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/