July 1, 2008

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

This paper explores the ethical issues that are involved in providing medical treatment to foster children who are HIV positive, and their involvement in medical research. It traces the history of the involvement of foster children in HIV medical trials in an attempt to test HIV drug treatments in children, and discusses the application of the Belmont Report that protects research trial participants. It is argued that it becomes unethical to enroll foster children, who have been diagnosed with a terminal illness, in medical research unless these children are given the respect owed to them by first disclosing the illness, allowing them the opportunity to discuss the illness, and allowing them a role in deciding whether they should participate in research when no medical treatment is available. Strategies researchers can use to assure the informed assent of a child are explained and findings that support the ability of terminally ill children to understand death and to make medical decisions are shared. Finally, guidelines are recommended involving foster children in clinical trials.