Skip to main content

Newborn screening revisited

Longtime readers may remember the topic of Newborn Screening...the blood stick they do for testing soon after birth where the sample is frequently saved...and my inquiring into my state's policies on saving the sample. I'm a big fan of informed consent and giving parents the option to refuse, destroy, or save private medical information and specimens.

I'd even pointed to MN a couple years ago as a great example of giving parents this option via MN Dept of Health forms. Well, update, new laws in MN actually call for all specimens to be destroyed. No opt-out because it is the default. Now, it is "opt-in" requiring parents to formally request specimens and test results be saved. Bravo! The state also makes clear that parents have a right--risky but still a right--to not have their children tested at all.

Yesterday, curiously, I got a letter from the Mayo Clinic--following MN law--requiring they give patients the option to refuse having medical records used for research. Which is interesting given the new opt-out default status for newborns. Unlike the Newborn Screening, the medical records policy has them trying to contact you twice with the default position being your permission to use your private medical information if you do not respond.

While I greatly appreciate the effort to inform patients and allow us to consent--or not--to using our private information for science, I sincerely hope the law follows the Newborn Screening policy and changes to a default of opt-out.

It's better for everybody and gives people the assumption of privacy. Granted, that privacy is somewhat suspect in an internet age. But we do still have the right to privacy, afterall.

So I sent back my form with the box checked No. It's a good idea, but not quite perfect yet.

Minnesota Newborn Screening Parent Options

Article from Nature last year discussion Newborn Screening

Comments

  1. I strongly believe in the newborn screening test and I believe in educating parents about all procedures done to their child as well. I think that consent needs to be obtained from parents to use their child's specimen for testing. I do believe that once parents are educated about the benefits of the research behind the testing more will consent than we probably could imagine.

    ReplyDelete
  2. For my kids, so much was going on in the hospital (esp my preemie/NICU daughter) that a lot of "routine" stuff isn't discussed or you're not given options here. The staff for my son was a little better about it (diff hospital)...my daughter, it was much more "here's what we did, ok?" That said, my concern has never been the actual testing though I want other parents to have the option. I've always had more of an issue with the samples and info being stored for decades without parents even knowing somebody has it. Some people say having that info years later really helped them, medically, but my guess is few parents know what is being down with that blood stick after it's taken.

    ReplyDelete
  3. I whole heartedly agree that :informed consent" is the way to go... I guess what I wish could be improved is the explanation of newborn screening to new parents... like you say..few parents know what is being done with the blood stick after it is taken... I believe even LESS know what newbornscreening is and what it is done for and that it truely can save lives...
    I wish I KNEW (at the time of both my child's births) that my state (TX) only screened for a fraction of the disorders that were recommended at the national level...and I wish I knew I had the option for suppmental screening..for the health of my child...

    maybe if I had known that...we would not been on this diagnostic medical journey for the last 3 years...

    http://babyfoodsteps.wordpress.com/2012/03/07/what-is-newborn-screening/

    thank you for your post... and raising awareness about newbornscreening and INFORMED CONSENT! :)

    ReplyDelete

Post a Comment