CRISPR, Consumer DNA Tests, and the Future of Mental Health with Kira Dineen

In this episode of the Neurostimulation Podcast, Dr. Michael Passmore sits down with Kira Dineen — certified genetic counselor, host of *DNA Today* (a genetics podcast running nearly 14 years), and founder of the Gene Pool Media podcast network — for a wide-ranging conversation on genetics, mental health, and the ethics of emerging technology.

Timestamps:

- 16:57 – Introduction and Kira's 14-year podcasting journey

- 19:22 – What genetic counseling actually is

- 25:29 – The emotional and psychological side of genetic counseling

- 32:19 – Consumer DNA testing: benefits and blind spots

- 38:30 – CRISPR explained, and the first FDA-approved treatment for sickle cell

- 45:52 – The 2018 embryo-editing controversy and germline ethics

- 52:28 – Genetics, mental health, and the "marble jar" analogy

- 57:20 – Career advice for aspiring genetic counselors

- 1:02:07 – Lessons on communicating complex science

- 1:04:36 – The future of genetics and AI's role in diagnosis

Resources mentioned:

- DNA Today — Kira's genetics podcast

- Gene Pool Media — science podcast network founded by Kira

- Hidden Valley Road (book) / Six Schizophrenic Brothers (HBO documentary)

- National Society of Genetic Counselors

Connect with Kira Dineen:

- Podcast: DNA Today https://dnapodcast.com/gene

- Network: Gene Pool Media https://www.genepoolmedia.com/

Welcome to the Neurostimulation Podcast.

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I'm Dr.

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Michael Passmore, clinical associate

professor in the Department of

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Psychiatry at the University of

British Columbia in Vancouver, Canada.

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The Neurostimulation Podcast is all

about exploring the fascinating world of

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neuroscience, clinical neurostimulation,

interventional mental health, and

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general mental health and wellness.

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We look at the latest research

breakthroughs and how that

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research is being translated into

real-world treatments that can

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help improve health and wellbeing.

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So whether you're a healthcare

professional, a student, a researcher, or

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just someone who's curious about how our

brains work and what we can do to help

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them work better, this podcast is for you.

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My mission is to make the

science accessible, inspiring,

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and relevant to your life.

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This podcast is separate from my clinical

and academic roles and is part of my

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personal effort to bring neuroscience

education to the general public.

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Accordingly, I would like to emphasize

that the information shared in

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this podcast is for educational

purposes only and is not intended

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as medical advice or a substitute

for professional medical guidance.

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Always consult with your healthcare

provider to discuss your specific

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health needs and treatment options.

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Speaker: Welcome back to the

Neurostimulation Podcast, where we

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explore the science, technology,

and evolving ideas shaping brain

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health and human potential.

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Today's guest is someone who sits at

a fascinating intersection: genetics,

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medicine, and science communication.

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Kira Dineen is a certified genetic

counselor with a master's in

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human genetics and over a decade

of experience in podcasting.

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She's the host of DNA Today, a genetics

podcast, an award-winning show that has

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helped bring complex genetic science

into clear, accessible conversations

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for both professionals and the public.

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She's also been deeply involved in

digital education through her work

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with the National Society of Genetic

Counselors, and currently practices in

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high-risk prenatal genetics, working

directly with patients and clients

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navigating some of the most meaningful

and complex decisions in medicine.

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And so in today's conversation, I'm hoping

to explore fascinating topics like what

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genetic counseling actually is, the truth

about consumer DNA testing, the promise

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and ethical tension around a fascinating

technology called CRISPR, and how genetics

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is reshaping topics like psychiatry,

mental health, identity, and even how

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we think about the future of medicine.

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Kira, welcome to the podcast.

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It's great to have you here.

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Kira: Thanks for having me on, Michael.

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Speaker: Yeah, I'm so interested

to hear about the journey.

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You've been podcasting for 14 years

now, which is rare in this space.

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And so I'm curious to know about that

story and what initially drew you

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into, the combination of fascinating

fields, genetics and science

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education, broadcasting and podcasting.

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Kira: Yeah, it's interesting.

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I started podcasting when I was in

high school, and once I figured out

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the platform a little bit, a year

after, I had a Hunger Games podcast.

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I'm a total nerd.

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and so after I figured it out

with that show, I then launched

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DNA Today, and as you said, I've

been doing it almost 14 years now.

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And it was such a great way for me

to learn about so many topics in

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genetics, different careers I could

go into, and I've stuck with it all of

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these years of, through my undergrad

degree, my master's degree, and

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practicing as a genetic counselor.

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And what I really love about genetics

is what you hinted at, that it changes

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so fast, and it's very hard to keep

up with, and I love that challenge.

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And that there is so much, so many

breakthroughs, research coming

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out that touches so many areas of

healthcare, that genetics is really

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the base of so much in medicine.

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And that creates a wonderful opportunity

for these technologies like CRISPR and for

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different genetic testing to help people

figure out their healthcare decisions,

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and yeah, genetics is just really cool.

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So I've spent my career and will continue

to spend it just talking about it.

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Speaker: Fantastic.

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Yeah, that's, that's so great.

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I think it's just, it's fascinating

because it is, as you say, it's such

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an interesting topic and it, it, it

affects so many different things, but

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it's also maybe somewhat intimidating

for folks, in terms of I can imagine,

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or even think back to some of the

genetic courses and, of course, it's

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so fascinating, but at the same time,

there's so many overlapping, there's the

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biochemistry, there's, there's all the

various different kinds of intimidating

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sort of a- a- associated topics, right?

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So maybe if we can start simple,

what i- what would you say?

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Maybe give us, help us to understand in

basic terms what is genetic counseling?

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We can start there.

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'Cause I think many clinicians,

physicians, don't really

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fully understand the scope.

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Kira: I agree with that.

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There are a lot of people that still

haven't heard of genetic counseling,

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and even if they have, they're

like, "I don't fully understand

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like what genetic counselors do."

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So- In a patient-facing role, genetic

counselors help people understand

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how genetics affects their health and

how genetic information can help them

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make decisions about their health

or their family members' health.

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So I would say that's a very

broad answer because there's

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so many different specialties.

