| Inspired by a recent discussion (see comments to post) regarding transracial adoption here on this blog, I'd like to dig up a couple of previous posts that are relevant. As it is the day after Mothers' Day, I'd like to offer two vault entries for the price of one in honor of all you Moms out there!
Part 2 is a story of research ethics (or lack thereof) and children in foster care. (Read Part 1 here.) Seems from this entry that I had planned on discussing this issue further--"in a future post." Well, that did not happen. But since writing this I have read a couple of very interesting books on related topics: Dorothy Roberts' Shattered Bonds: The Color of Child Welfare and Nell Bernstein's All Alone in the World: Children of the Incarcerated. Both books are well worth the read. And remember: May is National Foster Care Month. (Originally posted 5/10/05) |
A story has been developing for a while now that sits squarely at the intersection of several of my personal and academic interests: adoption/foster care, race and ethnicity, and research ethics.
This story involves the clinical research use of foster children--children whose biological parents' rights had not (yet) been terminated, but who had not been legally adopted: children who were "wards of the State."
One group that raised an alarm about this research was the Alliance for Human Research Protection, a non-profit advocacy group of laypeople and professionals, in a letter from over a year ago:
We have learned that a series of Phase I and Phase II drug experiments were conducted on infants and children who were under the guardianship of the New York City Agency for Children's Services (ACS), and living at Incarnation Children's Center, a foster care facility under contract with ACS. The test subjects were children diagnosed with HIV infection - in some cases infants who were merely "presumed" to be HIV-infected. Phase I and Phase II experiments involve the greatest level of risk and discomfort for children insofar as they test the safety and toxicity of the drugs as well as maximum dose tolerance.
The New York State Department of Health guidelines for children and adolescents, and those of the New York City Agency for Children's Services, facilitate and encourage the enrollment of vulnerable children in foster care - who are wards of the state - in experimental research that exposes them to significant risks of drug toxicity and adverse drug side-effects. Such experiments are unlikely to have any benefit for the test subjects.
...The ACS guidelines apply to foster care children only, thus, the research fails to meet federal regulatory requirements under paragraph (a) of section 409. Furthermore, federal regulations mandate that children who are wards of the state must be protected by a personal advocate for each child for the duration of the research. Such an advocate must agree to act in the best interest of the child, and may not be "associated in any way with the research, the investigator(s), or the guardian organization.
The New York City ACS guidelines waive a foster child's right to individual consent, as herewith stated: "Separate consent need not be obtained for each child."
This waiver, we believe, denies these children their basic human dignity and ascribes to them the status of guinea pigs (emphasis added).
As this month's news stories makes clearer, this research was not just in the state of New York. Associated Press news releases (see, for example, this CBS story) reported that this NIH-suppoted research was conducted over 20 years (most widespread during the 1990s), in at least seven states. (Also see this AP summary, including samples of consent forms.)
I want to discuss briefly three points related to this case. In a future post I may expand on the questions these points raise for me as a graduate student researcher.
I. The last sentence that I bolded in the quote above highlights the first issue that is pertinent for me: the charge that foster children were denied their human rights. By invoking the image of a common rodent, this group was attempting to highlight a particularly unethical way of using these children. (Or, at least it is particularly unethical if you ascribe to a certain view of a division between humans and non-human animals.)
But more importantly, the image was of a common rodent perceived to be employed in laboratory experiments. This suggests for me that we--at least, those of us involved in research--have a particular vigilance that we must observe when we manipulate human beings for the purposes of scientific advancement.
Note that it is not enough that the research in these cases was likely for the purpose of eventually benefitting all children with AIDS. Our current conception of research ethics is structured to protect, at least in part, from the temptation of viewing potential sacrifices of current participants only through the lens of potential benefits to future others.
As Kant might say, our current research participants should be seen as ends in and of themselves; not as means to others' ends.
II. Where the second issue comes into play is the fact that these particular human research participants were children--further, children who were "semi-orphans" under the authority and guardianship of the State.
An assumption is that under normal circumstances we allow children's parents to make decisions on their behalf. This includes making decisions about whether or not to allow their children to agree to be part of research.
There is a whole literature on the role and ability of children in giving consent versus assent to research. What is more relevant here is the question of whether or not the "parent substitutes" in this case (that is, the government and its agency proxies) could truly serve in two roles at once: an entity charged with protecting children and an entity participating in biomedical research.
