required to undergo mandatory testing before entering school. Having sickle cell anaemia or being a carrier did not prevent a child from entering school. Refusal to participate in genetic testing did. The African American community, bioethicists, lawyers, and the medical profession viewed this as discrimination because other populations were not targeted for other possibly debilitating diseases. Legislation was passed granting...