Genomics and the 2018 Election


Author: 
Theral Timpson

The last two years have had us on edge.  It had scientists marching in the street.  That was unprecedented.

So what does last week’s election mean for the genomics community?

Scientists can focus on science

A friend of mine put it this way, “When Obama was in office, I realized I’d been like a cat, relaxed and having my nap in the afternoon. When Trump was elected, I felt like a mouse, always on edge.”

There are studies showing (did we need studies for this?) that relaxed states are better for focus and creativity.  The Libertarians have been supportive of Trump and his doctrine of rolling back regulations and “draining the swamp” of professional governmenteers, saying this is good for innovation.   The opposing argument is that when we’re all wondering if the basic things that we’re used to counting on--our drinking water, basic education, respect for the planet and its limited resources--are all going to go to hell, we might not be innovat-ering at our optimal pace.  Not to mention such things as the funding of the NIH, which Trump proposed to cut by one fifth.

The stock market took a quick sigh of relief, and so too have a lot of scientists.  Something tells me even the data is happier this week.  Single HPLC peaks are showing beautifully.

Still, let’s agree too, that scientists--that we all--have become more aware of the precariousness of the fundamental values of the enlightenment, like reason and science: this has been a good outcome of the past two years.  And let's celebrate the fact that we can say now, “the past two years” with some knowledge that the next two will be different.    

Scientists have become more civically engaged.  Some even ran for office.  It was laudable.  At the same time it was horribly unfortunate that professors of science who had spent a lifetime, or half a lifetime, developing their minds in a special discipline and contributing to a body of research and to a community in pursuit of big fundamental questions of biology would have to go to Washington and fight for the basic right to be able to do such research.

John Adams wrote:

“The science of government it is my duty to study, more than all other sciences; the arts of legislation and administration and negotiation ought to take the place of, indeed exclude, in a manner, all other arts. I must study politics and war, that our sons may have liberty to study mathematics and philosophy. Our sons ought to study mathematics and philosophy, geography, natural history and naval architecture, navigation, commerce and agriculture in order to give their children a right to study painting, poetry, music, architecture, statuary, tapestry and porcelain.”

I wonder where he would have put evolutionary biology.

DTC Testing

Speaking of cats, some say there is one cat that came out of the bag with Trump’s election that won’t be going back in with this recent election.  DTC testing is having a heyday, and most of the thought leaders in our field think that now that Pandora’s box is open, it won’t be shut, even if a Democratic president is elected in 2020.

For years the FDA kept a tight lid on DTC testing.  Those days are over with the Trump administration.  I’ve just today seen the new Helix ad promising folks "100 times more data on important health and lifestyle information”.    Black Friday is upon us.   Last year, DTC tests were competing with the InstaPot on Amazon at this time of year.

What’s the problem with genetic testing going DTC without FDA oversight?  I encourage everyone to listen to Laura Hercher’s recent podcast with Matt Fender over at the Beagle Has Landed.  What struck me most about this interview was that Matt represents the next generation, one that is growing up with DTC testing as a part of life and assuming that the tests mean something.  Afterall, it’s our DNA.  Isn’t there ample scientific data connecting our genes with disease?  Matt went through terrible anxiety before he got to a doctor and a genetic counselor and did some confirmation testing with a clinical company which confirmed that he had nothing to worry about.

As I say, the clinical community has accepted this shift on DTC testing, and are now moving on, albeit with advice and caveats.   In a recent Mendelpsod interview with Daryl Pritchard of the Personalized Medicine Coalition, this was the warning he gave to anyone and all:

If you get a DTC test, don’t belive anything it says until you go to your doctor or unless it's approved by the FDA. 

Ummm . . . O . . . K . . .

But I'm not ok with it, and disagree with most others on this.  I think the cat has to go back in the bag.  And will when the first big scandal breaks, such as a woman getting a BRCA test from 23andMe that she thought was the real thing only to find out it wasn't.  She sues 23andMe.  And she sues the FDA when she hears how it could have been done right and is done right in some countries.  Why are we playing around with this?

Race and Genetics

Race was a big topic in the election, driven, as we all know, by the president himself. Amy Harmon wrote a piece in the New York Times that provoked the committee at ASHG to issue a statement on race and genetics.  No doubt the topic will die down somewhat now, but I think it’s an important conversation, and I plan to write more about it.   And whether scientists continue to run for office or not, they can always speak out more in public on the question of race and genetics.

Why is race not genetic?

We’ve heard on this program many times from geneticists how certain diseases are correlated with certain racial groups.   African American women have a higher rate of abnormal BRCA1 or BRCA2 genes.  Ashkenazy Jews have known for years they should be tested for the cystic fibrosis CTFR gene because of studies showing it runs higher in their population.  (There I go, conflating "population" with "race."  Come on, geneticists.  Work with me here, and quit dodging the question.)

That white nationalists in this country are now using studies such as these and other studies not always on the topic of health and disease to promote their despicable project of racial purity is abhorrent, and it needs to be answered in direct easy-to-understand language.  I’m talking about language one would use in the bar or at the barbershop.  We all have family.  What language are you going to use at the Thanksgiving table, for instance?

So, Uncle Bill, you’re reading science now?  What else have you learned--could you pass the candied yams?  Did you come across that article about the planet heating up as well?

Have you also read the science showing that the ancestry of all white Europeans goes back to Africa?  At what point did the Homo Sapiens who had walked out of Africa into Euorpe become pure? 6,000 years ago?  2,000?   When was the cut off?  And how do you define pure?

We also have to face the fact that Trump’s election and the populist movements around the world have exposed “some bone,” have caused many of us to face our own epistemic realities.  Whence science?  Whence truth and fact?   What is science?  Is there a special scientific method that spearates science from other knowledge gathering disciplines, such as cooking or gardening?   We all know the troubling statistic that a majority of biomedical research cannot be reproduced.   This soul searching journey will go on even after what's his name . . .that one guy . . . Melania's husband . . is gone from the White House, one way or another.

Comments

"African American women have a higher rate of abnormal BRCA1 or BRCA2 genes. Ashkenazy Jews have known for years they should be tested for the cystic fibrosis CTFR gene because of studies showing it runs higher in their population."

Not sure either of the rates quoted above are correct.

"At what point did the Homo Sapiens who had walked out of Africa into Euorpe become pure? 6,000 years ago? 2,000? "

This one seems to be off by nearly to two orders of magnitude. Was this intentional?



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