Baby DNA Bill
By Mitch Berg
Interested in opposing the Baby DNA bill? Check out the following:
And make sure you call your state reps, senators, and of course Governor Pawlenty. Tell ’em you don’t want the state building a genetic database without our informed consent.
April 4th, 2009 at 3:49 pm
It is appalling that a DNA data base is being compiled without consent. The potential uses for DNA information is extensive, and therefore the potential for abuse of the information is equally vast.
Based on the information provided on Mitch’s broadcast this afternoon (yes – I was one of the many listeners) there appear to be some very vested researchers promoting this.
As part of making an informed decision about this bill, it would be useful to know more about the intended research, including what kinds of provisions there may be for guaranteeing the privacy of the data collected, and of course, the purposes of the proposed research.
However worthwhile the research may be, it is never ever ever acceptable to do that research without the consent of the donor of material used, however minute the amount of biological material involved.
If this research is so important and potentially helpful to the world, then it should be possible to make it easier for people willingly to participate by informing the public so they can make a considered choice to donate – or NOT donate. As a self-professed science geek, particularly the bio-sciences, I hope the information about this bill is more widely disseminated. This is a very serious ethical concern, and a very important issue for the general public to know about.
Excellent public service to have your guest with this information on your show. Two hours today well spent, and I am very much looking forward to the guest next week as well.
April 5th, 2009 at 11:03 am
Dog Gone said:
“it would be useful to know more about the intended research”
Indeed! If they can’t tell you exactly what they will do with the data, and exactly how they plan to manage it, are they really qualified stewards of the data in the first place? I say no.
April 6th, 2009 at 9:54 am
The speaker on Mitch’s broadcast seemd to indicate there were multiple groups who were or would be doing research from the collected material.
The only entity specifically NAMED was the Mayo Clinic, who have been consistently ethical in their research practices over their long and prestigious existence. Which caused me to be more than a little surprised that they might be doing research on samples unethically and possibly even illegally collected. It’s not like them to do that…. and the more I contemplated that, the more this troubled me about hearing only one side of this issue.
After musing over this question in my mind the last day or so, I think it would be a wise, fair and even handed move on the part of Mitch and Ed to contact the Mayo for their side of this allegation, and to provide their position on this kind of DNA collection. It would also be nice to give them an opportunity to provide information on their research project(s) and what they hope to accomplish.
Having called for participation, apparently in opposition, it would behove these smart gentlemen to use their super powers of persuasion for good (written with a smile firmly in place), and make sure that this topic is properly investigated before advocating action for OR against.
April 6th, 2009 at 12:45 pm
I didn’t listen to the broadcast this Saturday but I did manage to find my comments from April 2008, the last time Mitch covered this issue, and here’s what I wrote back then:
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.
As I said, I didn’t catch the broadcast this Saturday but barring any substantial differences between the ‘08 Bill and the ’09 Bill, I don’t see any reason to get particularly worked up about this one either.
On a side note, while I support patient privacy and work with patient informed consents as part of my day job, I’m a bit concerned about some of the tactics employed by some of the people on our side of the aisle. It appears to me that the Citizens Committee on Health Care could be in danger of becoming what happened to the Maple River Education Coalition – a group of concerned people on the right side of the issue but who ended up having their message high-jacked by conspiracy mongers and ultimately ended up losing on the larger issue.
April 6th, 2009 at 1:04 pm
The way I understand it, Dog Gone, is that all hospitals around the state collect infant blood samples at the direction of the commissioner of health (https://www.revisor.leg.state.mn.us/statutes/?id=144.125&year=2008). Even if Mayo is populated with angels, the samples are still in existence and Mayo isn’t the only place that could/would potentially look at them.
That said, it may be very interesting to get a non-PR person from Mayo to answer some questions like:
“what sort of research would or could be done?”
“are there areas of research that would or should be avoided?”
“what sort of privacy/security precautions are taken with this sort of research data, and can they be undone?”
April 6th, 2009 at 1:09 pm
thorleywinston said:
“there is probably some pretty good value to public health in gathering this sort of information”
The information? Yes. The indefinite storage of samples? Big assumption. If there IS “some pretty good value” to that, it should be easy to spell it out and debate the positives and negatives, correct?
April 6th, 2009 at 2:40 pm
The indefinite storage of samples? Big assumption.
Not really, the actual proposed law pretty clearly retains the power of a parent or guardian who doesn’t opt out of the testing to stipulate up front that the sample and record have to be destroyed within two years of the testing or to later send a request to have them destroyed within 45 of receipt of your request.
Assuming that what was true for the ’08 legislation was true for the ’09 legislation, I don’t think that this objection is very credible.
April 6th, 2009 at 2:58 pm
Actually Troy, I just finished reading the new legislation and not only does it preserve the same rights that parents and guardians would have retained in the ’08 legislation, it also states that “[u]nless a parent or legal guardian has given written informed consent, the department must destroy all newborn screening blood samples within 25 months of the month of birth.”
So whoever told you that the bill provides for the “indefinite storage of samples” either didn’t read the legislation or flat out lied to you.
https://www.revisor.leg.state.mn.us/bin/bldbill.php?bill=H1341.1.html&session=ls86
April 7th, 2009 at 11:38 am
I don’t know, thorleywinston, I’m just going by what my sources tell me. They say the Minnesota Department of Health is being sued now for violating the current enacted legislation. I also know there is more than one bill in circulation pertaining to the topic. This one:
https://www.revisor.leg.state.mn.us/bin/bldbill.php?bill=S1478.1.html&session=ls86
“2.34 (b) The parent or legal guardian of an infant otherwise subject to testing under this
2.35section may object to any of the following:
2.36 (1) the testing itself;
3.1 (2) the maintenance of the infant’s blood samples and test result records for a period
3.2longer than 24 months; and
3.3 (3) the use of the infant’s blood samples and test result records for public health
3.4studies and research.”
makes me think that ‘assuming the best’ may make your infant a research subject unless you opt out. Based on my experience, I just don’t think that’s cool. Obviously you think differently.
If there is an obvious public good to keeping the data by default, I think the people should require the government to give a sales pitch at least, and not just trust that good things will happen.
April 9th, 2009 at 10:34 am
Troy says:
“Even if Mayo is populated with angels, the samples are still in existence and Mayo isn’t the only place that could/would potentially look at them.”
I wouldn’t say that the Mayo is populated with angles Troy. Rather, they have some of the best oversight and bioethical review of any comparable institution in this country or worldwide. They are arguably the gold standard for quality review. Not only would I be expecting them to rigorously be examining the ethics of such a collection, I’m wondering what kind of research they would do on something collected by others outside of their direct research. That suggests to me significant possible problems with peer review of anything they publish from that research.
Don’t get me wrong, I hugely support informed consent. But there is something seriously missing in what was represented. Enough that it is a really good idea to investigate the other side of this, either from the Mayo, or from the Dept. of Health; preferably both — and to publicize same.