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    #209662 01/26/15 09:18 AM
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    I'm interested in opinions here.

    I'm going to allow my twins to participate in a research study on dyslexia. It involves taking an IQ test, plus various tests used to diagnose dyslexia. One of my boys is PG with no 2E issues; the other is 2E/HG with dyslexia.

    The research I'm not sure about is their request to take DNA samples to look for genetic markers for dyslexia. I have a choice to say no (of course), or I can allow use just for this research test, or I can allow them to keep the DNA for a longitudinal study (presumably testing their children).

    Personally, I think the research is fascinating and could help our understanding of dyslexia. On the other hand, I'm concerned about privacy and it doesn't seem like it's a good idea to allow my kids' DNA to be just "out there."

    Opinions?

    Last edited by syoblrig; 01/26/15 09:18 AM.
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    This will totally not be helpful, but...

    ...as a person with graduate training in both molecular genetics
    and the learning disabilities field, I would be all for collecting the samples.

    ...as a parent, I admit to feeling rather squeamish for privacy reasons.

    What kind of assurances of aggregation/disaggregation do they have? How much PID is connected to the DNA? How open-ended is the consent for research beyond this specific project?


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    My first thought is where do I sign up my kids? And DH's whole family?! I have a LOT of questions about how dyslexia may be manifesting in quite different ways throughout my children's gene pool, compensated/ masked by a range of gifted skills and high memory. The available research is so limited, I would love to see more high-quality, useful and meaningful results.

    But there's the rub: a rather large portion of research out there is none-of-the-above.

    So you want to know the quality of the research team, how likely they are to produce valuable results, and how trustworthy are they to protect your data to best practices. The best proxies are 1) who is funding the research; and 2) what and where has this team published before?

    For funding, ideally they are currently, and usually, funded by the NIH or some other large organization with integrity and good peer review. Ask where the money comes from, who did the review, and from whom they have received ethics approvals. (Actually, this info should be prominent on any documentation they have given you). Where is the research team based, and is the department, university/ hospital also one with a good reputation for research quality and integrity?

    For publications, do they have a track record of publishing results that seem meaningful and important to you? Do they publish in reasonably high-quality journals or almost always in very obscure ones? Is their work frequently cited by other researchers? (Google and Scholar are great for this kind of query). You want to know that other people think their results are important, and that they are disseminating their results to people who can use them - so not just to other scientists just like them, but geneticists as well as clinicians and health or education leaders if the work has implications which might impact diagnosis or interventions.

    Finally, review the consent forms and protocols carefully to make sure you know exactly what you are agreeing to under the different scenarios. Who can or might someday see your data? If they hold your DNA for the long term, they will undoubtedly test it some day for things they don't even know about yet. What info, if any, will you receive in the short term? If they find something unexpected - ever - will you be told or not? Are you OK with that? Will they share the samples or data with other groups, ever?

    You have absolutely have every right to all this info and more, and if they are remotely hesitant about providing written answers to any of these questions, then I would in turn be very hesitant about participating.

    Otherwise, I would say with reputable research organizations, the biggest privacy issue these days is more likely to be that patients and research subjects would actually benefit from MORE sharing of their data, but privacy concerns do not allow professionals to share and collaborate, or provide info back to participants if it wasn't specified in the original protocol. So if you are comfortable with the responses you get from the research team, go for it! And my thanks for contributing to research that could some day help kids like mine.

    Here's a random collection of assorted links that popped up on my quick surf - some academic, some patient info, and some more news-ish - with some good questions/ varying perspectives. Hope these help and don't drown you in info!

    http://geneticalliance.org/sites/default/files/publicationsarchive/0000informedconsent.pdf

    http://www.genome.gov/10001752

    http://www.ccmg-ccgm.org/documents/...mt_EPP_CAGCInformedConsent_16Jul2008.pdf

    http://www.theverge.com/2012/12/12/3759198/23andme-genetics-testing-50-million-data-mining

    http://www.dnapolicy.org/resources/AJMGPartC.pdf

    http://tidsskriftet.no/article/2890607/en_GB

    http://www.scientificamerican.com/article/exposing-the-student-body/

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    As long as they don't make a clone out of him, I would be okay. What can they really do with his DNA?

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    Hypothetically? Identify deleterious mutations linked with the probability of expensive diseases, affecting his access to health insurance or employment in sensitive fields? Hypothetically, of course, for the most part, except for the question of whether Huntington's positive individuals should be allowed to be commercial airline pilots.


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    Thanks for your thoughts about this-- and Michelle, thanks for the links!

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    Any reputable research organization should keep all data under lock and key. Within the lab, individuals' data should be listed by an ID code, not by name. And only aggregate data (statistical results combined across multiple people) should ever be published. Heck, I have to follow these procedures, and I do the most benign sort of behavioral testing.

    If you follow MichelleC's suggestions and they check out okay, your data will be very well protected.

    (I would not worry at all about the DNA being kept for future analysis, provided future uses receive all the same protections as one-time use, which they should.)

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    Originally Posted by syoblrig
    Personally, I think the research is fascinating and could help our understanding of dyslexia. On the other hand, I'm concerned about privacy and it doesn't seem like it's a good idea to allow my kids' DNA to be just "out there."

    I basically share your opinion - fascinated to know what the research will turn up, and very wary of having my children's DNA type in a database somewhere, no matter how well protected and anonymous it is in theory.

    Just curious - how old are your children? One of my teens has asked for DNA testing for a completely different reason (ancestry) - this is something that I am willing to let her do now because I feel like she's old enough to weigh in on the pros and cons of what it means. I can't say for sure this is how I'd act on a research study like your children are participating in, but I think I'd probably say "no" to the DNA if they are still young, but if they're a relatively mature teen I'd let them make the decision.

    polarbear

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    My kids and I donated our DNA to a research study. I am a scientist and thought that the research question was important enough that it outweighed the potential risks. We received no info about ourselves from the study and honestly, I am glad. If they ask us for more DNA at a later time, I would do it again in a heartbeat.

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    I used to work as a research study coordinator and I don't think you have anything to be worried about. Read the consent form, there should be notation of how your data will be stored, identified and used. Anyone who does research has to have their protocols approved by an institutional review board (IRB), which exists to protect the privacy and safety of study participants.

    I would ask what kind of information they will give you about the data (genetic and otherwise) that they gather on your kids. Some studies will give participants lots of information while others do not.

    There are several known genetic markers for dyslexia. I had my DNA and my son's DNA tested by 23andme.com. I have one of the dyslexia genes and am dyslexic, my son does not have it and is not dyslexic.

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