Newborn blood used in research angers parents

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WASHINGTON - A critical safety net for babies — that heelprick of blood taken from every newborn in the U.S. — is facing an ethics attack.

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 ...

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 ... 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.

... While blood spots are stripped of identifying information before being handed over to scientists, people generally need to consent to participate in research.

... Among their worries: that genetic information about the children could fall into the wrong hands.

... "DNA is your personal signature, and it uniquely identifies us," ...

... 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 ...

Melissa Maimann, Essential Birth Consulting 0400 418 448