Does the Newborn Heel Prick Test Pose Privacy Concerns?

ByAnisa Arsenault
Associate Editor
Updated
Mar 2017
Hero Image
Photo: Bourn Hall Clinic

Right after birth, babies quickly have their heels pricked. A few drops of blood are collected on a card with your child’s name and taken to the lab to be tested for approximately 40 genetic diseases.

But what happens next?

That card typically goes into long-term storage, where it may later be retrieved and given to medical professionals — without baby’s name — for research purposes. But parents have no idea that this is happening.

That changes this week, when a federal act goes into effect, requiring federally-funded researchers using these blood samples to get parental consent beforehand. And California has proposed a bill taking it one step further, requiring parental permission whether research is federally or privately funded.

The concern is one of privacy. The first version of the bill allowed parents to opt out of the screening entirely. But the medical community fears this will create unnecessary alarm around a test that saves lives and identifies 3,400 infants with genetic diseases each year. The workaround? Create a consent form, outlining the potential research uses of blood spot cards, that includes a box to opt in and a box for more information.

Researchers fear privacy concerns are overblown and that this “opt out” option will impede California’s medical research.

(via BuzzFeed)

Related Video

The SSA Has Finally Announced the Most Popular Baby Names of 2019

Nehal Aggarwal
Associate Editor
Published
09/16/2020

San Francisco Is Giving $1000 to Pregnant Black and Pacific Islander Women

Nehal Aggarwal
Associate Editor
Published
09/16/2020

Loss of a Pet Can Greatly Affect Young Kids’ Mental Health, Study Says

Nehal Aggarwal
Associate Editor
Published
09/15/2020

Girlfriend Collective Just Launched a New Maternity Collection

Nehal Aggarwal
Associate Editor
Published
09/15/2020

Here’s Everything You Need to Know About Walmart Plus

Nehal Aggarwal
Associate Editor
Published
09/15/2020