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Following the August 16, 2001 landmark
decision of the Maryland Court of Appeals, the
Alliance for Human Research Protection (AHRP) became interested in the
case involving exposure of children to lead paint. We were particularly
drawn to the Court's clear and unambiguous recognition of the rights of
children and their families to appropriate safeguards in medical research
settings.
http://www.courts.state.md.us/opinions/coa/2001/128a00.pdf
We believe the Court has clearly and
unambiguously ruled on matters that have long needed judicial attention.
Our Amicus brief (attached)
provided the Court with a litany of additional cases demonstrating that
the lead paint case, while in and of itself ethically questionable, is
not unique, but is symptomatic of pervasive and widespread deficiencies
in the medical research enterprise.
In our Amicus brief we have urged the
Court to rule against motion for reconsideration by Kennedy Krieger Institute
and their powerful supporters: Johns Hopkins University, Association of
American Medical Colleges, Association of American Universities, University
of Maryland, and Medical System Corp.
The Alliance for Human Research Protection
(AHRP) is an association of individuals concerned about the safety and
welfare of human subjects in medical research. AHRP members bring varied
professional perspectives including law, medicine, psychology, psychiatry,
social work and nursing to this task. Each member of the steering committee
has particularized expertise in working with children or advocating for
the best interests of children.
Beyond the varied professional backgrounds
and experiences we bring to this task, we offer a unique point of view
to this issue in that none of us have direct financial interests in the
medical research enterprise. Thus, our perspective on this matter may
more closely reflect the population impacted by the Court's decision:
all potential research subjects and, ultimately, the public at large.
AHRP is deeply concerned about the inadequacy
of current public policies and oversight governing the conduct of medical
research÷particularly research involving children.
We believe that the Court's decision
in these cases provides long-needed clarification and guidance for the
ethical conduct of medical research, particularly as it affects children
and others under a legal disability. In our Amicus brief we address the
Court's decision as a well-conceived statement of the rights of children
serving as medical research subjects and the legal standards to which
researchers are to be held.
The following individuals serve on AHRP's
steering committee:
Christopher Barden, Ph.D., J.D. is a
psychologist and attorney.
Howard Fishman, M.Ed., M.S.W. is a consultant
and expert witness on child welfare issues.
Loren Mosher, M.D. is a psychiatrist
who is retired from the National Institute of Mental Health.
Jack Noble, Ph.D. is an endowed professor
for social justice at Catholic University.
Kay Perrin, R.N., Ph.D., Public Health
and child and family well-being, University South Florida.
Sally Rogow, Ph.D., professor emerita,
and specialist in children with Disabilities U. of British Columbia.
Vera Sharav, M.L.S., developed a database
to track ethical violations in research and organized the Alliance for
Human Research Protection. |