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So, I have worked in prenatal genetics,

so talking with people that are

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pregnant about their pregnancy and

usually taking them through genetic

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testing and if they would like to

do that, everything's optional.

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What we've learned from the genetic

testing, what we can't learn from

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genetic testing, and really being their

guidance counselor through that process.

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Sort of like a guidance counselor doesn't

care what college you go to, they just

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want you to go to the right one for you,

that's essentially a genetic counselor.

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we are providing information of,

like, what these tests can offer for

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you and help you figure out what's

best for you and your family because

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just because a genetic test exists

doesn't mean that it's gonna be right

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for you, even just personally, even

if it's on paper right medically.

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Speaker: Mm-hmm.

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Yeah, that's, that's so helpful to know.

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It makes me think that it's obviously a

lot more complicated than just, Debriefing

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after a test result comes back, because

I think even having the discussion about

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should I get the test done in the first

place is probably a really important one.

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Kira: Yeah, the informed consent is

so important, and I'm frustrated as a

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provider when I hear from patients that,

"Oh, I got this genetic test and I, I

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didn't even know it was ordered," or, "I

started getting the results and I didn't

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know what they were talking about."

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It's so important for people to have

these options, be informed about

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them, what are these, and say, "I

want that," or, "I don't want that."

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Because especially in the

prenatal space, I think that's

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very important that we should…

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We can certainly offer recommendations

when it comes to different aspects that

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come up in pregnancy of like, well, what

genetic testing is recommended if you

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would like genetic testing, because there

is not a one, oh, you just do the genetic

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test, which is also a bit of a misnomer.

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There is not one test

that tests for everything.

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That would make our jobs as

genetic counselors far too easy.

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So figuring out what tool works for each

job is, is very difficult, and it's really

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essential to be able to interpret that

for patients, to be able to educate them.

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So a lot of being a genetic

counselor is really being a teacher.

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Speaker: Mm-hmm.

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Mm-hmm.

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Yeah, it makes s- it makes a lot of sense.

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The interpretation piece, that's a

word that kind of stuck out for me,

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'cause I think I wonder if there…

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Yeah, and also helping people

manage uncertainty, right?

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Because I think we all have this natural

inclination to want to be able to control

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things and predict the future and plan,

which is understandable, obviously.

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It's adaptive, but sometimes that

can go a bit overboard, and so maybe

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helping- Helping to manage expectations

is part of it, and helping people just

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to, be able to navigate that terrain

where there's uncertainty that's kind

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of baked into it, even if because of

things like false negatives, false

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positives, all that kind of stuff.

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Kira: Yeah, and there are some genetic

tests that provide risks where you say,

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"Well, there's a higher risk or a lower

risk for this to happen," and you're

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still in that uncertainty, but it's a l-

has some parameters to the uncertainty

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or a little bit more information there.

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And depending on what context we're

talking about, sometimes we like using

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language like chance instead of risk.

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When I think about the cancer space,

that's a lot of uncertainty of, okay, you

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c- you got a genetic test result back,

and sometimes what can happen is what we

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call a variant of uncertain significance,

which is a genetic change that we don't

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know if that leads the gene not to work

or if that change is just normal human

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diversity, and we just haven't seen

it enough to be able to understand it.

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So that variant of uncertain

significance puts a patient

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in a very uncertain position.

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I mean, it's in the name, right?

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So being able to have a provider that

understands this testing and how genetics

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works is really imperative because you do

have, as you alluded to, Michael, doctors

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and other healthcare providers that will

order genetic tests, and we need that.

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We need other providers to order

more tests because there's not enough

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genetic experts to order all the

tests that patients need to in the

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United States and certainly abroad.

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So we need that, but at the same time,

sometimes if the provider doesn't

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understand the results, they do need to

refer to someone like a genetic counselor.

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So there certainly is a lot of

advantages to meeting with a certified

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genetic counselor to understand

what we know from the test and

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what we don't know from the test.

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Speaker: Mm-hmm.

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Yeah, I think that, that

makes perfect sense.

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I think that's a great way to put it.

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I'm curious to know, so, so obviously a

lot of this kind of work is science-based,

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evidence-based, but there's also a

lot of emotional and psychological

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support that goes on along because

these are, these are situations where

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people have, the, the, the stakes

are high, in other words, right?

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You know, it's, it's

health-related issues.

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It's, it is just to a certain

extent, wanting to be able to

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understand what lies ahead as much

as possible in weighing all of those

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considerations that you're discussing.

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Um- To what extent do you focus in on the

emotional, psychological support piece?

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And I suppose that's kind of baked in

with the educational piece and just

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helping people understand the science.

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Kira: It's half of the title of genetic

counselor, of counseling in that sense

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of going through the emotions and,

"Okay, how are you feeling with this?"

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And navigating those emotions and

validating them and exploring them

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along with the information, and

that is quite the balancing act.

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Because if I'm calling a patient with a

result where there is a higher chance for

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a condition, I'm not gonna go straight

into, "Let me tell you all about the

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condition, let me tell you about the

next steps, let me tell you about the

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risks," and just go through the list.

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That is not helpful at all.

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Most times patients need to just

hear that there's a higher chance

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for this condition, and why don't we

talk soon or you call me back, when

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you wanna continue the conversation.

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And oftentimes it's about 20 minutes

later, patients will call back and say,

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"I have a laundry list of questions,"

but they need that time to be able

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to just absorb that unexpected news.

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And that is so important.

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Thinking about more in the neuro

space, because that's where you and

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your audience are, there's a lot of

uncertainty when I think about conditions

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In terms of how they're inherited, if

we see Parkinson's disease, Alzheimer's,

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there's a lot of these risk factors that

we look at, some of which are genetic.

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So for Alzheimer's, Chris Hemsworth

was in the news a few years ago of

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having, an APOE4 allele, and actually

having two of those alleles, which

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increased his risk and increases

his risk to develop Alzheimer's.

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Doesn't mean he will develop it, but he

has a much higher risk than, let's say,

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me, who doesn't have those E4 alleles

or that, that version of the gene.

