Strategic plans and genome sequencing

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Sandra Porter
This morning I attended a "bloggers-only" conference call with Dr. Eric Green and the folks from the NIH Human Genome Research Institute (NHGRI) to hear about NHGRI's new strategic plan. The new plan represents a shift away from viewing the genome through a lens marked "for research use only" and towards the goal of making the genome useful as a clinical tool. As a consequence, we will see a greater emphasis on funding activities that support clinical work. For example, it's not always clear how variations in the genome are related to disease. NHGRI might fund projects that help sort and categorize this information. It's certainly not clear yet what NHGRI should do to help patients and physicians handle the genetic information onslaught, particularly in the area of personal genomics.

Personally, I think some of the folks at NHGRI might find it eye-opening if they were to sign up with 23andme and see the sorts of genetic information the general public can get.

My family and I all took advantage of the "genetic testing special" last December and mailed 23andme our tubes of spit. Since we got the results, we've had lots of fun figuring out who inherited which alleles from who and learning why some of us can drink coffee at night. We've also spent some time explaining to our kids that some of results are far less meaningful than others and why a 1.1 fold increase in risk for some disorder is not terribly alarming.

I have to admit, 23andme has some pretty nice videos and education resources.  Getting teenagers to sort through all the information is not easy, but the information is there, if they care to look.

Which brings me to the point where I found the conference call a bit disappointing.

In the phone call, Dr. Green called out education and training as one of the important cross-cutting themes that must be supported if the benefits of genomics are going to be wide-spread. Genomic information isn't likely to be used widely unless the general public understands those benefits.

Since NHGRI doesn't fund many education programs, except at a graduate level, and since the one NIH institute that does fund education (NCRR) is being dismantled, I was interested to know if NHGRI has any plans to take over that role. So, I asked Dr. Green if NHGRI has any specific plans to support genomics education.

His answer was longer. The short version was "no."

At this point, I really don't know why there's a special box in the strategic report on education and training. Maybe those subjects are only mentioned because we know they're important, not because we plan to do anything. Maybe, like personal genomics, we'll just leave that subject to groups like 23andme.

Green ED, Guyer MS, National Human Genome Research Institute, Overall leadership, Green ED, Guyer MS, Coordination of writing contributions (see Acknowledgements for list of other contributors), Manolio TA, & Peterson JL (2011). Charting a course for genomic medicine from base pairs to bedside. Nature, 470 (7333), 204-13 PMID: 21307933

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