A long standing safety measure for newborns – the heelprick blood tests taken at birth – is facing ethical attack. These blood tests screen for a list of devastating diseases, which is inarguably in the child’s, and its parents’, best interest. The problem arises from the fact that some states have been storing them for years. Scientists consider these samples a treasure – allowing them both to improve newborn screening and to study important issues in children’s health like which toxins can harm a fetus’ developing heart or which genes trigger childhood cancers.
Unfortunately, parents are rarely asked to consent to such research. Most don’t even know that it occurs. Naturally, this is raising privacy concerns that are putting one of public health’s most successful programs in jeopardy. Texas is on the verge of throwing away blood samples from more than five million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota. Michigan has moved four million leftover blood spots into a new “BioTrust for Health,” planning to educate their citizens about the research potential and make it clear that families have the right to opt out.
The federal government hopes to have guidelines by Spring on how to assure all babies get the tests they need and parents are given plenty of opportunity to know what is done with their child’s sample. Newborn screening has been happening since the 1960’s and today every child is meant to be screened for at least 29 rare genetic disorders in hopes of catching the ones who need early treatment to avoid brain damage or death. Severe combined immune deficiency, or “bubble boy disease” has been recently added to the list. The program catches about 5,000 babies a year in need of treatment.
