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I attended the '10 ACMG mtg, my 1st as Counsyl employee. We were few months into having launched expanded carrier screening, then called the Universal Genetic Test. It was also my first direct interaction with the genetics community representing a company. A long thread... (1/n)
Without exaggeration, a company founder and I were called - among other labels I've forgotten - evil, dishonest, arrogant. One person was *irate* that we might refer to ourselves as "Genetic Counsylers" and sully the name of my profession. (2/n)
The reasons for this were many:
- we as a company and individuals were unknown/unfamiliar to the genetics community
- the test was DTC and the price was considered tgtbt
- some of test content was disagreeable to many
- the premise of ECS itself was disagreeable to many
(3/n)
- we as a company and individuals were unknown/unfamiliar to the genetics community
- the test was DTC and the price was considered tgtbt
- some of test content was disagreeable to many
- the premise of ECS itself was disagreeable to many
(3/n)
Around this time, the vitriol took to the internet as well. The NSGC list blew up with messages ranging from reasonable skepticism to outright disgust. I made one mistake I'll remember - I tried to address concerns by replying. Oops. In short, it didn't work.
(4/n)
(4/n)
One thing that *did* help was the interjection of an established, respected GC. She encouraged people to listen and discuss with a greater tone of respect. She also encouraged support for a fellow GC, me, as a sign that Counsyl can learn and grow in the right direction. (5/n)
I'm appreciative of her action even now. Other than having thanked her, I don't think I've paid her back in favor, and perhaps I haven't paid it forward either. I don't know. Conflicts notwithstanding, I'm available to help people who reach out to me. (6/n)
But it was nonetheless a critical learning lesson in understanding how one single community will be comprised of supporters, constructive skeptics, and absolute deniers. Navigating these to introduce an innovation has given me a skill (and stomach) to deal with attacks. (7/n)
It's also helped me appreciate the difficult road a new technology faces when entering into this field. I don't have a stake in the company that's currently on the hot seat. But I do hope they find support and healthy critics among us that help shape their next steps. (8/n)
Back to ECS: racial equity was a key benefit outlined even back then, including in our paper that produced the first clinical data. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3908551/
And again in 2016, when we published a 360K+ dataset that unequivocally demonstrated a racial equity gap that ECS can narrow. (10/n)
Despite the data, my colleagues and I continued to receive critiques on character and scientific/clinical integrity. In public forums, I was accused of eugenics, financial greed, and apathy toward true patient wants and needs. Me being a brown-skin patient was irrelevant. (11/n)
These remarks came from geneticists, GCs, other HCPs; public and private institutions; large and small orgs; for- and non-profit; other companies that didn't perform ECS. I can't think of a group that uniformly supported the voluntary ECS (except, maybe, patients 
). (12/n)
). (12/n)
This isn't meant to be a wholesale critique of health care professionals. What I'm hoping to illustrate is that there wasn't an immediate consensus *anywhere* to rid ourselves of disparity-causing practice, and implement a more just one. (13/n)
And this is still true today. Medical societies and payer policies do not endorse ECS, one of the most tangible steps they could do *right now* to create more equity in health outcomes. Individual providers all over Twitter do not practice ECS today. (14/n)
And change/lack thereof has not happened in stereotypically assumed places. A two-office clinic in TN was one of the first ECS adopters in 2010. A SF Bay Area-based system that serves a diverse population of millions doesn't do routine ECS in 2021. (15/n)
Why? I think people arrive at decision points on different timetables. Yes, urgency can be motivated, but there are limited circumstances in which decisions can be required. (In my completely non-professional opinion) (16/n)
What's my point? The last couple of weeks have unfolded themes that have prevailed over a large part of my career experience: envelope-pushing tech and reactions to that, $ in health care, ECS, ACMG...
Mistakes and how to recover from them.
(17/n)
Mistakes and how to recover from them.
(17/n)
From that angle, I have two thoughts on possible actions as we move forward:
1) Public venting is fine. A company, and to an extent all its reps, must be able to tolerate this. But it might not be the best avenue to produce change. (18/n)
1) Public venting is fine. A company, and to an extent all its reps, must be able to tolerate this. But it might not be the best avenue to produce change. (18/n)
It's impossible to respond productively to a public accusation of eugenics. But, I never would turn down a direct conversation to receive critical feedback on me, my company, or products.
Someone at an org is putting all into their work. Help them make it worthwhile. (19/n)
Someone at an org is putting all into their work. Help them make it worthwhile. (19/n)
2) Many of us are in self-examination periods and will be for a long time. Let's uncover and address injustices; but also be aware of where we have, and may continue to, perpetuate them. Including in our clinical practices. (20/n)
If this thread meant anything to you, I'd love to hear that. If it sucks, I'd love to hear that, too. I'm hoping to share my learnings and welcome the opportunity to learn from others. (21/n)
Speaking of different timetables, it took me longer than it should have to understand this:
Genetic Counselor: “I’m afraid your DNA is backwards.”
Patient: “And?”
(22/n)
Genetic Counselor: “I’m afraid your DNA is backwards.”
Patient: “And?”
(22/n)
(This tweet left intentionally left blank because 23 seems like an appropriate number to end on.)
