Parents win key ruling in Michigan newborn blood dispute

Sep 16, 2022, 9:03 AM | Updated: 2:55 pm
FILE - This July 2022 photo shows a lab in Lansing, Mich., where the state health department tests ...

FILE - This July 2022 photo shows a lab in Lansing, Mich., where the state health department tests blood from newborns for more than 50 rare diseases. A judge has found key parts of Michigan’s newborn blood-testing program unconstitutional in a challenge by four parents who raised concerns about how leftover samples are used long after screening for rare diseases. (Joey Cappelletti/Report for America via AP)

(Joey Cappelletti/Report for America via AP)

DETROIT (AP) — A judge has found key parts of Michigan’s newborn blood-testing program unconstitutional in a challenge by four parents who raised concerns about how leftover samples are used long after screening for rare diseases.

The lawsuit is not a class action. But the decision this week is likely to have an impact on how the state maintains millions of dried blood spots and makes them available for outside research.

Research with newborn blood spots occurs in other states, too.

“Michigan undoubtedly has some level of interest in detecting rare blood diseases in its infant population,” U.S. District Judge Thomas Ludington said. “But … defendants’ post-testing conduct is not necessary to effectuate that interest because ‘the health of the child is no longer at stake.'”

At the state’s direction, Michigan hospitals routinely prick the heels of newborns to draw blood to check for more than 50 diseases, a longstanding practice across the U.S. Leftover blood spots are sent to the Michigan Neonatal Biobank in Detroit for safekeeping. Scientists can pay a fee to use them for various research projects.

Since 2010, Michigan must have permission from parents to use spots for outside research. But attorney Phil Ellison argued that the program still violates constitutional protections against searches and seizures, and might not be fully understood by parents who are given a form soon after the rigors of childbirth.

Ellison said the consent form and a related brochure are vague, making no reference, for example, to the state collecting fees from scientists for research.

“Indeed, the forms state explicitly that the DBS will be ‘used by the state lab.’ In other words, there is no evidence of plaintiff-parents’ informed consent to sell the DBS,” the judge said in a 32-page opinion, using an acronym for dried blood spots.

Ludington ruled in favor of the four parents on more than a dozen issues, including long-term storage and use of blood spots by private parties. He set some points aside for a future trial.

The judge didn’t come up with a remedy. But he suggested the state could avoid future conflicts by simply creating a detailed form with a series of checkboxes for parents to consider.

“This case isn’t about stopping the newborn screening program,” Ellison told The Associated Press. “It’s to put the scope of participation in the hands of moms and dads as opposed to the government or a government bureaucrat. … Moms and dads have to be fully informed and make intelligent decisions. The current practice doesn’t meet that.”

Despite the judge’s ruling, the state health department said Friday that it’s confident the program complies with state and federal laws.

Earlier this year, at a separate stage of the case, the health department agreed to destroy more than 3 million blood spots stored in Lansing, but millions more remain under state control.

The department has defended the program. It emphasizes that no spots are stored for research unless parents give permission. Spots also can be destroyed upon request, though the number of people who have taken that step is small.

A code — not someone’s name — is attached to blood spots that are stored in Detroit, making threats to privacy during research “very low,” according to the state.

Research with blood spots occurs in other states, including California, New York and Minnesota, where they can be kept for decades.

In 2009, Texas agreed to destroy millions of newborn blood spots that were stored without consent. Spots obtained since 2012 now are destroyed after two years unless Texas parents agree to have them maintained longer for research.

___

Follow Ed White at http://twitter.com/edwritez

Copyright © The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

AP

Ukrainian soldiers sit on an armoured vehicle as they drive on a road between Izium and Lyman in Uk...
Associated Press

Live Updates: Russia-Ukraine War

KYIV, Ukraine — Ukraine’s presidential office says that at least five civilians have been killed and eight have been wounded by the latest Russian shelling. A statement on Wednesday says Russian troops used six Iranian suicide drones to strike the town of Bila Tserkva in the Kyiv region, leaving one person wounded. The strikes were […]
3 hours ago
Associated Press

Lebanese lawmaker demands trapped bank savings

BEIRUT (AP) — A Lebanese parliamentarian on Wednesday entered a bank branch near Beirut, demanding some of her trapped savings to cover medical expenses. Cash-strapped Lebanon in recent weeks has witnessed a surge in depositors storming bank branches to forcefully withdraw their locked savings as the country’s economy continues to spiral. On Tuesday, depositors stormed […]
3 hours ago
European Commission President Ursula von der Leyen speaks during a commission on Russia's escalatio...
Associated Press

Top EU official vows to ‘stress test’ pipelines after leaks

BRUSSELS (AP) — The head of the European Union’s executive arm vowed Wednesday to introduce checks on key EU infrastructure, including energy, after the suspected sabotage of natural-gas pipelines in the Baltic Sea. European Commission President Ursula von der Leyen said the damage last week to the Nord Stream pipelines linking Russia and Germany has […]
3 hours ago
FILE - An Afghan refugee boy carries a bag of mangoes on his shoulder in Karachi, Pakistan, Sunday,...
Associated Press

Amnesty: Creditors should provide debt relief to Sri Lanka

COLOMBO, Sri Lanka (AP) — International creditors should provide debt relief to Sri Lanka to alleviate suffering as its people endure hunger, worsening poverty and shortages of basic supplies, Amnesty International said in a statement Wednesday. For months, Sri Lanka has been in the grip of a dire economic crisis and the country has defaulted […]
3 hours ago
FILE - The logo of the Organization of the Petroleoum Exporting Countries (OPEC) is seen outside of...
Associated Press

OPEC+ weighs large oil cutback to boost sagging prices

FRANKFURT, Germany (AP) — The OPEC+ alliance of oil-exporting countries on Wednesday will debate a potentially large cut in the amount of crude it ships to the global economy — a move that could help Russia weather a looming European ban on oil imports and raise gasoline prices for U.S. drivers just ahead of national […]
3 hours ago
Associated Press

Pakistan’s army chief meets with US defense secretary

ISLAMABAD (AP) — Pakistan’s powerful military chief met Wednesday in Washington with U.S. Defense Secretary Lloyd Austin and other security and government officials, the military said. Qamar Javed Bajwa’s trip to the United States comes weeks before he’s expected to retire after an extended six-year tenure. Although Pakistan has been ruled by the elected civilian […]
3 hours ago

Sponsored Articles

...
Mayo Clinic Orthopedics and Sports Medicine

Why your student-athlete’s physical should be conducted by a sports medicine specialist

Dr. Anastasi from Mayo Clinic Orthopedics and Sports Medicine in Tempe answers some of the most common questions.
...
Dr. Richard Carmona

Great news: Children under 5 can now get COVID-19 vaccine

After more than two years of battle with an invisible killer, we can now vaccinate the youngest among us against COVID-19. This is great news.
(Courtesy Condor)...
Condor Airlines

Condor Airlines shows passion for destinations from Sky Harbor with new-look aircraft

Condor Airlines brings passion to each flight and connects people to their dream destinations throughout the world.
Parents win key ruling in Michigan newborn blood dispute