HIV Positive Foster Children in Medical Research: Ethics of Disclosure and Assent

Abstract

In the early nineties, large numbers of HIV positive children entered the foster care system. At this time, there was no medical treatment available for use in children. A large number of these HIV+ foster children were placed in medical research trials in an attempt to find a safe effective treatment. Medical research conducted on HIV+ children has transformed a once life-threatening illness into a chronic manageable disease. Because children are not always capable of assenting to this research it is important that an independent advocate consents for them. The children should, at a minimum, understand the nature of their illness and that what they are participating in is medical research. Therefore, in order for medical research to occur with foster children who are suffering from a life-threatening illness, the children must know their health status and be allowed to participate in the assent process.