AMA Journal of Ethics®

Illuminating the art of medicine

Journal of Ethics Header

AMA Journal of Ethics®

Illuminating the art of medicine

Virtual Mentor. January 2005, Volume 7, Number 1.

Module 3

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Case 3.3: Confidential Care for Minors and Protecting Genetic Information

Related topic: Genetic information

Many people believe that, because of its sensitive nature, some medical information warrants higher standards of confidentiality than other medical information. For instance, psychiatric records and HIV status often are protected more rigorously because of social stigmas and the potential for discrimination based on such information. The following Opinions address physician responsibilities regarding genetic information:

Opinion 2.131, "Disclosure of Familial Risk in Genetic Testing"

1) Physicians have a professional duty to protect the confidentiality of their patients' information, including genetic information. (2) Pre- and post-test counseling must include implications of genetic information for patients' biological relatives...[P]hysicians should make themselves available to assist patients in communicating with relatives to discuss opportunities for counseling and testing, as appropriate. (3) Physicians who order genetic tests should have adequate knowledge to interpret information for patients.

Opinion 2.138, "Genetic Testing of Children"

...Before testing of children can be performed, there must be some potential benefit from the testing that can reasonably be viewed as outweighing the disadvantages of testing, particularly the harm from abrogating the children's future choice in knowing their genetic status...

When a child's genetic status is determined incidentally...[t]his information should not be disclosed to third parties. Genetic information should be maintained in a separate portion of the medical record to prevent mistaken disclosure. When a child is being considered for adoption, the guidelines for genetic testing should be the same as for other children.

Opinion 2.137, "Ethical Issues in Carrier Screening of Genetic Disorders"

All carrier testing must be voluntary, and informed consent from screened individuals is required. Confidentiality of results is to be maintained. Results of testing should not be disclosed to third parties without the explicit informed consent of the screened individual.

There are other situations where genetic information may be sought by third parties. Specifically, insurance companies may attempt to procure a patient's genetic information. Opinion 2.135, "Insurance Companies and Genetic Information" states that "Physicians should not participate in genetic testing by health insurance companies to predict a persons' predisposition for disease. As a corollary, it may be necessary for physicians to maintain separate files for genetic testing results." Physicians should also make it clear to insurance companies that they will not provide genetic information for any of their patients.

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