Michigan BioTrust

October 8, 2011

Political Theory

I walked in to North Quad the other week to visit a friend (mainly to eat in the dining hall, if you haven’t gone yet you need to go), and I noticed a bulletin board full of paying research opportunities. One in particular, a fairly vague one at that, simply said “Michigan BioTrust Town Hall – $50.” That’s all it had to say. This evening, from 5:30-9:00 PM, I enjoyed free Potbelly’s food, participated in simple surveys and conversations, got a great idea to blog about, and walked out with a $50 bill. It was a good night to say the least.

The meeting was led by a PhD in Biochemistry, and an active participant in a research study designated to not only inform, but also to gather viewpoints from Michiganders on the Michigan BioTrust. To avoid confusion, I’m going to reiterate some background information the same way in which it was presented to us tonight at the meeting. The first organization I’m going to talk about is the Michigan Newborn Screening Program. Founded in 1964 in Massachusetts, it quickly gained acclaim and became mandatory in all 50 states. MNSP is a program required by Michigan law that takes a blood sample of all babies born in Michigan (even home born babies) and tests that sample for rare, yet serious treatable illnesses. Currently, it tests for 49 different biochemical disorders (all of which can be treated if discovered early on, usually through diet) and new disorders are added on to the test every year. If a baby tests positive for any disorders, the parents are contacted immediately to determine how they want to treat their child. As the program further develops, it continues to save countless lives.

Dexter working hard at the lab testing a bloodspot.

The second organization is the Michigan BioTrust for Health, an initiative that works very closely with the Newborn Screening program. Were you born in Michigan between 1984 and 2010? I was. If you answered yes to that question, you currently have your bloodspots stored in the Michigan BioTrust and you didn’t even know it. From 1984 to 2010, the State of Michigan collected blood samples from every newborn without consent from its parents. These bloodspots were tested for illnesses, and then used in countless research studies. In May 2010, the state finally started asking parents for consent to store their child’s bloodspots and to use them for research studies. While collecting these bloodspots seems like a positive idea that only benefits and furthers our understanding of health, it still seems odd that the state was able to do this for so long without consent. According to the state legislature, the Michigan Department of Community Health actually owns these bloodspots, and that, apparently, justifies their actions. Ignoring the fact that they didn’t ask for consent, the Michigan BioTrust seems like a genuinely innocent organization that is only used for good…so why has it been faced with such strong debate?

A nurse extracts 5 bloodspots from a newborn's heel.

If you’re a widespread government agency and you fail to provide full and thorough information, people are simply going to assume you have something to hide. I’m not endorsing the idea that they’re hiding something. I don’t think they are. I think it would’ve just taken too much time and money to get consent from every parent. Nonetheless, people still think this way. However, there are several other concerns associated with the program. We’ll start with the ethical concerns. For one, is the idea itself of having a DNA sample of every single human being unethical in the first place? I personally don’t think so. The DNA is not being used for evil purposes, and it’s not as if the government is secretly regulating our DNA for some weird reason (at least as far as we know). I think, if anything, it’s actually the opposite: it’s not only ethical, it’s necessary. The DNA banks are being used to test for terminal diseases and improve the overall health of human beings. However, we also face the issue of who will be allowed access to the bloodspots for research. This is one of my personal biggest concerns. Should it be limited to professionals? Should students have access to it? What about your everyday, average Joe? I would probably only feel comfortable if professional college graduates had access, or at the very least students under scholarly supervision. Mill might argue that everyone should have access, but I don’t think I would agree; there are certain cases in which I wouldn’t want my bloodspots used in research, which I’ll get to shortly. But would Mill’s arguments even apply here? Is scientific information an issue of “speech?” I think so. Speech should not be taken for it’s literal meaning here. Free speech is meant to include the entirety of sharing any information, whether through your actual voice or a computer or database or whatever it may be. I’m not only curious as to who would be using my bloodspots, however, but what they would actually be used to test. I would be comfortable if my bloodspots were used in aiding research of cancer, diabetes, or other common causes of death. But I’m not sure how comfortable I’d be with some other issues; I was quite surprised and suspicious to hear that these tests can actually be used to determine intelligence, to a degree. I say “to a degree” because we really don’t have any sure way of determining exactly what intelligence is as of yet. In other countries, bloodspots have actually been used in studies that have attempted to place children in schools based on their intellectual ability. Sorting out the dumb from the smart. Is this morally sound? I don’t know. Sure, it would have some benefits, such as providing those who are “capable” with all of the resources they need to succeed. But what about about the kids deemed dumb, the kids who won’t even be given an opportunity to prove themselves? I can guarantee there are plenty of kids who got extremely lucky getting into Michigan. Maybe they didn’t have top ACT scores, the best grades, or the most activities; yet still, the admissions office saw something in them that differentiated them from the other applicants and gave them the chance to come here and accomplish something great. If the government began using our DNA to determine placement, millions of opportunities would be lost and there would also be people undeserving of positions being placed into them simply from a flawed interpretation of one’s intelligence level. Moving on, there is also the issue of anonymity. These bloodspots can always be traced back to the person who they came from. While this may help with studies based on gender, race, location, etc., this also makes me feel a bit uncomfortable personally. I can’t say that I don’t feel just a little suspicious of the government having full access to my DNA at all times; I mean, that’s what criminals are forced to do, right?