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And so there's so much uncertainty with

a lot of the neuro conditions, and we

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have a lot to learn in terms of what

are even more and more genes that we

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know play little roles in the possible

development of these neuro conditions.

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Speaker: Mm-hmm.

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Yeah, that's, that's fantastic.

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Thanks for bringing that up because

it strikes me that there's…

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When you have systems that are so

complex like genetics and neuroscience,

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and then the intersection is then

exponentially complex, then it must be

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exponentially more difficult to kind

of make, aside from certain conditions

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where I suppose there's fif- like 50%

heritability like Huntington's, I suppose.

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But for, for most of those kinds

of, say, neurologic conditions

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where it's complicated, it's likely

a combination of environmental

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factors as well as genetic factors.

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And then you throw in concepts like

epigenetics, and then it becomes where

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the environment is interacting and

vice versa with the genetic substrate,

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then it becomes even more complicated.

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And I think part of what, one of the

ways that I kind of help to approach

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clients when there is that stress is,

is because it's, it's, it's obviously

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very difficult to manage the anxiety

that goes along with uncertainty

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about what lies ahead as far as those

kinds of conditions are concerned.

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But one of the best ways that I find to

help people navigate that is to just give

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them as much information as possible.

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Because that way, their rational mind can

kind of grab on and come to terms with it,

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and then hopefully the emotional side kind

of comes along eventually as well, right?

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Kira: Yeah, I think that's

a great approach to have.

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I grew up with my mom being a social

worker, so emotional brain, analytical

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brain, and these things that she

would refer to of, like, you can

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stay in emotional brain for a little

bit, but then you gotta switch gears,

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and being able to balance that.

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And, and sometimes that analytical part

can kind of calm the emotional part.

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It's like, oh, we have Some things

to do here, to learn, as you

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said, Michael, to like grab onto.

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And that is really helpful to feel like

you're armed with knowledge in that sense,

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and there might be steps for prevention

because we do know, certain steps, like

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Alzheimer's, of being social is one,

that especially as people get older,

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you want to be able to continue having

some kind of a social life, have support

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systems, that we see that that's so

important, not just to reduce the risk of

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developing Alzheimer's, but in general,

for lots of different health markers.

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And you brought up Huntington's disease.

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That's also one that, as you correctly

said, that is certainly has, I don't

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even want to say genetic component.

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It is a genetic disease.

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if you have a biological parent that has

it, you have a 50% chance of inheriting

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that condition, and you will develop it.

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So that one is

deterministic in that sense.

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It's not a chance.

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If you've inherited that mutated

gene, then you will develop it.

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But There's a lot of uncertainty whether

people wanna be tested or not, and I had

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the privilege of working in a neuro center

at a very prominent hospital in Manhattan

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when I was a student, so I was an intern.

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And being able to have conversations with

patients about that, it was so focused

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on the emotions of that, and is this

something that you really want to do?

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And going through psychological

conversations with providers to say,

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"Are you ready for this information?"

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So that is a whole nother aspect

to it of is this information

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going to be helpful to you?

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So I think that's something that

is, is really important to look at.

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Just because we can find out doesn't

mean it's appropriate to find

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out, and even if you do, when is

the best time in life to do that?

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Like, if you're 20 years old, maybe

not, versus, if you're in your 40s

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and making other life decisions, like

maybe is that a more appropriate time?

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Are you more mature to be able

to handle that information?

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So it definitely is, it's, it's

challenging that a, a lot of in

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genetic counseling and genetics in

general, these two come together a lot.

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Speaker: Mm-hmm.

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No, it is.

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It's fascinating, and it makes

me think of, there are so many

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ethical considerations around those

nuances that you're just describing.

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You know, is it sort of the, the timing

of finding out, the, the actual finding

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out, what does that really entail?

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And so maybe we can talk a bit about the

consumer DNA testing that's increasingly

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available, and su- super interesting.

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Of course, there's, there's a

lot to be said for people taking

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control of their own health,

being curious about themselves.

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It's not a lot different in a sense

from people exploring their, their mind

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through counseling or psychotherapy.

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They're exploring their body.

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They're exploring their heritage, right?

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I mean, I did Ancestry whenever a few

years ago, and it was really interesting

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to see the, the breakdown of the

percentage of the heritage, right?

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That just by itself is so interesting.

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But I'm curious in your experience, are

there challenges when perhaps people

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bring consumer DNA test results and

they want some sort of interpretation,

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or they, they have fears because

there's increased risk of some certain

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conditions, but perhaps they don't quite

understand the full implication of that?

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Kira: There's a time and a place

for direct consumer genetic testing.

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I think of it like a tool that

if you understand how it works

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and how it doesn't work, it can

be great, and it's affordable.

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And sometimes people will do this testing

and learn something that's helpful

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that they never would have learned or

wouldn't have learned for a long time.

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An example is that I know someone,

personally that is adopted and said,

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"Well, I wanna do this testing because

I don't know much about biological

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family members," and wanted to know

about certain health-related information

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along with the ancestry because a

lot of these direct consumers, so

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companies like you mentioned, Ancestry,

23andMe, MyHeritage, there's a lot

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of companies out there, and most of

them will do both, looking at ancestry

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and some health-related information.

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So when this individual did the

genetic testing, through one of these

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major companies, it came back that

she had a pathogenic variant or what

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people would call a mutation in a gene

related to breast cancer development.

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So basically, her risk for

breast cancer was higher, and she

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would not have looked at that.

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She was in her early 20s, so that

was not something on her radar,

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and she ended up going to her…

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mentioning it to her GYN, and they

ended up actually finding a lump

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in her 20s that she could deal with

very early and that would not have…

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It would have come up, she would

have discovered it later because she

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didn't have that genetic testing,

had she not done the direct consumer.

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So in her case, she's like, "This possibly

saved my life," and it was really helpful

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information, and because she brought it

in to a healthcare provider, she could

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validate the information that she found

and be able to have that conversation.

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The worries I have with it are when

people don't understand what it looks

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for and what it doesn't look for.

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So for this individual, the genetic

change that she had was included, but

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These companies don't read through the

entire gene that they're looking at.

