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International Childhood Cancer Cohort Consortium September 2011 Meeting Barcelona, Spain. Carol H. Kasten, M.D. Geneticist and Lead for Genomic Studies US National Children’s Study National Institutes of Health. BROCHER FONDATION SYMPOSIUM RECOMMENDATIONS. 7-8 MARCH 2011
Carol H. Kasten, M.D.
Geneticist and Lead for Genomic Studies
US National Children’s Study
National Institutes of Health
7-8 MARCH 2011
“Ethical Issues in the Use of Neonatal Screening Bloodspots in International Population - Based Studies of Childhood Cancer”
Possible Venue for Conference on Ethical Issues
NEONATAL BLOOD SPOTS RESEARCH
SCIENCE April 2009 – J. Couzin-Frankel
SCIENCE August 14, 2009
Context limited to internationalchildhood cancer research
Use of AIMs in research
CHARGE TO SYMPOSIUM
Consensus from the March 2011 Brocher Symposium:
There is an urgent need for internationally-accepted ethics policies for large data pooling studies on childhood cancer using DBS and AIMs.
“…on the shores of Lake Geneva…”
Just Some of the Contributors…
We thoroughly support the view expressed in the editorial “There will be blood.”1The issue raised has become urgent with the June 2011 publication of Chang et al’s "Profound Deficit of IL10 at Birth in Children Who Develop Childhood Acute Lymphoblastic Leukemia” which reported that IL10 levels measured in archived dried blood spots (DBS) were profoundly lower in cases of children who went on to develop childhood acute lymphocytic leukemia than in controls.2 If validated, this research will have provided us with the first biomarker for later onset of childhood cancer. The potential of this research should not be underestimated nor should the ethical hurdles which may be constructed if countries around the globe do not heed the editorial warning.
At the March 7-8 2011 International Brocher Symposium “Ethical, Legal, and Social Issues in the Use of Neonatal Blood Spots for Population-Based Research on Childhood Cancer,” experts emphasized the urgent need for internationally accepted ethics policies for use of archived DBS in research.3 Without these changes to collection and DBS storage policies, data pooling across countries which is essential for finding the causes of childhood cancer, will not be possible.4 As a result of new research and policy documents presented at the Symposium, participants have initiated development of guidelines to facilitate the use of DBS in international data-pooling research. As emphasized in the editorial, there was a strong consensus at the Symposium that the public, parents, and policymakers must be engaged in this process. The international implementation of newly issued or extant policies on consent for collection, storage, and secondary research using DBS was uniformly endorsed.4,5 We echo the call for action in “There Will Be Blood.” It is imperative for parents, researchers, and policy experts to work together to craft policies which fundamentally improve the consent process including permission to use archived DBS in research. Surely the glimmer of pre-symptomatic diagnosis of childhood cancer should bring all groups together quickly to address the ethical gaps identified in “There will be Blood.”