There are also a lot of economical issues to consider here. Number one being, who pays for these bloodspots and tests that are required by law? You guessed it! It’s coming right out of your parents tax dollars. And soon, out of yours. It costs approximately $80 per baby and covers the bloodspots, the initial tests, the contacting of the parents, and up to 6 months of the treatment (if tested positive). With all of the constant debate on ways in which our government spends money, I think it should at least be made clear to the American taxpayers that their money is going somewhere in which they didn’t provide consent for, and probably didn’t even know about. Another economical (and ethical) issue at hand is the idea that insurance companies will raise their premiums for children who test positive for diseases. Michigan passed a law stating that insurance companies are not allowed to “discriminate” (in other words, they can’t deny or drop clients for positive blood test results), but they are allowed to raise costs. To me, that just seems like another form of discrimination. Looking at the issue this way, it’s possible to start to see the apparent real life issues that could come into play in the near future if the bloodspot banks continue to evolve. This bloodspot research has led to a firestorm of debate and offers a lot for us to consider.

If your bloodspot is currently stored, how do you feel about that? What concerns or questions do you have? Would you have a problem with your bloodspot being used for any type of research? What do you think? If you’re interested in learning more, click here.

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About danieltarockoff

I am 18 years old and a freshman at the University of Michigan.

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4 Comments on “Michigan BioTrust”

  1. ianbaker2041 Says:

    I was born in the United States (not Michigan though), so I probably do have my blood spots saved somewhere. I don’t know where or if I even do at all, but regardless, it doesn’t bother me. If researchers want to use my DNA for testing and research of potentially deadly diseases, please go ahead. I have no problem with that. Genetics usage for the purposes of curing diseases has not only proven helpful in the past but has given us a greater understanding of how our genes may play a role in various diseases. Not too long ago, for example, doctors couldn’t understand how age and cancer were linked; they intrinsically knew that they had to be, but they couldn’t give a biological explanation for it. Now, we know that the depletion of telomeres (base pairs at the end of our DNA that do not code for any traits) can be linked to the creation of oncogenes (parts of our DNA that function to promote the growth of tumors) and telomerase, the enzyme that helps prevent the premature breakdown due to DNA replication of telomeres. The specific science isn’t really that important, but what is critical is how discovery offered us a host of ways to address not only cancer but also the aging process. If my DNA could help solve problems like this that continue to baffle doctors, I’m all for it.

    There are some things, however, that DNA probably shouldn’t be used for. While there might be some sort of scientific link between intelligence and your DNA, socioeconomic reserach tends to suggest otherwise. In fact, the greatest known predictor of academic success is parental income. I don’t want to completely discredit the idea that DNA and intelligence could be linked, but until society sees convincing evidence of it, DNA shouldn’t be used to group children into different schools.

    Then we get to (in my opinion) the most interesting issue at stake here: should the government be able to have my DNA? In the last fifty years, Americans have become, on the whole, far more suspicious about their government, and I can see some good reasons for that. The disaster in Vietnam and the soon-after Watergate Scandal tarnished the idea of an “imperial presidency” as known during the time of Richard Nixon. Issues with the government losing money and entering us into seemingly unprofitable conflicts (think Pentagon “misplacing” billions and the wars in Iraq and Afghanistan) have exacerbated the problem. I can see why, in light of these circumstances, some Americans would not want their DNA in the hands of the government.

    I, however, have no problem with the government holding my DNA, and I really don’t see why anyone else should either in spite of these issues. There isn’t that much that they can do with it anyways. What are they going to do? Look at it and try to convince the public that I’m not smart enough to be at the University of Michigan? Try to restrict me from certain jobs because of one trait? While it is POSSIBLE, it’s extraordinarily unlikely that anything remotely like this would ever happen. Since I’m not a criminal, I don’t care if they hold it for that reason, and I really can’t think of any more objections to the government holding my DNA besides the “no consent excuse”; that is, the government shouldn’t have my DNA just because I haven’t given them permission to have it. This excuse, however, fails to convince me because it only serves to make society pay more to get permission for everyone’s DNA samples.

    This post has really reminded me of why I do stand so firmly on free bio-research and favor a scientifically-led society in general. The benefits that we can get far outweigh the potential costs, and DNA banks from babies serve only to reinforce this.