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They look at hotspots of like, well,

here's a common spot where someone would

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have a mutation, and so she happened to

have one of those, but others may get a

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normal result, which is great for some

of these maybe cancer related genes

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that normally protect you from cancer.

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So if there's a mutation on one

of them, that protection's lower,

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so your risk for cancer is higher.

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And so for people that get a normal

result, they're saying, "Oh, that's great.

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I don't have any mutation in this."

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Well, you don't have one of the hotspot

or common mutations, but you could have

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a mutation that the lab didn't look at.

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So if people understand that, I think

it's a- amazing, and it's wonderful.

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I wish the education around

it was a little bit better.

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These companies have done much better in

the last 10 years of being on the market

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of, of including information and having

tutorial videos and different things

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that you have to do as you go through,

and I've done a lot of these myself over

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the years, like you, Michael, and I've

seen that the education, like you have

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to watch the video, you have to do this,

and I'm like, "That's really great."

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So there's definitely a

time and a place for it.

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Speaker: Mm-hmm.

336

Yeah, yeah.

337

S- super interesting.

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I mean, I think, yeah, the,

the, the interpretation piece

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again is, is critical, right?

340

Because I think if, obviously it's,

it's almost always better, I would

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say, to have m- more information,

be more informed, because then

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that guides things like risk factor

management as you were discussing with,

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neurodegenerative kinds of conditions

like Alzheimer's, and, equipping people

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with knowledge about themselves so

that they can manage risk factors to

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help maintain health and wellness.

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I think that's great, but I think

it's also about the interpretation

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piece so that people don't, on the

other hand, become excessively or

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unnecessarily anxious about what a

certain result may or may not mean.

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Right?

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Kira: Yeah.

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Yeah.

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I think it's, it's really important to be

able to have a healthcare provider looped

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in at some point in the process where

you can confirm information, clarify,

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and obviously there's a lot of great AI

tools in all of this and, and that can be

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another tool, but make sure that you're

researching whatever it says, and…

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Or saying, "Show me the sources that

you came up with this information,"

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of whatever AI or LLM you're using, so

that then you can actually read where

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it's coming from and saying, "Okay, I've

confirmed that that's, that's true."

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So, that's a, that's a very similar

concept where it's like this is great,

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but, make sure you understand what,

where it's pulling the information

361

from and that it's not hallucinating.

362

but having a healthcare provider at some

point in the process is, is really vital.

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Speaker: Yeah, for sure.

364

Yeah, and having that team-based approach

is, is critical I'm sure as well.

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The, the ethical considerations are

fascinating and it makes me think that

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another, specific tech- technology that

I was hoping to ask you about is CRISPR.

367

So, for viewers and listeners,

it's, it's an acronym I suppose,

368

C-R-I-S-P-R, and it sounds…

369

I mean, I know a little bit about it, and

it certainly sounds extremely interesting

370

in terms of the future of genetics, but

also in terms of these sorts of ethical

371

considerations about, when is, when is

knowledge too much or, or when does it,

372

potentially get to the point where there

may be harm associated with, with certain

373

technologies and how, how might there need

to be guardrails built around, a- access

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and applications, those kinds of things?

375

Kira: Yeah, CRISPR is so fascinating.

376

It's definitely my favorite

genetic technology, and it's

377

been so interesting to follow.

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So I started, the genetics podcast

that I run that we've mentioned

379

called DNA Today back in 2012, and

there was a landmark paper that

380

came out that year about CRISPR.

381

And if you had asked me in 2012, like,

382

of what we're able to do with CRISPR?

383

I'd say, "Well, we're,

we're, we're researching it.

384

We're trying to see, like, how we could

use this, and, maybe in my 60s," I'm 30

385

now, "we'll have, therapies using it."

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I was very wrong in an awesome way

because we actually have the first

387

FDA-approved treatment for a genetic

condition using CRISPR, and that is

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for a genetic condition called sickle

cell, which, affects the blood cells

389

and causes extreme pain episodes for

those that have the condition, and it is

390

life-threatening for, for most people,

at some point in their lives with it.

391

So huge milestone.

392

To back up of what CRISPR actually is,

so I think about CRISPR sort of like

393

molecular scissors, where we can take

the strand of DNA and cut it to take

394

out the piece that is misspelled and

bring in a different piece that has

395

the correct spelling and put that in,

and then use a little bit of tape and

396

tape it back up so that we're basically

swapping out a gene or part of a gene for

397

another one and correcting that mutation.

398

So that sounds very simple, and in a

lot of ways, it is much simpler than

399

other genetic editing technology, and

that's why it's Been able to be used

400

in all of these really cool ways.

401

And it's just amazing how many clinical

trials are going with this new technology.

402

I say new, but it's, it's

been around for a while.

403

We discovered it decades ago,

and have adapted it to be able to

404

use it potentially as, for these

treatments, and it is just remarkable.

405

We're gonna keep seeing more and

more FDA-approved treatments for

406

genetic conditions using this

technology, and it's, it's really

407

changing the face of gene therapy,

especially compared to where we were

408

in the late '90s with gene therapy,

and we had a lot of setbacks then.

409

So, now, 25 years later, almost

30 years later, it's very, very…

410

I don't even wanna say promising.

411

Like, it's already delivering.

412

Speaker: Hmm.

413

Yeah, that's, that's awesome.

414

And I guess perhaps the technology like

the LLMs and the AI, as you say, maybe

415

that can be an accelerating factor

also that allows for the research

416

to be just kind of like, uh, really

accelerated is probably the best word

417

in terms of how to get the research

from the lab into clinical practice.

418

I was speaking of Huntingtons, I

was understanding that, that there

419

is a promising genetic therapy, on

the horizon for Huntingtons as well.

420

Kira: Very promising.

421

It's, it…

422

When I saw that in the headlines, I

don't know if you link things in the

423

show notes, maybe we could do that, of

it's just phenomenal that we may have a

424

treatment that is going to drastically

slow the progression of Huntingtons, and

425

this is a condition we've mentioned that,

affects people, like, early-ish on in

426

their lives, and completely devastating.

427

So to have CRISPR being able to be

used for such severe conditions, I

428

was able to interview the first person

that is asymptomatic from sickle

429

cell using this CRISPR treatment.

