DFL: “Privacy, Schmivacy”
By Mitch Berg
Quick – someone find us a penumbra.
Twila Brase – who happens to be a neighbor of mine in District 66B – is crusading against one of the great overreaches of Minnesota government power out there – the State’s (actually the DFL establishment’s) push to take childrens’ DNA information, without parental permission, to build a huge genetic database of Minnesota (for now) children.
This would change existing law, as Twila writes in a op-ed in today’s Strib:
The 2006 Minnesota Genetic Privacy Law does what all of us want it to do. It requires written informed consent prior to the collection, storage, use, or dissemination of our private genetic information by government and others.
Specifically, the law states that our genetic information may only be collected and used if we give our written informed consent; it may be stored only for as long as we consent; and it may only be shared with others, including researchers and pharmaceutical companies, with our consent. The consent to allow sharing for specific purposes expires in a year and must be signed and dated.
This is all good news — unless Senate File 3138 becomes law.
And there’s the rub:
This legislation would allow the Minnesota Department of Health (MDH) to exempt the collection, storage, use and sharing of newborn DNA from the informed consent requirements of the genetic privacy law. Without informed consent, MDH would be allowed to contract with hospitals statewide to prick the heel of newborns, use and analyze the baby’s DNA into adulthood, and give the DNA-filled blood spots to researchers and others.
If this legislation passes, the informed consent protections of today’s genetic privacy law will not protect any baby born after July 1, 1997 — the day health officials began building a government “DNA warehouse” for the purpose of genetic research. On that day, without legal authority or parent consent, MDH began keeping baby blood and storing it indefinitely.
“But it’s only government! What could the problem be? Aren’t you happy to give your privacy for a Better Minnesota?”
Today, according to health officials, the DNA of more than 780,000 children has been filed and claimed as state government property. Their parents have no idea…Senate File 3138 violates parent rights, privacy rights, patient rights and DNA property rights. Citizens young and old have the right to informed consent and genetic privacy. They also have the right to not be research subjects, to not incriminate themselves through their genetic codes, and to be free from involuntary genetic profiling and genetic registration.
If Pawlenty fails to use his influence or his veto pen to protect the genetic privacy rights of citizens, individual DNA and private genetic codes will become government property. What will the governor do?
We don’t know.
And it’s up to all of you to help us figure that out. Call the Governor. Get him to veto this atrocity. And call your legislator, find out their position, and let yours be known. It makes a difference.
April 29th, 2008 at 2:10 pm
Twila Brase has been a information privacy advocate for some time.
http://www.cchconline.org/
http://www.youtube.com/watch?v=_mD5Trpd4d8
Calling the governors office (651-296-3391) might be a very good idea if you care about this sort of thing. Or writing a letter:
Office of the Governor
130 State Capitol
75 Rev. Dr. Martin Luther King Jr. Blvd.
St. Paul, MN 55155
is good too.
April 29th, 2008 at 3:20 pm
Okay what exactly is the rationale behind the proposed legislation that would exempt newborns (by which I assume they meant a parent or guardian of the newborn) from the informed consent provision?
I doubt that they have some nefarious motive but I would like to hear what their argument is for why they want this exemption and think it’s a good idea.
April 29th, 2008 at 4:13 pm
I found the text of the legislation:
https://www.revisor.leg.state.mn.us/bin/bldbill.php?bill=S3138.2.html&session=ls85
Reading the changes in total, it looks like the effects of the legislation would be to provide even greater information and flexibility to parents (and now guardians) than existed previously in Minnesota law. And if you do consent (or rather don’t object after being fully notified), you can always change your mind and now you have the flexibility to tailor your consent more narrowly than before.
If I had to guess at the reason for the proposed change from an informed consent to an informed opt out (not an actual term AFAIK), it’s that the authors figure that most parents wouldn’t object to having their kids tested for heritable and congenital disorders and can see the value to public health in gathering information on this data.
I don’t really see this as a big first principles issue because the difference between requiring informed consent versus requiring that parents (and now guardians) be notified beforehand and able to object, isn’t really that great to get me excited. It seems to me that there is probably some pretty good value to public health in gathering this sort of information and going with an informed consent would greatly increase the administrative costs. So long as people are able to opt out and have to be notified beforehand, I don’t see enough to get worked up about.
