by Dr. Hsien-Hsien Lei
Posted July 30, 2007 in DNA Testing, DNA and the Law
Every year, about 5,000 infants in the U.S. are diagnosed with a congenital disorder while an additional 1,000 children go undetected because genetic screening isnâ€™t routine or incomplete in their state. The American Academy of Pediatrics, March of Dimes, and American College of Medical Genetics believe that all newborns should be screened for 29 genetic disorders. In the US, the comprehensiveness of newborn genetic screening varies from state to state.
Genetic testing of newborns in Minnesota has been under much debate. Laws stipulate that blood samples cannot be used for research or any other reason not related to disease testing unless the parents sign consent forms. Genetic privacy advocates believe that blood samples should not be taken at all unless parents â€œopt-in.” But there’s a problem with requiring consent – if people are not automatically included, screening rates are proven to be lower; Minnesota is opt-out and tests more than 99.5% of all newborns, Maryland is opt-in and tests less than 97%.
The Citizens Council on Health Care has been fighting the Minnesota state government to have newborn blood samples destroyed after disease screening (pdf) unless parents give consent for the samples to be used for research. But while this might appease genetic privacy advocates at this point in time, they should think ahead. Once whole genome sequencing is readily available to each individual, destroying blood samples will be too late since DNA analysis can be performed quickly, if not immediately.
Craig Westover, columnist at the St. Paul Pioneer Press, weighs individual privacy rights against public health with respect to newborn genetic screening. He believes that governments who “coerce” people to participate in genetic screening are violating people’s personal privacy.
At stake is more than a theoretical “slippery slope” argument about the dangers of government collection of personal data. It’s a classic case of the seen versus the unseen. The visible results of genetic testing are measured in children’s lives. The unseen, unintended consequences are individual psychological, social and financial risks including social stigma, insurance and employment discrimination. Given individual concerns, detailed counseling, informed consent and confidentiality should be key elements of any genetic testing program.
Despite acknowledging the benefits of newborn genetic screening, Westover concludes that the Minnesota Health Department has not proven that the state should be performing infant genetic screening let alone collecting and storing individual DNA.
My question is: If not the government, then who? Who will be making sure that our children receive the medical care they need and deserve from the time they’re born?
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