430

Her name is Victoria Gray, and it

was such a privilege to be able

431

to talk to her of being the first

person that had this, and it was

432

many years ago now because she was…

433

Obviously, if she was the first, she

was in the clinical trial, and she

434

doesn't have any symptoms anymore.

435

So we, we're careful about using the term

cure, but for her, she is asymptomatic,

436

and it completely debilitated her life.

437

She's got four kids, and she can

now be a physically active parent

438

with them and travels and speaks

about this, and it's just amazing to

439

see just how it's changed her life.

440

Multiply that by everybody that's

going to benefit from this.

441

And I talk about it like it's this

magic wand that we just wave and we,

442

you know, fix all of these symptoms.

443

It's not.

444

It is a very intense procedure

to be able to get the CRISPR

445

treatment if you have sickle cell.

446

it's taking your bone marrow out and,

as I kind of say, CRISPRing up the cells

447

to basically, genetically edit them

and then putting it back in the person.

448

And so when you don't have…

449

When your bone marrow is sort

of empty, getting a cold can be

450

life-threatening because you don't

have an immune system at that point.

451

It's not working.

452

So in order for someone to say, "I'm

going to go for the CRISPR treatment for

453

sickle cell," they have to be at this

point where they're sick enough for it

454

for this to make sense, but healthy enough

to be able to withstand that process.

455

So it's not as easy as taking a pill or

a shot or anything that straightforward.

456

So as amazing and as wonderful as

it is, it's still very involved when

457

it comes to actually getting the

treatment and the decision to do that.

458

Speaker: Mm-hmm.

459

Yeah.

460

Yeah, that's, that's very helpful

to get that explanation just so that

461

puts it into context for people, but

it's still super exciting, obviously.

462

I'm curious just some of your thoughts

around the importance of guardrails and

463

the potential for, I, I, I don't know

if abuse is the right word, but the

464

potential for exuberance to lead p- p-

perhaps in, in not so great directions.

465

I mean, you hear in popular press

about things like cloning and this

466

question about maybe are, are things

like designer babies in the future,

467

their potential for genetic engineering

to kind of go wrong in that sense.

468

Do, do you feel that there's a bit of a

risk of those kinds of things arising?

469

Kira: Very much so a risk.

470

We saw at the end of 2018 a doctor, who

I purposely don't say the name of, use

471

CRISPR to edit embryos, so just as you're

alluding to, with sort of, I wouldn't

472

quite say designer babies because usually

that is more like aesthetic reasons,

473

and that's what's surrounding that term.

474

But genetically edited embryos and

transferred those, and there were at

475

least two pregnancies, one of them

twins, and announced that he did this

476

and that, the babies were alive and well.

477

and he was saying this in

a way that he thought…

478

The way he was saying it

was like a celebration.

479

"Look at this milestone in science."

480

Certainly was a milestone in science,

but not in a positive way from my point

481

of view and a lot of other scientists

because there's this difference between

482

editing cells in someone, or taking

their cells, editing, and putting them

483

back in them, versus editing an embryo.

484

The biggest difference is that when you're

editing an embryo, you are now editing

485

what will become their sperm and eggs, or

eggs, and affecting future generations.

486

Going back to Victoria Gray, if

she were to have more children, her

487

eggs were not affected at all when

it comes to the genetic editing.

488

So if there are any issues that

arise with genetic editing,

489

it stops with that person.

490

But when we edit embryos, we are now

introducing this into the population

491

Let alone, what if something

goes wrong and there's medical

492

consequences for this embryo that

becomes a baby that becomes, an adult?

493

So that is the biggest aspect when

we talk about germline editing, so

494

editing eggs, sperm, embryos, versus

somatic cells, which are, cells

495

that are not part of reproduction.

496

And it is really scary.

497

this doctor was put in

jail, prison for years.

498

I saw headlines last couple

years, he was released.

499

So this is something that the

scientific community, mostly

500

worldwide, was appalled at.

501

And It's something that is very scary in

terms of there not being enough guardrails

502

with this, especially when you think

about countries have different laws.

503

Even if in the United States there's

certain laws, or Canada, it doesn't

504

mean there are in other countries.

505

So will we start seeing medical

tourism of, "Oh, I wanna have a baby.

506

Let me go to this country so that they

can edit the embryo to have certain,

507

physical attributes or intelligence

and these other, other things."

508

So it is something that really concerns

me, not just if everything goes well with

509

that, of what happens in society when

people that can afford it can do this, but

510

also what we consider off-target effects.

511

So where you say, "We're gonna target

this gene to change it," but what if

512

you accidentally change other genes?

513

So that's something that we just,

we're, we're not there yet in terms

514

of being confident and not having

those off-target effects, and then

515

the ethical components, as you said.

516

Speaker: Mm-hmm.

517

Mm-hmm.

518

Yeah.

519

No, thanks for explaining all of that.

520

It does, I mean, it, it, in, in some ways,

it makes me a little worried about, like,

521

a science fiction kind of possibility.

522

And again, even, even the basic,

like, concept, like, informed consent

523

for that embryo, obviously, right?

524

And then what are you setting up that

individual for in, in their life?

525

And, but yeah, I'd never really thought

about the implications in terms of

526

future generations and changing the…

527

I, I mean, yeah, that's…

528

It, it's fascinating when you think

about that, and quite scary, so there

529

definitely has to be some regulation

around this kind of thing, right?

530

And I guess the, the, the challenge is

gonna be if, if there is the financial

531

incentive, then h- how do you kind of

regulate that and control that properly?

532

But it is interesting to hear about

that that individual was actually

533

jailed, because I guess at the end of

the day, the law will have to be one

534

of the factors that tries to make sure

that those guardrails get enforced,

535

it's just so that everyone, and

particularly these affected individuals,

536

stay safe as much as possible.

537

Kira: And there are organizations

that many countries are a part of that

538

basically set, like, international

guidelines, but they're guidelines, right?

539

We can't say, "This is a law

for every human on the planet."

540

That's not how our society as humans

work, so it- We're, we're gonna

541

just kinda see how it continues.

