Pride and Prejudice: Avoiding Genetic Gossip in the Age of Genetic Testing

Darlyn Pirakitikulr and Harold J. Bursztajn

The Journal of Clinical Ethics
Volume 18, Number 2, Summer 2007

Introduction: The Promise of Genetic Information

Genetic testing holds increasing promise. As accurate, comprehensive, and inexpensive genetic testing becomes increasingly available, it becomes possible to measure the probability and magnitude of various maladies, making detection, treatment, and prevention all the more effective. So great is the promise that recently there have been increasing calls for including genetic information as a dimension even in revisions of the standard diagnostic nomenclature of such a far-afield specialty as psychiatry, as it proceeds with its fifth edition of the Diagnostic and Statistical Manual (DSM V).

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Acting today to provide an ounce of genetic privacy by re-establishing general HIPAA informed consent provisions for the release of any patient's medical information is consistent with good clinical care and patient safety. There is no convincing evidence that reinstituting informed consent provisions will make payment processes or healthcare operations unwieldy. Because covered entities need to ask patients to sign HIPAA notices, for the same amount of effort, they can also ask for patients' consent. Furthermore, failing to use an informed consent process for the release of medical records containing genetic information may lead to an increased tendency toward "group think," such as overconfidence in interpreting often-ambiguous genetic information. In such a situation, clinically useful information regarding genetic potential can be reduced to the equivalent of sound bites. When such clinically useful information is diluted in this way, the seeds of stereotyping and discrimination are sown. An ounce of genetic privacy, achieved via informed consent, is worth more than any pound of genetic discrimination cure tomorrow by the U.S. Equal Employment Opportunity Commission or the judiciary.

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