Who has control of genetic information?
In this era of rapid communication and data proliferation, absolute confidentiality of medical information no longer seems realistic. In a hospital, anywhere from 60 to 200 people have access to a patient’s medical records. The information is also passed along to insurance carriers and health maintenance organizations. Given that complete privacy is not possible, it is important to consider who has access to genetic information and for what purpose. People questioned about genetic testing worry that insurers will raise rates or refuse to insure them. They express concern that employers will not hire them. There is a general fear that friends and family will treat them differently or abandon them once they are “tarnished” by a deadly gene. Medicine’s obligation to do no harm mandates that genetic information be used in ways that help people, not in ways that stigmatize and marginalize them. 3. What does it mean to offer genetic testing and/or therapy in the absence of universal access t