542

I'm, I'm surprised in the last eight

years that there hasn't been more

543

scientists like him announcing, "Hey,

I did this," and doing it in a country

544

where maybe that's not illegal.

545

so that's good.

546

Like, I don't wanna see those

headlines, but I'm a little surprised

547

we haven't seen more of those headlines.

548

So, I think inevitably we will.

549

Speaker: Mm-hmm.

550

Yeah, yeah.

551

I was thinking as well earlier when we

were talking a bit about, you know, how

552

genetic testing can help identify risk

factors and can just equip someone to

553

best, focus in on certain risk factors

that they may wanna fo- uh, try to

554

minimize by lifestyle adjustment or

various other strategies like that, and it

555

made me think that, a family history, like

we're all taught as clinicians to really

556

take a family history as part of an intake

assessment, which is understandable, but

557

in so many ways I often find that it's,

it's not, it's not attended to as much

558

as it perhaps should be, or people just

don't know, right, which is very common.

559

and so I always thought that it would be

so much better for people if there was

560

just more discussion within families and

more awareness that people would have of

561

their own family history of illnesses,

and how the genetic testing can just

562

really supercharge an understanding of

family history so that people can then

563

understand, oh, okay, well, I have quite

a significant family history of this

564

kind of illness, and so that means I

should adjust my lifestyle in this way.

565

and I think especially for, say,

mental health, psychiatric challenges,

566

because classically the consideration

is that for most psychiatric conditions

567

it's a combination of genetic

factors and environmental factors.

568

so I'm curious, y- so say something

like bipolar disorder for instance

569

is quite well known that if there's

a strong family history of bipolar

570

disorder, that increases the risk for

bipolar disorder in any of the, family

571

members who have not been diagnosed,

up till a certain age, I suppose, where

572

there's a window of vulnerability.

573

So maybe if you can talk a little

bit about mental health and the

574

considerations like that in terms of the

overlap between genetic predisposition

575

and environmental factors in any

particular condition that comes to mind.

576

Kira: It is important to think about that

combination of genetic predisposition,

577

of what genes did you inherit, of what

versions of those genes, and then also

578

environmental triggers and factors there.

579

It really is that, that combination.

580

There's that concept nature verse nurture.

581

We gotta get rid of the verse.

582

It's and, nature and nurture.

583

When it comes to this,

there's a great analogy.

584

I think I want to

attribute it to J9 Austin.

585

I might be wrong there,

but they use it a lot.

586

they are like the psy- psychiatric

genetic counselor in the space,

587

actually based in Vancouver as well.

588

And it's this analogy where

you have an empty jar.

589

You have marbles poured in that's

maybe half the jar for someone,

590

and that's what you're born with,

your, your genetic predisposition.

591

And then you have some

environmental things.

592

You, you have different life

events, stressors, traumatic

593

experiences that add more marbles.

594

Once you have marbles overflowing

in the jar, that's when you have

595

your onset of your condition.

596

So for some people, they may have their

jar with just a few marbles to begin with.

597

They don't have a lot of predisposition

And then they have a ton of experiences

598

in life that all of a sudden they're,

they're overflowing, and so they end

599

up having a mental health condition.

600

And then you can have someone else

that their jar is really full from

601

the beginning, and it only takes a

little bit to, to have that diagnosis.

602

And so that I find is a helpful

way of visualizing it because

603

it really does depend for people

of what that combination is.

604

I did my master's thesis project

on schizophrenia, and it is

605

fascinating that I was doing this

606

Mm-hmm.

607

And back then, and probably even

more so now, there were identified

608

hundreds of genes that can play a role

in the development of schizophrenia.

609

And we see similar to bipolar

disorder that if you have someone

610

with schizophrenia in your

biological family, you are at higher

611

risk of developing it yourself.

612

And we also see with schizophrenia that

people present very differently too.

613

So is there a correlation between certain

genes having variants where leading to

614

certain presentations of schizophrenia?

615

There's a fascinating book, I don't know

if you've read it, Michael, or seen the

616

documentary, Hidden Valley Road, um- Yeah

617

about a family.

618

It's really great.

619

HBO, adapted it into a documentary

series called Six Schizophrenic Brothers.

620

And it follows an Irish Catholic

family living in Colorado

621

that has 12 full siblings.

622

Six of them, as the title

suggests of the documentary, were

623

diagnosed with schizophrenia.

624

And the genetics is interesting.

625

I don't wanna give away kind of what

they were able to discover there.

626

But what was also interesting is that

the six brothers had very different

627

presentations of schizophrenia.

628

and I was able to interview one

of the children, the youngest

629

child from that family that's been

involved in her brothers' care.

630

and it's just, it's an example

of genetics playing a role in

631

the development of the condition.

632

But it's a lot of these neural conditions,

maybe all of them, we really don't

633

fully understand what's leading to it.

634

I think the Huntington's disease

that we mentioned is the outlier in

635

terms of maybe that's the one or one

of few conditions that we understand

636

the genetics and the development of

how does this condition come to be.

637

Speaker: Mm-hmm.

638

Yeah, yeah.

639

Thanks for that.

640

That's, that's really interesting.

641

I'll definitely check out that,

the book and the, the, the, the

642

series that you're mentioning there.

643

Sounds so interesting.

644

I'm also wondering for viewers and

listeners who maybe are students or

645

early career clinicians and thinking

of branching out, what advice might you

646

give someone who's considering a career

in genetics or genetic counseling?

647

Kira: Yeah.

648

I mean, first, go for it.

649

I mean, I'm biased, but I think genetics

is such an interesting field because

650

as the conversation that Michael and

I have had, like it just spans so

651

many different areas and nuances,

and the ethical components are so

652

fascinating when it comes to like how

does this really impact human beings?

653

When it comes to genetic counseling

specifically, it's such a rare opportunity

654

as a healthcare provider to be able

to be booked with time to speak and

655

converse and spend time with your patient.

656

Most of the time when you're a

healthcare provider, aside from I would

657

say, social workers and more of that

therapy-based, of that talk therapy-based,

658

most of the time appointments are

like 10, 15 minutes if you're lucky.