  2. erfreed3 Says:

    I think you brought up a lot of good points in this post. Mainly the idea that on the surface, taking bloodspots is an effective way to save lives. Like you, I am fine with my bloodspot being stored. In addition, I am fine with my bloodspot being used for medical research. However this only applies if that research is in pursuit of curing diseases. I have to take a firm stance in saying that bloodspots should not be used to determine intelligence. Intelligence, whatever that is anyway, has not been scientifically proven to exist as an all-encompassing unit that can be measured. Furthermore, I believe by determining a child’s intelligence, we begin to put people into categories. Personally, I don’t like categories because I think they suppress the individual’s potential for excellence. Also, the environment a child is raised in can have a tremendous amount of influence in developing intelligence, among other traits. So personally I just don’t find that use ethical.

    Concerning life insurance, I don’t believe that it is fair for insurance companies to discriminate against clients with positive test results. I mean, personally, when I think of insurance, I see it as a cushion of relief. The whole point of life insurance is to provide relief if one dies. So I don’t really understand how a life insurance company would drop children with positive test results. I mean, I understand it from an economical standpoint but to me it just seems immoral. Raising the price does seem a little more just, because the person’s chances of death have gone up. However, I’d say it’s a pretty delicate issue, and if the insurance company were to raise the price, it should not be drastic.

  3. Patrick Smith Says:

    In my opinion, this blog post and its topic has a lot of ideas one must consider. First of all, the fact that the newborn screening saves so many lives is a huge aspect. It tests for diseases that otherwise would often be very difficult to diagnose in a newborn. These diseases, left unnoticed and untreated at an early age can pose huge health risks and death in these children. It seems to me, that if a parent had the right to choose whether their child gets the screening or not, a lot of issues are brought up. First of all, is it moral to let a parent choose whether their child gets the screening? For example, say the parents decided not to allow the screening, be it because of the research that may be done, the principle, or any other reason. What if, because they doctors could not recognize a disease, that child develops a disease or even dies. How is this fair to the child? They had no say in whether they got screened, and if they did they would be perfectly treated and healthy. Also, how would the parents feel? Would they be mad at the system? Question their decision? Who knows. But, with this scenario, lets quickly look at the consequences that could happen from someone saying no to the screening.
    1. The most obvious one – the child could have one of the diseases go unrecognized and die.
    2. The disease could be noticed much later than it would have in the screening, and the treatment being delayed could have huge consequences.
    3. The lack of the bloodspots that were not consented for would seriously hinder the progression of research that the bloodspots are used for.
    So, are these consequences, both for the public and the individual who is not old enough to speak for themselves, big enough to make the bloodspots mandatory? In my opinion, yes, but with a stipulation. I think their needs to be a committee of some form to debate, discuss, and decide what the bloodspots should be allowed to be used for. This could attempt to dispel some of the worrying the uses in research.

  4. amgille Says:

    I really enjoyed this post, not only because I didn’t know about the bloodspots, but because of the questions it raises. While I was not born in Michigan, I would also not be surprised to find out if my bloodspots were being held somewhere. The idea behind the project is great as it can help save the lives of children everywhere, keeping them from being affected by heartbreaking diseases down the road. In this regard, if I was a parent, I would not be opposed to the screening tests of my children, yet I understand the controversy on the taking of the bloodspots without consent. I feel that in every medical procedure and screening, consent should be required before medical specialists can take over.

    However, I also feel that the blood spots should only be used for the findings of the treatable diseases. For instance, in school I watched Lorenzo’s Oil, which was the story of a young boy who developed ALD, a degenerative brain disorder. The movie follows the family as they search for a way to halt the disease, eventually ending with the finding of an oil that stalls it. Now, other children with ALD can lead normal, healthy lives, as long as they take the required oils and diets that are required. If the bloodspots are able to detect diseases such as this and keep children from this problem, it stands as a good practice. Yet, the testing and determining intelligence should not be based off of these blood samples, especially if it leads to placement of children in different schools. Who is one to say if a child is intelligent without actually observing that behavior? I feel that by placing a child in a school for the less intelligent, one is stunting that child’s intelligence even further, promoting a weaker intelligence level than an integrated school system would have produced. In effect, society would be creating a new form of caste system, allowing some children to be higher educated to take better jobs, and have the others be discriminated against further for the “lower” jobs in society.

    Also, the insurance claims, as it always seems, are unfair. The insurance companies, while not “discriminating,” by turning away individuals, still discriminate in a way. Raising costs to such high prices is not the act of indiscrimination, especially as it is for an individual that is treatable. An individual with this disease will still be forced to pay a higher premium than the average person, based on the bloodspots. So, while not being completely denied and living without insurance, they will instead be forced to bleed money out for the insurance agency. Is this indiscrimination? I think not.

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