“Newborn Screening for Nontreatable Disorders”
MAY 2, 2008
1:00 PM - 4:30 PM
Newborn screening began in the 1960’s after physician Robert Guthrie developed a test for PKU, a disorder that can be treated effectively if detected soon after birth. Massachusetts adopted newborn screening on a voluntary basis in 1962, but after President Kennedy’s Advisory Committee on Mental Retardation recommended mandatory screening, states began to require it, and it is now compulsory in all states.
Historically, newborn screening has been done for conditions which, if not treated immediately or at least early in life, can be serious or fatal. But the development of faster and cheaper technologies enable screening for far greater numbers of disorders and now, public health experts are calling for newborns to be screened for non-treatable disorders -- disorders that either are not treatable at all or that can be treated successfully later in life when they show up. Advocates argue it could spare families years of uncertainty once symptoms emerged; alert them to be on the watch for discoveries of treatments; provide children with adjunctive interventions; and facilitate participation in research. But there is a further rationale they offer that is more controversial: it can cause parents to avoid having another child with the same disorder.
This rationale is troubling in that it has eugenic overtones. Screening is mandatory, and the state may impose it on parents over their objection. The Nebraska Supreme Court has even held that parents may not object to screening on religious grounds. Nontreatable disorders would be included in part to discourage parents from giving birth to additional children who might become a burden on society. This is the same excuse that was given in the past to justify forced sterilization programs and other ethically unacceptable practices designed to rid the world of undesirable people.
Donald B. Bailey
RTI (Research Triangle Institute) International
Jeffrey R. Botkin, MD, MPH
Professor of Pediatrics
University of Utah School of Medicine
Ellen W. Clayton, MD, JD
Rosalind E. Franklin Professor
of Genetics and Health Policy
R. Rodney Howell, MD
Professor of Pediatrics
Miller School of Medicine
University of Miami, Florida
Marvin Natowicz, MD, PhD
Vice Chairman, Genomic Medicine Institute
Open to the public at no cost. There will be a $100 fee for CLE for lawyers who attend.
Event is NOT AT the law school – LOCATION:
Whitehall Room, Renaissance Hotel, 24 Public Square, Cleveland, OH 44113
View a detailed agenda