April 29th, 2008 at 4:23 pm
Mitch,
I firmly oppose this (without the parent’s permission), for the same reason I oppose national ID’s. It’s information and proof of identity, that a citizen isn’t obligated to provide (to vote, to walk the streets, to cross state boundaries) etc.. It’s the same reason I oppose ‘sniffers’ and cameras.. and you should too.
However, as i recall, you support national ID’s, how would you reconcile this? You have a RIGHT to vote, fundamental, unquestioned, you have NO obligation to do anything other than help the state (which really has the obligation) assure you aren’t voting fraudulently. A state and/or national ID isn’t necessary for that – so call the governor, help us end the atrocity that is the requirement to prove identity to vote. It’s no less an unecessary intrusion on identity, on privacy of conduct, than is this.
April 29th, 2008 at 9:08 pm
thorleywinston said:
“It seems to me that there is probably some pretty good value to public health in gathering this sort of information”
I’d prefer the value be spelled out, myself. Even some hypothetical instances would be nice. “other population-based health studies” is broad enough for almost anything, and as nice as I think public health employees are (and I do), I also know they are human. If they have a good reason for this, let them tell you what it is first.
April 29th, 2008 at 10:53 pm
Once the genie is out of the bottle it’s hard to get it back in.
Insurance co’s would love to get there hands on this information. If the gov’t takes over healthcare whatever agency is in charge of rationing healthcare would love to see it as well. And there is always the chance that some researcher will claim a significant link between a genetic marker & criminal behaviour, or just some socially undesirable behaviour, and the
victimcitizen will receive unearned attention from the ‘authorities’. No appeal, no need for just cause, because it’s a health issue, not a criminal issue.April 29th, 2008 at 11:01 pm
I’d prefer the value be spelled out, myself. Even some hypothetical instances would be nice.
Here you go:
http://www.health.state.mn.us./divs/fh/mcshn/nbshome.htm
http://kidshealth.org/parent/system/medical/newborn_screening_tests.html
http://www.marchofdimes.com/professionals/14332_1200.asp
I won’t clog up Mitch’s site by going through all of the information they provide on the value of these tests but suffice to say – if you catch certain genetically-transmitted disorders like PKU early enough (and the most opportune time for detection is when the newborn is in the hospital), you can inform the parents and prevent or at least mitigate some of the damage to the child. That means a kid might not have to die early or live with mental retardation or a severe disability which is good for both them and those of us who might otherwise have to financially support them.
Again, when I look at what the actual bill says, it doesn’t strike me as being either unreasonable or a violation of anyone’s liberty. If anything it requires that parents be provided more information than before and protects the right to say “no” while reducing the burden on testing that could prevent some serious (and expensive) medical problems.
April 30th, 2008 at 11:50 am
”I’d prefer the value be spelled out, myself. Even some hypothetical instances would be nice.”
Here you go:
http://www.health.state.mn.us./divs/fh/mcshn/nbshome.htm
http://kidshealth.org/parent/system/medical/newborn_screening_tests.html
http://www.marchofdimes.com/professionals/14332_1200.asp
I won’t clog up Mitch’s site by going through all of the information they provide on the value of these tests but suffice to say – if you catch certain genetically-transmitted disorders like PKU early enough (and the most opportune time for detection is when the newborn is in the hospital), you can inform the parents and prevent or at least mitigate some of the damage to the child. That means a kid might not have to die early or live with mental retardation or a severe disability which is good for both them and those of us who might otherwise have to financially support them.
Again, when I look at what the actual bill says, it doesn’t strike me as being either unreasonable or a violation of anyone’s liberty. If anything it requires that parents be provided more information than before and continues to protect their right to say “no” while reducing the burden on testing that could prevent some serious (and expensive) medical problems.
April 30th, 2008 at 4:04 pm
Perhaps I am not being clear.
Do I question the value of the tests? No.
Do I question the keeping the blood samples indefinitely by default and easing the burden on government to collect and manage what is private data? Yes.