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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