In early May, Minnesota Governor Mark Dayton signed a bill into law reauthorizing the collection of newborn blood samples . The bill’s passage reverses a 2011 ruling by the Minnesota State Supreme Court that collecting blood samples of newborns violated the state’s genetic privacy regulations.
The blood is collected in order to analyze infant DNA for congenital and genetic diseases; supporters argue that it enables researchers to create new tests and provide early diagnosis for a variety of disorders. However, critics argue that it violates privacy rights, particularly when the samples are collected without parental consent. “It’s clearly valuable to the government, but they couldn’t do that with your coat or your cat,” said Twila Brase, President of the Citizens’ Council for Health Freedom in St Paul, Minnesota .
In 2009, several families sued the state, claiming that they never consented for the collection of their babies’ blood. In 2011, the Minnesota Supreme Court ruled that the state could not collect such samples without consent, and all previously collected blood samples were destroyed. The new law will go into effect on August 1, 2014 and will permit scientists to rebuild their DNA sample databases.
In an attempt to assuage privacy concerns, the law allows parents to opt-out and refuse the collection of their children’s genetic information. “This very welcome bill is all about giving freedom back to parents to make decisions for their child,” said Dr. Mark Schleiss, a virologist at the University of Minnesota . “This bill positions Minnesota to save as many lives as possible while upholding parents’ rights to refuse testing, request destruction of test results, or both,” said Dr. Robert M. Jacobson, president of the Minnesota Chapter of the American Academy of Pediatrics .
Yet others, such as Chuck Samuelson, Executive Director of the Minnesota American Civil Liberties Union, argue that the practice should be opt-in rather than opt-out . Additionally, Brase states that parents may not be adequately informed about the procedure, and may object to particular kinds of research for which their infant’s blood will be used .
This article is part of the Spring 2014 issue of Professional Ethics Report (PER). PER, which has been in publication since 1988, reports on news and events, programs and activities, and resources related to professional ethics issues, with a particular focus on those professions whose members are engaged in scientific research and its applications.