CCHC Releases New Report:
NEWBORN GENETIC SCREENING: The New Eugenics?
State genetic registries, State warehousing of newborn DNA, and the published concerns of professionals underscore the pressing need for informed parent consent requirements for all facets of newborn genetic screening.
Minneapolis/Saint Paul – The Citizens' Council on Health Care has released a new report that demonstrates evidence and concerns about the extension of eugenics into State newborn screening programs. Today, many States are expanding testing, creating State genetic registries and using newborn blood and DNA to develop new tests for more comprehensive genomic screening of newborns at birth.
"To protect every American's right to self-determination, genetic privacy, and DNA property rights, it is time to require informed written parent consent for all facets of the newborn genetic screening program, including storage and use of genetic test results and newborn DNA," said Twila Brase, president of Citizens' Council on Health Care, and author of the report.
Most States do not require parent consent for newborn genetic testing or for government retention of newborn genetic test results and baby DNA. Some States have now begun to retain each baby's test results and DNA indefinitely for research. Most parents have no idea that government is doing the testing or retaining the data and DNA.
The new CCHC report begins with two quotes, the first from a December 2008 report, The Changing Moral Focus of Newborn Screening: An Ethical Analysis by The President's Council on Bioethics and the second from Frederick Osborn, the former president of the American Eugenics Society, who wrote in 1946:
“Population, genetics, psychology, are the three sciences to which the eugenist must look for the factual material on which to build an acceptable philosophy of eugenics and to develop and defend practical eugenics proposals" (taken from War Against the Weak, New York Times-besting selling author, Edwin Black).
"It is important for policymakers to look beyond the current newborn screening programs which test infants for only 21 to 60-some rare genetic conditions. Supporters of newborn screening appear to be planning for full genomic scans on every baby at birth,"said Brase.
Twila Brase, President
Phone: 651-646-8935 (office)