[Med-privacy] GINA

[peter marshall]

May-6-2008
Anti-Discrimination Bill Inadvertently Legalizes Sharing of Genetic=20
Information Without Patient Consent
The Institute for Health Freedom has published a new article on its=20
site:

     =93While authors of the recently passed Genetic Information=20
Nondiscrimination Act of 2008 (H.R. 493) had good intentions, the bill=20=

inadvertently legalizes the sharing of genetic information without=20
patient consent,=94 says Sue Blevins, president of the Institute for=20
Health Freedom (IHF). =93It does so by applying HIPAA regulations to=20
genetic data.=94

     Blevins points out, =93HIPAA regulations permit data sharing =
without=20
patient consent in connection with treatment, payment, and oversight of=20=

the health-care system (=91health-care operations=92). Thus, by passing =
a=20
bill that says HIPAA regulations apply to genetic information, Congress=20=

unintentionally legalized the sharing of information among many=20
health-care =91covered entities=92 without patient permission.=94

     The bill passed the Senate late last month, a year after the House=20=

approved its own version. Differences between the two were resolved May=20=

1, and the final bill has been sent to President Bush.=92

     In a letter published in the Baltimore Sun regarding the Senate=92s=20=

vote on the anti-discrimination bill, Janis G. Chester, M.D., president=20=

of the American Association of Practicing Psychiatrists, stressed: =93=85A=
=20
person=92s genetic test results, and all of his or her medical data,=20
should not be available to anyone without the patient=92s consent. One=92s=
=20
employer should not even know he or she has had testing done, let alone=20=

know the results. The sad fact is that the regulations under the Health=20=

Insurance Portability and Accountability Act [HIPAA], which were=20
intended to extend patient privacy as we moved from a paper-based=20
system of medical records to a digital system, are a sham. HIPAA allows=20=

the routine release of personal health information without patient=20
consent or knowledge, and even over a patient=92s objection=85.=94=