Privacy Fears May Deter HIV Patients From Treatment

WESTPORT, CT (Reuters Health) Aug 27 - HIV-infected patients are often concerned about the confidentiality of their HIV-positive status. In fact, some patients are so worried that they will actually forgo treatment to prevent the release of this information, according to a report published in the August issue of AIDS Care (AIDS Care 2001;13:457-466).

Dr. Kathryn Whetten-Goldstein and colleagues from Duke University in Durham, North Carolina studied the confidentiality issues of 15 HIV-infected patients. The patients were from rural North Carolina locations and each participated in focus groups designed to explore their attitudes toward and experiences with breaches in confidentiality.

"The fear of a breach in confidentiality is definitely affecting the care that HIV-infected patients receive," Dr. Whetten-Goldstein told Reuters Health. "Most study patients had experienced or knew someone who had experienced a breach in confidentiality," she stated. "Two types of breaches occurred," Dr. Whetten-Goldstein noted. "The first was a more obvious type of breach," she said. "One example was a nurse who told her child that her patient was HIV-positive out of concern that her child would play with the patient's child," she noted.

"The other type of breach was more subtle, one that providers might not consider breaches," Dr. Whetten-Goldstein stated. "This type of breach involves providers talking about a patient's HIV status without the patient's knowledge of the interaction," she said.

"The law allows the sharing of information between providers within the same institution," but patient consent must be obtained before providers at different institutions can share information, she pointed out.

"Patients in the study wanted providers to tell them when they are going to share information with other providers and why it is being done," Dr. Whetten-Goldstein noted. "They also felt that providers should be punished when a breach occurs. However, because patients are often reluctant to seek legal action which may further expose their status, they felt that the system should regulate itself," she added.