Rare Disease Report

Presidential Science Questions Ignore Genetics, Rare Diseases

OCTOBER 03, 2016
Ricki Lewis, PhD

An organization called sciencedebate.org has crowdsourced and expert-checked a list of “20 science-driven issues (that) deserve their own debate” for the presidential candidates.
Great idea, I thought. After all, the topics come from “Several of America’s leading science and engineering organizations” 
I’ve just read all 42 pages of the 2016 responses, and will save RDR readers time if they’re looking for anything on rare diseases, genetics, genomics, DNA, or basically anything other than climate change, infectious disease, and space science.
It isn’t there.
More attention is devoted to ocean science than to the plight of the 30 million Americans with rare diseases. The only response even remotely related to DNA is that of Jill Stein, who copied-and-pasted an anti-GMO opinion into three places.
The questions are touted as “America's Top 20 Science, Engineering, Tech, Health & Environmental Issues in 2016”. I searched excitedly for mention of the Precision Medicine Initiative, which I picked as 2015’s breakthrough of the year, but was disappointed. Millions of people are having their genomes sequenced, and nothing. Cancer is brought up only once, in the context of the Cancer Moonshot. (Don’t get me started on that one – as if it hadn’t occurred to anyone to fund cancer research until 2016.)

But perhaps the DNA ignorance is not the fault of the candidates, considering the list of the 20 topics that they were charged with addressing:

1. innovation
2. research
3. climate change
4. biodiversity
5. the Internet
6. mental health (question posed as if this is one disease)
7. energy
8. education
9. public health
10. water
11. nuclear power
12. food
13. global challenges
14. regulations
15 vaccination
16 space
17 opioids
18 ocean health
19 immigration
20 scientific integrity
President Obama not only started the Precision Medicine Initiative, but has had a long-standing interest in genetics and genomics in general, and in rare diseases in particular, as demonstrated in his signing the FDA Safety and Innovation Act in 2012, accelerating approval for rare disease therapeutics. I hope that despite the glaring absence of rare diseases on the top 20 list, that the next president can continue President Obama’s recognition of the importance of developing treatments for all diseases.

Images courtesy wikimedia commons.

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