|
 |
|
 |
|
 |
 From The Desk Of
Ron Walters
Columnist Page
Friday, May 13, 2005; Page 22
Minority Foster Children Used as Guinea Pigs in HIV Tests
Here we go again. The Associated Press has just reported that some minority foster children who are HIV-infected have been used in medical experiments to test potential AIDS drugs by federally funded researchers without the proper protection of their rights. The research was funded in the 1990s by the National Institutes of Health for foster care agencies in the states of Illinois, Louisiana, Maryland, New York, North Carolina, Colorado and Texas that were seeking treatment for the disease for poor and minority children. The trade-off, however, appeared to be that children were delivered into the hands of researchers who did not abide by the formal guidelines for "Protection of Human Subjects" that all researchers are expected to follow.
The result was that many of the children in these studies suffered unknowable harm to their health. Others suffered side-effects, such as rashes, vomiting, sharp drops in infection-fighting blood cells, and even higher death rates. The guidelines for Protection of Human Subjects are applicable to most universities and research institutions in the country and mandate that the researcher inform the research subject who is cooperating with the study of the possible side-effects and other aspects of the process. But the problem is compounded when children or youth who have not reached legal age and do not have parents are included in such studies, because parents or legal guardians are the ones who consent to the involvement of children in such research.
Because there were no parents in the case of this AIDS research, researchers promised NIH in writing that they would use advocates for each child even though they failed to do so. The Associated Press indicated that Illinois officials believe none of their foster children in the Chicago Children's Memorial Hospital study were afforded such protection, Columbia Presbyterian Medical Center in New York City found advocates for about one-third (142 of 465) of the children used by researchers in their state and John Hopkins University Hospital in Baltimore said they provided no advocates for the children in their study.
Oddly enough, the office for the Protection of Human Subjects at NIH was created after the infamous Tuskegee Syphilis experiments that involved Black men in the 1930s. However, the record of this office has been spotty at best in protecting minority children from medical exploitation.
I was involved in a case in the early 1990s of medical research that NIH was funding in several cities that sought to find out whether minority youth who committed violent acts were susceptible to violence because of their genetic heritage. This research came to light because a director of the Alcohol and Drug Abuse Institute said that he could deal with the problem of youth violence by just finding a "genetic marker" for violence and treating the youth with a violence-inhibiting drug before the age of five. The outrage of this plan attracted the attention of the Congressional Black Caucus and the new Secretary of Health and Human Services (the parent body of NIH) and before long, this director was gone. He was gone, but the research continues until this day!
The fact that we have yet another Tuskegee-type case of illegal and unethical medical experimentation involving Blacks and other minorities should again invite vigorous examination by the CBC and other leaders in the Black community. One major reason for such oversight is that Blacks harbor legitimate suspicion about medical experimentation due to such cases that keep feeding it.
In 2003, a report was released by the Institute of Medicine, also at NIH, that in part supported the view that racism was a powerful source of the gap in a variety of Black and white diseases. The report suggested that because racism contributed to the reticence of Blacks to seek medical assistance, the gap might be narrowed if they had more confidence in the American medical establishment.
Another change might also help. When we were attempting to bring attention to the responsibility of NIH to monitor research proposals to exclude the racist research involving genetics and violence, I proposed that changes should be made to the process involving the protection of human subjects.
The NIH board for the Protection of Human Subjects is made up largely of scientists, but there needs to be more ethicists and even social scientists whose job it is to be sensitive to the social implications of such research.
The National Institutes of Health have responded to this recent case meekly by looking at an institution in one state, but funding for all of them should be halted and the process strengthened. And our medical centurions should see that it is done.
Dr. Ron Walters is the Distinguished Leadership Scholar, Director of the African American Leadership Institute, and Professor of Government and Politics at the University of Maryland College Park. His latest book is: White Nationalism, Black Interests, by Wayne State University Press. |
|
|
|