The insurance company rejected her because they found a note about her father's diagnosis written in the margin of her medical records. A healthy boy who carried a gene predisposing him to a heart disorder was denied health coverage by his parents' insurance company, even though the boy took medication that eliminated his risk of heart disease. Genetic privacy, like medical privacy in general, involves notions of the dignity and integrity of the individual. Data should only be collected voluntarily, using modern notions of informed consent. The scope of the informed consent should define future allowable uses of the samples.
Genetic discrimination is the other major civil liberty threatened by genetics research.
On Monday, President Clinton announced his support of a Federal bill which would prohibit health insurance providers from using any types of genetic information for making decisions about whether to cover a person or what premium to charge. This legislation would address some of the discrimination problems which have been occurring. Beyond the risk of discrimination, however, society's fascination with genetic determinism has other social and political consequences. An overemphasis on the role of genes in human health neglects environmental and social factors. For example, strong evidence points to links between environmental contamination and cancer.