Parents Concerned Over Newborn Blood Used in Research

http://www.msnbc.msn.com/id/35301574/ns/health-pregnancy/

The heelprick of blood taken from each newborn in the U.S. is now facing an ethical dilemma. The blood taken is used to test for at least 29 rare genetic diseases in the hopes of catching the diseases that need early treatment. The program catches about 5,000 babies per year who are in need of treatment.

In some states, the blood that is leftover after this screening is being stored for years, and used 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.

The blood spots are stripped of identifying information before being given to scientists, so there is no way to know anything about the person just by studying their DNA. However, people generally need to consent to participate in research.

Parents are seldom asked for their consent for this research. Many parents are not even aware of it. This has raised privacy concerns among many parents. Advisors to the U.S. government hope to have national recommendations in 2 months on how to assure all babies still get their newborn tests while allowing parents more say in what happens next.