What bioinformatics tools and tutorials would you recommend to a family that has lost multiple family members to cancer? In the specific case that prompted this question, there oncologist has given them some information about the specific mutations involved in the cancer found in one family member that had recently passed. Of course, they do not know how to interpret this information themselves, and their oncologist probably said a few sentences to explain what (s)he knew about the mutations and their relevance to possible treatments. Whatever was said was not enough to satisfy the families desire for more information. So dear friends and colleagues, how would you go about advising this family about where to start their own study/research, if they were your friends?
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gregory.louie •
I would turn them to Genetics Home Reference. It's aimed at non-science readers. http://ghr.nlm.nih.gov/
In addition, the Genetic Test Registry may offer some guidance. https://www.ncbi.nlm.nih.gov/gtr/
I am interested to hear what others say, though. I have been toying with the idea of more general public outreach tools, and would like some good examples. Or if there really is nothing, it's time to write a grant proposal....
This just came across the twitters too.
“I had to deal with this, had to get tested and start taking steps to prevent cancer.” https://t.co/NNWELbnmjz pic.twitter.com/OmJ0LfavOZ
— CDC_eHealth (@CDC_eHealth) November 16, 2015
In case the tweet doesn't load in comments, it goes to this story of a family with Lynch syndrome. The page has more resources: https://www.flickr.com/photos/cdcsocialmedia/21246495574/in/album-72157658932322460/
MyCancerGenome would be another resource that is pretty simple to use that I would recommend.
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I would like to bump this for Monday readers to see. I'm still interested in public outreach issues, and I'd love to hear how this is handled outside the US too.