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
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