Seen in the The Baltimore Sun:
The Sun‘s article on the Senate’s vote to bar discrimination based on the results of genetic testing (“Measure would bar use of information by insurers, employers,” April 25) failed to address the key problem with personal medical information in America: Why do insurers, employers and others have access to the data in the first place?
A person’s genetic test results, and all of his or her medical data, should not be available to anyone without the patient’s consent.
One’s employer should not even know he or she has had testing done, let alone know the results.
The sad fact is that the regulations under the Health Insurance Portability and Accountability Act, which were intended to extend patient privacy as we moved from a paper-based system of medical records to a digital system, are a sham.
HIPAA allows the routine release of personal health information without patient consent or knowledge, and even over a patient’s objection.
If our data were kept private in the first place (in accordance with the centuries-old traditions of medical ethics), Congress would not need to pass a law to bar discrimination based on the results of genetic testing.
Janis G. Chester
The writer is president of the American Association of Practicing Psychiatrists.