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On September 15, 2011 dozens of families in the Baltimore, Maryland area filed a class action lawsuit against Kennedy Krieger Institute (“KKI”) accusing KKI of knowingly exposing black children to lead poisoning in connection to a 1993 human research experiment. Best explained in the suit, “Children were enticed into living in lead-tainted housing and subjected to a research program [through the consent of their parents] which intentionally exposed them to lead poisoning in order for the extent of the contamination of these children’s blood to be used by scientific researchers to assess the success of lead paint or lead dust abatement measures.” NY Times Article–Racial Bias Seen in Study of Lead Dust and Children
Amongst the plaintiff’s claims against KKI is failure to obtain informed consent. The plaintiff’s argue that KKI’s actions were taken without informed consent because parents cannot consent to non-therapeutic research on minor children.
In a normal medical innovative context, parental consent on behalf of a child does not appear to be an issue. Doctor’s are allowed to use innovative therapeutic techniques that could directly benefit their patient and parents are allowed to consent to therapeutic measures that benefit their children. There, however, appears to be an issue with the validity of parental consent in the context of human experimentation because experimentation is not beneficial to the child.
The present KKI case highlights the issue with human experimentation and child participants. It also presents the hotly debated issue of whether a parent should be able to consent on behalf of their minor child to participate in non-therapeutic human experimentation. Although the issue was not clearly presented in a 2001 suit for the same study, a Maryland court of appeals answered in the negative. Maryland Lead Paint Case
I too agree with the plaintiff’s and the 2001 Maryland court of appeals decision. Parents should not be able to consent on behalf of their minor child to participate in non-therapeutic human experimentation. The theory of informed consent is grounded in the common law idea that every man has a right against unwanted bodily invasion. With children, this right is framed differently because children are thought to lack the capacity to make decisions in their best interests. Parents are therefore given the right to consent to medical decisions for their minor child under the premise that the parents have the best interest of their child in mind. Thus, parents are entrusted to act in the best interests of the child by consenting to things that will benefit the child.
Human experimentation, arguably, does not confer a benefit on the child. It, instead, confers a benefit on society with new knowledge that could potentially aid the greater community. Despite the benefits conferred upon society, allowing parents to consent experimentation on a child directly contradicts the rationale for allowing parents to consent. In fact, it subjects unknowing subjects to risks that the subject has not consented to. Parental consent thereby, acts as a free pass around required informed consent from the participant in human experimentation.