Pride and Prejudice: Avoiding Genetic Gossip in the Age of Genetic Testing
Darlyn Pirakitikulr and Harold J. Bursztajn
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).
. . .
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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