Debate in U.S. over newborn blood samples

After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus' developing heart or which genes trigger childhood cancers.

But seldom are parents asked to consent to such research ─ most probably do not know it occurs ─ raising privacy concerns that are shaking up one of public health's most successful programs. Texas is poised to throw away blood samples from more than 5 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 just moved 4 million leftover blood spots into a new “BioTrust for Health,” planning a public education campaign about the research potential and how families can opt out.

Advisers to the U.S. government hope to have national recommendations by in two months on how to assure all babies still get their newborn tests while allowing parents more say in what happens next.

Newborn screening is not new. It began in the 1960s, and today every baby is supposed to be tested for at least 29 rare genetic diseases in hopes of catching the fraction who need early treatment to help avoid brain damage or death. Now being added to the list: Bubble-boy disease, formally known as SCID for severe combined immune deficiency.

The program catches about 5,000 babies a year in need of treatment.

Because newborn screening is mandatory, only a handful of states provide much upfront parent education. Leftover spots mainly are used for double-checking that newborn tests are accurate. Sometimes, families ask geneticists to study them after a child's death from a disease doctors can't immediately diagnose.

But as scientists sought to use the leftovers for broader research, suddenly the informing of parents ─ especially about long-stored spots ─ became an issue. While blood spots are stripped of identifying information before being handed over to scientists, people generally need to consent to participate in research.

To scientists who pore through dusty warehouses in search of blood samples stored by health department ID codes ─ not the babies' names ─ privacy concerns are exaggerated.

Bioethicist Aaron Goldenberg of Case Western Reserve University studied parent attitudes, and found three-quarters would be willing to have their baby's leftover blood spot used for research if they were asked first. But they generally oppose that research without consent.

The balancing act for states, he says, is separating the two issues — lifesaving newborn screening and other use of the leftover blood — in the little time available to educate parents.

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