Children generally are defined in most ethics review procedures as being a "vulnerable population" with regards to research (due to their dependent status, lack of direct legal rights, developing cognitive and decision making abilities, etc.) and thus deserving of special protections. Foster children more specifically are in an even more vulnerable position due to their ambiguous status betwix the family and child welfare systems.
Interestingly, there is one short paragraph in the Dept of Health and Human Services (NIH, Office for Protection from Research Risks) guide PROTECTION OF HUMAN SUBJECTS dealing with foster children (?46.409 Wards); There is an entire subsection dealing with prisoners, another "vulnerable population" that is under the direct authority of the government.
III. The third issue I want to discuss combines and then expands the previous two:
Yes, as a human being who also happens to be training to become a researcher, I find it troubling any time it appears that researchers may not have fully considered the humanity of their subjects before embarking on and proceding with a research study--
Yes, as an advocate for children and for a view that children's development usually procedes most optimally in the context of family environments, I find it troubling any time it appears that a government institution may have taken advantage of its power to dissolve families and take guardianship of children--
But these two troubles are compunded when race is added to the mix.
AP quotes that appeared in many of the stories of this research (e.g., see here) often mentioned race and class fairly briefly, almost in passing. For example:
...The practice ensured that foster children ? mostly poor or minority ? received care from world-class researchers at government expense, slowing their rate of death and extending their lives. But it also exposed a vulnerable population to the risks of medical research and drugs that were known to have serious side effects in adults and for which the safety for children was unknown.
This mention (my emphasis added) and others like it makes this whole episode so much more troubling, invoking for me images of Tuskegee (and here) and "Mississippi apendectomies" and all manner of other US government-sponsored and -condoned research, technological, medical and scientific abuses against African Americans, other minorites, and the poor.
Add to this sad history the current charges of racial disparities in the child welfare system and you've got a uniquely troubling mix. There has been a lot written recently about the role of race in decision making and actions regarding the removal of children from their homes and termination of these children's parents' parental rights. One voice in this discussion has been that of Dorothy Roberts, for example in this essay in response to a Frontline program about the child welfare system:
White children are the least likely of any group to be supervised by child protective services. Black children make up more than two-fifths of the foster care population, though they represent less than one-fifth of the nation's children. Latino and Native American children are also in the system in disproportionate numbers. The system's racial imbalance is most apparent in big cities where there are sizeable minority and foster care populations.
However, according to Roberts this disparity is likely not just about poverty:
Even though black children are more likely to be poor than white children, racial differences in child poverty rates don't fully explain why black children are placed in foster care at higher rates. Race also influences child welfare decision-making through powerful, deeply embedded stereotypes about black family dysfunction. Black families diverge the most from the parenting ideal embodied in the white, middle-class model composed of married parents and their children. Black mothers are assumed to be irresponsible and difficult to rehabilitate. A number of studies demonstrate that caseworkers, judges, and doctors are more suspicious of non-white parents.
I know of a case of a small pediatric group practice headed by two African American physicians serving a largely Black and low-income client population. These two experienced doctors had become so fed up with emergency room personnel automatically calling social services on their patients that they requested that one of them be called before any hospital staff takes such action in order to provide input, context--even advocacy.
What an unenviable position to find yourself in as a physician: treating your patients by, in part, protecting them from the actions of other physicians.
SO. The severity of the problem becomes clear:
(1) Foster children have the potential to become convenient and easy pickins for researchers needing large numbers of particpants.
(2) As participants they may be lacking in the most basic personalized and individualized advocacy, given by adults with a vested interest in protecting their well-being.
(3) Their status as largely minority and poor makes them even more vulnerable to such devaluation--and makes their parents and other family members less likely to be seen as appropriate gatekeepers.
...Again, I may return to this at a later point. For now, it's enough to observe that this confluence of factors does not put us academic and medical researchers in a very good light. Nor do the ongoing insistences on the part of those responsible for these studies that "nothing wrong" took place.
UPDATE: May is National Foster Care Month:
http://www.fostercaremonth.org/Home/
NPR story: Black Children in the U.S. Foster Care System
Posted by perry032 at May 15, 2006 01:48 PM | TrackBack