Research on Foster Children: A Role for Social Work
Gustavsson, Nora S., MacEachron, Ann E., Social Work
In Spring 2005, media outlets began reporting on the use of foster children in drug experiments ("AIDS Drugs Tested," 2005). Although this may have been new information to major U.S. outlets, the BBC began reporting on the testing of AIDS drugs on foster children during fall 2004 (Doran, 2004). Vulnerable children in state custody have been subject to experiments in the past--for example, the 1950s radioactive milk testing on developmentally disabled children at Fernald and the 1960s hepatitis testing on developmentally disabled children at Willowbrook--experiments that were so egregious that procedures to ensure the protection of human subjects became a requirement for anyone receiving federal research support (Resnick, 2005). One such protection is the appointment of independent advocates to ensure that safeguards are in place and that children are not exposed to unjustified risk of harm. It is urgent that professional organizations such as the National Association of Social Workers (NASW), the Child Welfare League of America, the Children's Defense Fund, and other groups expand their efforts on behalf of children used as research subjects.
On June 29, 2005, the U.S. Senate passed two amendments to limit the testing of pesticides on humans ("Critics Claim," 2005). These amendments were in response to a plan by the Environmental Protection Agency (EPA) and the chemical industry to pay parents to apply pesticides and chemicals in rooms primarily occupied by infants. After much discussion, the EPA announced new rules on dosing children with pesticides on January 26, 2006. The rules indicated that human subject protections would be advanced to pregnant women and children. There are, however, exceptions to these protections. Only studies that fail to substantially comply with the new rules will be rejected. If there are significant public health benefits, the EPA may choose to accept ethically flawed studies (Stokstad, 2005). These exceptions indicate that children may still be subject to pesticide testing.
THE NATURE OF THE RESEARCH ON FOSTER CHILDREN
The facts so far appear to be that dozens of federally approved clinical trials testing AIDS drugs used foster children in at least seven states (Colorado, Illinois, Louisiana, Maryland, New York, North Carolina, and Texas). The adequacy of the protection of these foster children is in question (Solomon, 2005). There is much speculation about the AIDS drug testing and how much injury may have been sustained by the children ("Saying 'No,'" 2005). As more details of the drug testing have become known, there appear to have been violations of the mandated human subject protections required of researchers by the federal government. On May 18, 2006, the House's Subcommittee on Human Resources began an investigation into these and other possible violations of federal protections for human subjects. Investigations are continuing, and more details will be revealed in the coming months ("Special Protections," 2005).
For two decades, the National Institutes of Health (NIH) has conducted medical research on AIDS drugs using children as test subjects. During this same time period (the 1980s and 1990s), children with HIV were entering the foster care system in significant numbers (Scott & Kaufman, 2005). The long-term prognosis of these children was poor given that the battle against AIDS was in its early stages and medications were limited and often toxic even to the adults using them. Effective drugs were unavailable for the pediatric population because they had not been tested on infants and children. Drug trials with children were the only way to establish the drugs' effectiveness and safety. Not to do the research would have delayed treatment and might have resulted in more illness and death among the child population. Clinical drug trials would provide more information.
Clinical drug trials are classified by stage. Early trials--stages I and II--test the drug's safety, look for toxic side effects, and try to determine the amount and frequency of dosage by weight. …