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The Privacy of Genetic InformationOur ability to test individuals for genetic disorders is increasing dramatically. Testing modalities include diagnostic testing (e.g., confirmatory tests for Huntington's Disease); pre-symptomatic testing for individuals (e.g., BRCA1); pre-natal testing (e.g., amniocentesis to detect trisomy 21); pre- implantation testing of embryos; and population screening (e.g., for Tay-Sachs).
Persons being tested (or, in the case of an embryo, fetus or child, the parents) aren't the only people with an interest in the test results. Family members and potential mates, employers, insurers, the press (in the case of a celebrity) and the government all may desire information about a person's genetic endowment, and their interests may have nothing to do with — or be antithetical to — the welfare of the proband.
To what extent should the proband be able to prevent the information from getting into the hands of others? One issue that arises is whether a physician or other health professional providing genetic testing services should be permitted without the patient's consent or over their objection to reveal test results (or even the fact that a patient has sought genetic counseling or testing) to third parties.
The rule is no different than for medical information in general: confidential information that can be linked to an identifiable patient should be disclosed without the patient's authorization only when necessary to protect third parties from harm or when disclosure is compelled by law (e.g., reporting HIV test results to public health officials).
The question then is: When is disclosure of genetic information permitted in order to protect third parties from harm? For example, can a physician over the patient's objection reveal a positive test result for an inherited disorder to the patient's children, on the ground that disclosure is necessary to enable the children to protect themselves (e.g., by prophylactic treatment or more frequent diagnostic screening) or to prevent the disorder from being passed on to others (e.g., by not conceiving or by testing and aborting an affected fetus)? This is the subject of significant debate within the bioethics community, but the consensus at this time seems to be that the information should not be disclosed over the patient's objection and that the exception to protect third parties should be interpreted narrowly to extend only to a situation in which disclosure would enable third parties to obtain treatment or prevention to avoid fairly immediate, serious health consequences.
The reason for this position is more than just the traditional concern for patient privacy and the need to maintain the integrity of the patient-physician relationship. The problem is the risk of stigma and discrimination, particularly in access to health insurance and employment. For example, many people who reveal genetic test results to their health or life insurers report that they are denied insurance or that their policies are canceled.
To date, legal efforts to protect against genetic discrimination have been incomplete. The recently enacted health insurance reform legislation, the Health Insurance Portability and Accountability Act of 1996, H.R. 3103, requires the Secretary of Health and Human Services to make recommendations on standards with respect to the privacy of individually identifiable health information, but does not specify what those recommendations should be nor whether or in what way they should address genetic information. Senator Domenici (R-NM) has introduced a bill, the Genetic Confidentiality and Nondiscrimination Act of 1996, S. 1898, that would prohibit genetic discrimination, but it has not been enacted.
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