659

And when I was seeing patients I was

booked for 60 minutes with patients,

660

and we often didn't use the whole time,

because a lot of people were coming,

661

to get information about the genetic

testing and th- and there were no like

662

red flags or anything really to dive

deeper into with their pregnancies.

663

But for those that something did come

up, it was really helpful to have

664

that time and not feel rushed, and

you don't have to cram all of the

665

information into this tiny window.

666

You can let it breathe and, and talk

about the emotions surrounding that

667

and how they're feeling about this.

668

Is this something that they want to

consider or book another time to talk?

669

And just that privilege to be

able to talk to your patients and

670

not be rushed is really amazing.

671

And that's not every genetic

counselor's experience.

672

Sometimes you are booked for a half hour.

673

But even that is sometimes triple

or quadruple the amount that other

674

healthcare providers get with patients.

675

So I think it's…

676

If you're in that patient-facing

role, genetic counselors do a lot,

677

but that's one type of job genetic

counselors can do, and you can really

678

make a lasting impact on someone.

679

Of what would be my day in the clinic,

some of the patients I had are, were

680

gonna remember that conversation forever,

depending on what we talked about.

681

So it really is an opportunity to

have such a impact on someone's

682

life in, in a deep meaningful way.

683

Speaker: Mm-hmm.

684

Yeah, I'm sure it's so rewarding and,

and also so, interesting because of

685

the m- m- the ability to be able to

just bring people into a space where

686

they can understand the complex,

intimidating science, and that can

687

be made digestible and, and, and

understandable, but also like you

688

say, providing the emotional support.

689

It's really, really heartwarming.

690

Kira: Yeah.

691

And I would also add that- On DNA

Today, the podcast I run, we started a

692

mock genetic counseling session series

where we bring in board-certified

693

genetic counselors to play themselves.

694

We have graduate students that

are genetic counselors in training

695

design the whole case, overseen

by myself and the other genetic

696

counselor, and they play the patients.

697

Because, you mentioned the

organization, the National Society

698

of Genetic Counselors, they have an

awesome series to this, and, and the

699

genetic counselors that are in this

are wonderful, and the psychosocial

700

components are great to learn from.

701

But the series is about 10 to 15

years old, so a lot of the genetic

702

parts of the testing are, are not

up to date, and I didn't see another

703

series available for our students.

704

So I said, "You know what?

705

I think we should probably produce this."

706

So over the last almost two years, every

so often we release a new installment,

707

and it's just on the podcast feed, but

all of them so far have been recorded in

708

person so that you're really capturing,

like, what does that look like?

709

What does a genetic

counseling session go…

710

Like, how does it go?

711

So we've done prenatal, pediatric,

cancer, cardio, and hopefully in the

712

future we'll do a neuro installment.

713

And I find that it's a really great way

for people to learn and see, okay, is,

714

is this a job I can see myself doing?

715

So if someone is listening to this coming

from the more student or early career

716

perspective, that might be something to

check out if, if this is fascinating and

717

you've made it to the end of the episode.

718

Speaker: Totally.

719

That's, that's so inspiring

and such a great idea.

720

That's, that's awesome.

721

Yeah, I would definitely encourage

listeners and viewers to check that

722

out specifically within the podcast.

723

And speaking of the podcast, I was hoping

to, and, and you'll have to indulge me

724

because there's selfish reasons for this,

because I'm hoping to learn from you

725

as much as I can in this next segment.

726

But I've been curious because you've

built a long-running successful podcast.

727

What…

728

Perhaps you can share a little bit about

what you've learned about communicating

729

complex science effectively for people.

730

Kira: Sure.

731

Yeah.

732

It's certainly been something I've,

I've just been learning as I go.

733

If I, people say, "Oh, I started

listening to your podcast."

734

I was like, "Oh, do you

remember what episode?"

735

They're like, "Episode one."

736

And I'm like, "Oh my God."

737

Like, that's kind of the equivalent

of, like, having someone say,

738

"Yeah, I started looking through

your photos from middle school."

739

And you're like, "Oh, no."

740

I've learned a lot in the process.

741

I think one of them is to be really

consistent releasing episodes, I think

742

just in terms of growing a podcast.

743

When it comes to the communication, I

think it's one of those things that you

744

just keep doing it and getting better at.

745

I find using analogies when I

can is helpful, especially for

746

audiences where they're learning a

new concept or a new angle to that.

747

And knowing that if a guest is talking

about something that's starting to

748

get over my head, I know it must

be getting over listeners' heads.

749

because I, myself, am basically my

target audience of people that are

750

working in the healthcare space, and

usually with a, a genetic tie to it.

751

So I will certainly say to a

guest, like, "Okay, so you're…

752

Am I getting this right?"

753

And it's actually helpful when they

say, "No, that's not what I mean."

754

And I'll keep that in the episode

because if I was incorrectly thinking

755

that, listeners probably were,

too, and then I'm helping them.

756

So I think really having the guest

shine as much as you can, and as you've

757

you've done for me, Michael, so that you

can really capture that and not being

758

afraid to be like, "I don't know this."

759

that's certainly something I've

learned a lot in my career so far.

760

and I've been able to help a lot of

other podcasters because, a year ago

761

I launched, a science podcast network

called Gene Pool Media, and it's been

762

really great to help smaller podcasters

in science be able to help support their

763

show, get their first few sponsors,

and riding on the coattails a little

764

bit of, of DNA Today and everything.

765

so if people are interested in,

this show, DNA Today, like, there's

766

a lot of other science shows

that are awesome on the network.

767

Speaker: Fantastic.

768

That's, that's incredible.

769

That's really so inspiring and, and

I'll definitely check that out too.

770

I'd encourage everyone else.

771

I'll put links in the show notes for

sure to all of these various different

772

things that you've been talking about.

773

So maybe to wrap up, maybe you can

let us know what in particular might

774

be really exciting you most about the

future of genetics that you envision

775

over the next, say, 10 to 20 years?

776

Kira: I think a callback to something

you mentioned earlier would be

777

utilizing AI learning language

models and what we can do with that.

778

Genetics leads to big data sets.

779

When we think about just the human

genome, that's a lot of information.

