Informed consent has been a foundation of research, and especially genetics research, in that last few decades though it’s taken quite some time to right past wrongs. And with genomics research and personal genomics generating huge amounts of data, informed consent becomes both more important and more complex. The National Human Genome Research Institute has a pretty good selection of information and regulations surrounding informed consent including the regulations, guidelines, specific NHGRI guidelines and applicable federal legislation. If you are doing human genetics and genomics research it would behoove you to make sure you understand the guidelines and issues. A good paper to read to understand would be the article, “Tailoring the process of informed consent in genetic and genomic research” in Genome Medicine cited below.
Depending on your institution and support, you might not have to ever write up or administer informed consent documentation, but often smaller institutions or projects must. So, let’s get to the nitty gritty logistics of actually creating an informed consent survey and document.
Today’s Tip of the Week is the 4 minute first part of a five part series from iDASH at UCSD on creating an electronic informed consent using LimeSurvey and then using iCONS, iDASH’s Informed Consent Management Tool. iDASH:
“is one of the National Centers for Biomedical Computing (NCBC) under the NIH Roadmap for Bioinformatics and Computational Biology. Founded in 2010, the iDASH center is hosted on the campus of the University of California, San Diego and addresses fundamental challenges to research progress and enables global collaborations anywhere and anytime. Driving biological projects motivate, inform, and support tool development in iDASH. iDASH collaborates with other NCBCs and disseminates tools via annual workshops, presentations at major conferences, and scientific publications.”
… and while I have you at iDASH, I suggest you watch this hour talk by Philip Bourne (at UCSD) titled “In the future, will a biological database really be different than a biological journal.” The talk was given just over a month ago and an update to something Dr. Bourne said in 2005. It’s a good corollary to Mary’s (apt and true) oft-repeated mantra: “The data is not in the papers any more.”
(we’ve mentioned iDASH before and a lecture about the cost curation that was interesting)
Charles N Rotimi and Patricia A Marshall (2010). Tailoring the process of informed consent in genetic and genomic research Genome Medicine, 2 (3) : doi:10.1186/gm141