Inclusion of Children in Precision Medicine Initiative is Vital

Leading child health organizations agree children must be included in initiative from its outset

Washington, District of Columbia | Wednesday, September 2, 2015

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Over 30 organizations, led by the March of Dimes and the American Academy of Pediatrics, are calling upon the co-chairs of the Precision Medicine Initiative’s Working Group to include children in the Precision Medicine Initiative (PMI) cohort from its outset, and to ensure that research questions related to preconception, perinatal, and pediatric health from infancy through adolescence are an early focus of the PMI.

“We urge you in the strongest possible terms to ensure that children are not denied the opportunity to participate in and benefit from this historic initiative,” the letter from 33 leading maternal and child health organizations states. ”Our organizations hold out great hope for the PMI’s potential to galvanize critical advances in perinatal and pediatric research.”

The White House has proposed establishment of a Precision Medicine Initiative, one major component of which would be the establishment of a voluntary study cohort of at least one million people. To date, no decisions have been announced as to whether children would be included in this research cohort. The letter argues that inclusion of children is essential to understanding and improving their health.

“A wide range of child health issues would be candidates for study, from the maternal health during pregnancy to childhood wellness to rare diseases like pediatric cancers,” the letter continues. “In addition, childhood experiences set the basis for adult health, meaning that the examination of child health will undoubtedly yield important insights for promoting adult health and preventing disease. Of particular note, the study of perinatal and child health would offer the opportunity to obtain results much more quickly than many other issues, given the relatively short timeframes associated with pregnancy, birth outcomes, and early childhood health.”

Including children from the outset of the PMI would ensure that the cohort and its supporting frameworks are structured to accommodate their unique needs, such as recording parental consent, adapting data collection techniques with age, and involving perinatal and pediatric experts in the development of study questions. The letter acknowledges these issues and adds that they “do not pose insurmountable obstacles to children’s participation in the PMI.”

In the coming weeks, the PMI Working Group is expected to release recommendations for the structure of key PMI components, including the research cohort. The full letter is available online here. Organizations signing onto the letter are: American Academy of Pediatrics, Academic Pediatric Association, AIDS Alliance for Women, Infants, Children, Youth & Families, American Congress of Obstetricians and Gynecologists, American Pediatric Society, American Psychological Association, American Society of Pediatric Nephrology, Association for Medical School Pediatric Department Chairs, Association of Maternal & Child Health Programs, Association of Population Centers, Association of State & Territorial Health Officials, Association of Women's Health, Obstetric and Neonatal Nurses, Child Neurology Society, Easter Seals, Epilepsy Foundation, First Focus, Global Genes, Kids v Cancer, Little Miss Hannah Foundation, March of Dimes, the National Alliance to Advance Adolescent Health, National Association of Pediatric Nurse Practitioners, National Organization for Rare Disorders, National Tay-Sachs & Allied Diseases Association, Inc., Nemours Children’s Health System, NGLY1.org, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, Osteogenesis Imperfecta Foundation, Pediatric Policy Council, Population Association of America, Saving Case & Friends, Inc., Society for Maternal-Fetal Medicine, Society for Pediatric Research, and Society for the Study of Reproduction.

About the American Academy of Pediatrics
The American Academy of Pediatrics is an organization of 64,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit aap.org and follow us on Twitter @AmerAcadPeds.

About March of Dimes

March of Dimes leads the fight for the health of all moms and babies. We support research, lead programs and provide education and advocacy so that every baby can have the best possible start. Building on a successful 80-year legacy of impact and innovation, we empower every mom and every family.

Visit marchofdimes.org or nacersano.org for more information. Visit shareyourstory.org for comfort and support. Find us on Facebook and follow us on Instagram and Twitter.