780

And so to be able to source through that

in an efficient and quick way, that's

781

kind of what AI's really good at, is

looking at patterns, looking at outliers,

782

and assessing these big, big data sets

that take humans a very long time to do.

783

And we're already starting to see this.

784

There are companies that are doing a

great job at ethically using AI and

785

having it speed up the process for

genetic experts to be able to use.

786

One aspect within this is,

like, prioritizing variants.

787

So basically if we're doing, a test

where we're looking at a lot of genetic

788

information, something called a whole

exome or whole genome, it's like

789

where do we start looking at the data?

790

And so for the AI to be like, "Hey,

we think you should start with these

791

three spelling changes or variants,"

what if in that top three or five or

792

top 10, the causative variant or what's

leading to the symptoms is discovered?

793

That saves so much time, and then

that ends up helping the patient

794

in getting that diagnosis quicker

and maybe an available treatment.

795

Mm-hmm.

796

So the use of AI is, is exciting and

scary, very similar to CRISPR, as we

797

were talking about, but I think there's

a lot there that it can speed up the

798

advancement of being able to use these

technologies in, in diagnosis, in

799

treatment, in all of these different ways.

800

So I'm continuing to do episodes

about this and really seeing

801

where it's headed and, and how we

can use it in this ethical way.

802

I think that's the highlight.

803

Use it as a tool, and not to replace,

geneticists and bioinformaticians

804

and, and all of our work.

805

Speaker: Mm-hmm, mm-hmm.

806

Yeah, and maybe if, if I might…

807

I had a little analogy, as you mentioned

just now, come to mind, and maybe that

808

would be that if, if, if, if whatever

genetic question that is being asked

809

or puzzle that is being attempted, that

people are attempting to solve is kind

810

of like finding a needle in a haystack,

that maybe the AI would be kind of like

811

having a metal detector that we can

use to kind of just zone in on where

812

the needle is exactly before having

to just, yeah, struggle and spend all

813

the time and effort to try and find it

with, without that kind of technology.

814

Kira: Yes.

815

I love that.

816

And then for us to actually look at

it and be like, "Is it a needle or

817

did it just pick up a paper clip?"

818

And then you're like, "Wait a minute.

819

A good try, but not quite," right?

820

So we still need that human step to

verify, yes, this is what we have found.

821

Speaker: Cool.

822

Well, that's, that's great.

823

Well, what a great way to end.

824

Very optimistic and, yeah, lighthearted.

825

It's just fantastic.

826

Kira Dineen, this has just been

such a fantastic conversation.

827

For me, what stands out here is that

I think we really touched on that

828

genetics is not just about code.

829

it's not just all about just…

830

Although it is about complex,

it's not dry science.

831

It's about really, nuanced things like

interpretation, uncertainty, ethics, and

832

ultimately human meaning and wellness.

833

And so it's so interesting because this

is where fields like mental health,

834

psychiatry, and genetic counseling

really do intersect in interesting ways.

835

So Kira, again, thank you so much

for bringing both clarity and nuance

836

to what is sometimes a misunderstood

area of health and medicine.

837

and for viewers and listeners, again,

if you wanna learn more, I would highly

838

recommend checking out DNA Today, a

genetics podcast, as well as, what was the

839

network of other science podcasts, Kira?

840

Maybe you can just remind us

of the title of that as well.

841

Kira: Gene Pool Media.

842

Thank you, Michael.

843

Speaker: Right, and Gene Pool Media.

844

So together these are one of

the best resources out there for

845

making science accessible and

engaging, particularly genetics.

846

so thanks again, Kira.

847

I really appreciate your expertise

and your passion for this topic,

848

and, just congratulations on your

podcast and wish you all the best

849

with all your future projects.

850

Kira: Thank you so much, Michael.

851

You're such a wonderful,

insightful interviewer.

852

You made the time just fly by.

853

So thank you so much.

854

Speaker: That's great.

855

Yeah, I really enjoyed it.

856

Well, it'll be good to keep in

touch and, yeah, I'm definitely

857

gonna check out the podcasts in your

podcast and the network as well.

858

I'm looking forward to it.

859

Kira: Awesome.

860

Thanks, Michael.

861

Speaker: Take care.

862

Thanks a lot.

863

Bye-bye.

864

Kira: Bye.

865

Speaker: And if you've enjoyed this

episode, please remember to like and

866

subscribe and share it with someone,

who might also be interested in this

867

fascinating topic and the future of

medicine, genetics, mental health, brain

868

health, general health and wellness.

869

And as always, until next time, And

don't forget to tune in to the next

870

episode of the Neurostimulation Podcast.

871

It's gonna be another fascinating

exploration into the future of

872

neuroscience, clinical neurostimulation,

interventional mental health,

873

general mental health and wellness.

874

So take care, stay curious,

and I'll see you next time on

875

the Neurostimulation Podcast.

876

Thanks again for joining.

877

I really appreciate your time,

your interest, and your attention,

878

and we'll see you next time on

the Neurostimulation Podcast

879

Mike: Thank you so much for joining me

today on the Neurostimulation Podcast.

880

I hope that you enjoyed this

conversation as much as I did.

881

If you found today's episode

interesting, don't forget to like

882

and subscribe to the podcast.

883

It's the best way to make sure that you

never miss an episode, and it also helps

884

us to reach more curious minds like yours.

885

Also, if you think that today's

episode might resonate with a

886

friend, a family member, or a

colleague, please share it with them.

887

Knowledge is better when it's shared,

and you never know who might find this

888

kind of information helpful or inspiring.

889

For more details about the kind of

things that we talked about today in

890

this conversation, please check out

the links in the show notes below.

891

You'll find everything that you

need to dive deeper into this topic.

892

And I would love to hear your

thoughts, so please join the

893

conversation in the comments section

or reach out to us on social media.

894

Your questions, ideas, and

feedback make this podcast better.

895

Finally, don't forget to

tune into the next episode.

896

It's going to be another exciting journey

into the cutting edge of neuroscience.

897

Thanks again for listening.

898

Take care, stay curious, and I'll see you

next time on the Neurostimulation Podcast.