The promise and peril of reading your genome in 2017 (or for that matter, 2018)


Originally published at:


Tests that allow the identification of hidden ethnicity or disease; how could that possibly go wrong in Trump’s America?

See also the near-extermination of Down’s Syndrome over the last few decades. Down’s births plummeted as soon as pre-natal testing became available.


Can we please leave this thread open for more than four days? I think we will need some time to gather our thoughts (and to listen to the podcast, in the first place).

This is immensely important. Much more than the Singularity.




There’s another reason to not have your DNA tested; if you ever left some at a location where a crime was subsequently committed, law enforcement could grab the DNA results from the lab, match them to you, and now you’re in the position of having to defend yourself even though it was a day or more before the crime took place.


I recently learned that AncestryDNA added the feature of downloading your genome for analysis, so I did it, and ran it through Promothease.

Interesting stuff, mostly all stuff I already knew. I was giving my sister a play-by-play of the neat things I was finding in the Promethease report when I came across a 7x increased chance of Schizophrenia.

Me: “Oh wow! 7x chance of Schizophrenia”
Sis: “Do you think there’s a chance you’ll get it at this age?”
Me: “We don’t think so, no”
Sis: “UGH.”

I troll my sister a lot.


This is such an important and timely topic. I’m a journalist who writes about science. I’m the author of a short memoir about Huntington’s called “Blood Brother: The Gene That Rocked My Family.” A few years ago we discovered my brother had Huntington’s disease shortly before his death. My family was devastated, and then the rest of us faced an agonizing decision: should we get tested? What good would it do to know, since there aren’t any treatments or a cure? Some of us did take the genetic test, while others didn’t want to know. But the secrecy around Huntington’s continues to haunt my family.


I knew a guy who did the Huntington’s test as a teenager. It was positive.

So, he spent his life as a wandering circus performer, and had a lot of fun while he could.


I probably have a genetic deadly allergy to some anesthetics. I say probably because until recently the only definite test was doing a biopsy on a chunk on leg muscle. Worst name ever: Malignant hyperthermia. (Latin for deadly temperature rise, but it sounds like Infectious Hyper-plague.)

A cheap genetic test would have made tracking it through the family tree at lot easier.

I have no sympathy for some people when they get their genome results back:


I think that knowing about your genome could be a good thing, as long as it is your choice, but only if we have universal health care and good protections against genetic discrimination. Sadly, not the situation right now, specially when we are so good at discriminating based on the genetic differences that we can easily notice.


WOW - what a chilling situation :frowning: And I just bought your book and added it to my “to-read” queue. I’ve never known anyone who’s wrestled with this disease first-hand, having only known of HD’s from learning about genomics…


I have mixed feelings about it. It is the sci-fi technology of the future, today! And it could do so much good. But the future we’re living in isn’t Star Trek, it’s more Cyberpunk dystopia.

There’s no real chance of confidentiality anymore even for basic things, let alone sensitive things like passwords and social security numbers. So thinking about when (not if) this genetic information is breached, leaked, readily available (and expected) in background checks, etc. - that is a bit chilling. It could affect employment decisions, compensation and benefits, ability to rent or own housing, to get a loan, and most notably, health care. In some countries (well, at least one) people without insurance don’t get health care and insurance companies are for-profit, with profits driven by excluding those who might actually need a payout.

So on the one hand, a test that could tell you that you’re doomed in 20 years might encourage you to live those 20 years to their fullest. And that could be a good thing. But maybe not so much in a world where it would also condemn you and your family to a life of poverty and misery for those 20 years, unable to enjoy them and possibly not even able to survive that long.


Thanks for your email and for checking out my book. I also attended a global gathering of families with Huntington’s disease with the Pope at the Vatican last May, with the goal of bringing attention to HD. Wrote about it for STAT.

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