Tag Archives: privacy

SNPpets_2

Friday SNPpets

This week I left the “call to action” tweet at the top–you could vote for GenBank every day until the end of the competition. On other fronts, there’s big media on Venter’s DNA re-identification article–but there’s also significant blowback on that. A series of tweets in there gets to that. Otherwise, more of the other cool things in genomics around the tools available and around other species.


SNPpets_2Welcome to our Friday feature link collection: SNPpets. During the week we come across a lot of links and reads that we think are interesting, but don’t make it to a blog post. Here they are for your enjoyment…


https://twitter.com/david_a_knowles/status/905203427931602944

https://twitter.com/clairemcwhite/status/905445932094939136

 

Friday SNPpets

This week’s SNPpets include a range of tools and genomics studies, from microbial to planaria to salmon to humans, as usual–as well as some that are species-agnostic.  Also stuff that is aimed at drug targets and pharmacology, including the Open Targets project Target Validation Platform. There’s a new DNA privacy bill under discussion in the US that I found interesting. Also–next Monday April 25 is #DNADay! Participate in community outreach with a number of strategies.


SNPpets_2Welcome to our Friday feature link collection: SNPpets. During the week we come across a lot of links and reads that we think are interesting, but don’t make it to a blog post. Here they are for your enjoyment…


 

SNPpets_2

Friday SNPpets

This week’s SNPpets include transcription factor binding site evolution–with their secret partners transposable elements; PrecisionFDA coming along; bad habits of bioinformaticians; new synthetic biology tools and rock star status; consumer reluctance to share their health data; Russian genomes on the way. And more, including the XKCD on DNA in case you missed it.


SNPpets_2Welcome to our Friday feature link collection: SNPpets. During the week we come across a lot of links and reads that we think are interesting, but don’t make it to a blog post. Here they are for your enjoyment…


Tip of the Week: Creating an Electronic Informed Consent


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.”

There are many ways to create an electronic survey, but this set of tutorials makes it straight forward using LimeSurvey and iCONS. The other short sections are here: Part two, three, four and five.

… 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)

Quick links:

iDASH: http://idash.ucsd.edu
iCONS: http://idash.ucsd.edu/electronic-informed-consent
iDASH Tutorials: http://www.scivee.tv/user/17631

Reference:

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

Ethics committee report on genome sequencing and privacy

Well, this changes my morning. It’s a 150 page report.

Get the report itself here: Privacy and Progress in Whole Genome Sequencing

Press or blog coverage (I’ll update if I see others):

Nature: US ethics panel reports on DNA sequencing and privacy

Science: President’s Ethics Panel Urges New Protections for Whole Genome Data

AP: Bioethics panel urges more gene privacy protection

USA Today: Panel: Protect patients who use whole genome sequencing

AARP: How private is your genetic code? Less so than you might think.