Janlori Goldman Discusses Privacy on ‘Morning Edition’
Janlori Goldman, director of Georgetown University's Health Privacy Project, discussed the need for health care privacy rules this morning on NPR's "Morning Edition." Goldman "salutes" new rules implemented in April by the Bush administration, which she said will prevent consumers from becoming "unwitting victims." Under the new rules -- which are expected to "take hold" in two years, though administration officials have said they will likely make some changes -- patients will have access to their own medical records and be "able to put a limit on other peoples' access" to those records. Doctors and patients "have lost control over" medical records, Goldman said, adding that although physicians "for thousands of years" have taken an oath of confidentiality, today it is difficult for them to limit who has access to records because they must provide health plans with medical records to receive reimbursement. Goldman said that health plans do not have the same "confidentiality duty" to patients and often use the information for marketing or research purposes. Health plans, hospitals and drug stores also may sell patient information to other organizations. But Goldman said that the real concern for most consumers is employer discrimination and that there are "many, many stories" about employees being fired or otherwise discriminated against because of health information. Goldman cited a recent case before the Equal Employment Opportunity Commission, in which a North Carolina woman was fired after a test found she had a genetic predisposition for a disease. Goldman said, "The sad thing [about cases like this] is that people are already afraid to get genetic testing and counseling" or to talk to their doctor about sensitive conditions. "We don't want privacy to be a barrier to getting health care," she said.
Mental health information is a particular concern for many patients, Goldman said, adding that mental health professionals must share "very detailed patient data" with insurers to receive reimbursement. Goldman said that almost "20% of people in this country either pay out of pocket or lie to their doctors or keep information out of their record" if they receive treatment for mental health, sexually transmitted diseases, reproductive health or genetic counseling. Those who can't afford to pay out of pocket may also avoid getting treatment altogether. Asked if "secrets belong to the rich," or those who can afford to get treatment without going through an insurance company, Goldman said, "Yes, people who have money can better protect their privacy. They can get the health care they need" (Stanberg, "Morning Edition," NPR, 5/15). Visit "Morning Edition" at http://www.npr.org/programs/morning/ after noon ET/9 a.m. PT to hear this report. Note: You will need RealAudio.This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.