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Friday, May 13, 2016

Ind. Decisions - "Storing babies' blood samples pits privacy versus science"

The April 19th Court of Appeals ruling in A.B.Doe v. State Health Commissioner (ILB summary here), which was the subject of a long April 22nd story by Deborah Hamilton in CharismaNews ("Breaking News. Spiritual Perspective"), headed "Court Ruling Strikes a Blow Against the Protection of Baby DNA," is today featured in another story, this one by Rick Callahan of the AP. A few quotes from his long, comprehensive report:

Ellie is among some 4 million newborns in the United States who will have blood drawn this year to screen them for serious inherited diseases such as sickle cell anemia, which can cause organ damage, and the metabolic disease phenylketonuria, or PKU, which can lead to mental disabilities. * * *

But what happens to the dried blood samples on those cards after the testing that's mandatory in all 50 states is completed has sparked legal battles in some states. Minnesota and Texas have destroyed some 6.4 million samples following lawsuits. And in Indiana, the parents of a 9-year-old suburban Indianapolis girl are seeking the same for up to 2.5 million samples collected over two decades and stored in 600 boxes at a state warehouse.

"Her parents' main concern is that down the road who knows what could happen with these samples?" said Jonathan Little, an attorney for parents of the girl, identified in court documents only as A.B. Doe.

The case poses a dilemma: How can society balance the right to privacy with the needs of science and medical research?

The Indiana lawsuit was dismissed by a trial court last year and in April by the Indiana Court of Appeals. Both courts found the girl was in no imminent danger of suffering harm from the state holding onto her sample. Her attorneys plan to appeal to the Indiana Supreme Court next week.

In an era of increasingly sophisticated genetic analysis, some privacy advocates fear insurance companies could access blood samples and charge higher premiums for people found to have a genetic predisposition to diseases such as Alzheimer's. * * *

Attorneys for Indiana say the 2.5 million blood samples at the heart of the pending lawsuit won't be used for medical research, but argue the state has an interest in holding onto them, such as for evidence in missing persons or medical malpractice cases.

Posted by Marcia Oddi on May 13, 2016 06:13 PM
Posted to Ind. App.Ct. Decisions