Episode Transcript
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Speaker 1 (00:02):
Hey everyone, welcome
to the Inflammation Nation
podcast.
I'm your host, Dr SteveNoseworthy.
Speaker 2 (00:08):
One of the greatest
obstacles to crafting health and
wellness is identifying andcontrolling inflammation.
It's at the core of all complexand chronic diseases and it's
the driving mechanism thatunderlies the most common
symptoms that people like youstruggle to overcome.
Join us as we explore cuttingedge science and research to
give you the information andtools you need to create the
(00:28):
quality of life you want anddeserve.
And now here is the host ofInflammation Nation, dr Stephen
Nosworthy.
Speaker 1 (00:37):
Hey guys, welcome
back to the podcast.
Today I've got a special guest,and this podcast episode is
going to be presented on boththe Inflammation Nation and the
Funk Med Nation podcasts, simplybecause there's going to be
information here for generalhealthcare consumers as well as
functional medicinepractitioners.
(00:58):
Today we're going to be talkingabout predictive genetic
testing, and my guest, who willbe on here shortly, is Dahlia
Atiyah King, and she is thefounder and CEO of Panacea,
that's a genetic testing company.
She's got a BS in biology andchemistry from the University of
Miami and she's got experienceworking for genetic laboratories
(01:21):
, which exposed her to thereality that very few people
were able to access valuablepreventive genetic testing, and
she learned very quickly thatthe lack of insurance coverage
for genetic testing and thusphysician hesitancy to order
testing were some of the mostinhibitory barriers.
She then had an additional sixyears in healthcare technology,
(01:46):
and that's where she learnedabout the innovative solutions
that could push healthcare intoa much-needed era of
modernization.
And, after embarking on amulti-year journey to further
unravel the complex reasons forgenetic testing underutilization
, she met Dr Hinko Gehrhrman andthey were inspired to create a
solution which is panacea.
So panacea was founded with amission to reduce barriers to
(02:11):
access or access, I should say,clinical genetic testing, so
that people can get in controlof their health and prevent
disease, which is completely inline with my thought process.
Panacea now offers residents ofalmost every state in the US
the ability to receive at-homeclinical genetic testing called
whole exome sequencing.
We'll be talking about whatthat means and also access to
(02:34):
expert medical guidance in justa few clicks, empowering people
to potentially save their ownlives.
And with that introduction,here's my conversation with
Dahlia Atiyah King.
All right, so I sent you thosequestions, yeah, and so when I
put those questions on, I'mreally coming at it from the
(02:55):
perspective.
I have my own questions that Iwould like answers to.
If you can answer them, yeah.
And I also try to put myself inthe position of, say, either,
in our case, with thisconversation, because I'm going
to post this on both of mypodcasts I try to sit in the
position of a healthcareconsumer who knows that they can
(03:18):
get genetic testing done, andalso a healthcare practitioner,
and most of the people thatlisten to the podcast I mean,
it's called Funk Med Nation, somost of us are functional or
integrative medicinepractitioners and that could be
a medical doctor, chiropractor,acupuncturist, whatever and I'm
not, I don't know.
(03:39):
I guess we're just going to rollinto the conversation, right.
So good thing we're recording.
But I don't know if you'reaware that in our space I'm sure
you are, but in our space ofnatural medicine there are a lot
of companies that are marketingto providers like myself that
say we can do genetic testingand, you know, give you the
(04:00):
optimized nutritional supplementprotocol and tell you what kind
of exercise you should do andthe kind that you should stay
away from, and all this kind ofstuff.
And and, uh, you know, let what?
Did?
We save that question or thattopic for a little bit later?
Um what I would like to do isstart from the very big picture
and then kind of winnow down tosome of the more details and
(04:23):
obviously eventually get to thework that that you're doing with
panacea, sure, and the storyabout how that came about.
So why don't we start with?
Let's start with the healthcare consumer in mind sure and
yeah, so yeah, go ahead, juststart talking before we really
get into it.
Speaker 3 (04:43):
you sent some really
awesome topics here.
I just got an opportunity toquickly glance at them.
I don't I don't know if I'll beable to answer every single one
of these questions in depth.
I mean, this is this isincredibly thorough.
You certainly did your job inin digging deep in here, so
(05:04):
there might be some things Iwon't be able to really dive
into.
Speaker 1 (05:08):
Yeah, and that's
totally fine.
Speaker 3 (05:10):
Go ahead and ask your
questions and, of course, if
there's something I can't reallydive into either, because I
don't fully have a goodknowledge base about it, or
whatever we can.
Speaker 1 (05:20):
Yeah, and this is
like of many topics that we
could talk about in the field ofnatural medicine.
When you start talking aboutgenes and genetic testing.
It's perhaps on the morecomplicated side, Right.
Speaker 3 (05:35):
It is Absolutely.
It's dense and it's boring andit's not always very clear
either.
Right.
Like we don't really know.
We know very little aboutgenetics actually and how they
play a role in our health, butanyway, so we'll, we'll
definitely get into that um Iwanted to also ask you a
question, and I totally forgot.
Speaker 1 (05:54):
that's all right,
it'll come back to you.
So why, why don't we start withthat, that concept, like we
don't have it all figured outyet?
I get the sense that a lot ofhealthcare consumers, and
certainly doctors and I knowthis because I, you know, talk
to hundreds of doctors everyyear in seminars that I teach
settled science that with thecompletion of the human genome
(06:17):
project 20 or so years ago, thatwe have genes totally figured
out and like how do you, howwould you have a conversation
with somebody who has thatbelief and help them to
(06:40):
understand things?
That maybe is based a littlebit more in reality.
Speaker 3 (06:47):
It's, it's a, it's a
good, it's a good point and it's
a good perspective, I think.
I think we really have barelyscratched the surface when it
comes to understanding geneticsand you know how they play a
role in our health.
We've certainly learned a lotright, and science is never
(07:09):
actually settled right.
Science is constantly changingand we're constantly growing our
knowledge base and building ourknowledge base.
The good news is that, I think,when it comes to genetics,
there's there's a few things weunderstand and those things,
fortunately, we sort ofunderstand pretty well, right,
(07:31):
Pretty confidently.
There's a handful of genes thatplay a role in specific
diseases, like certain cancerscertain cardiovascular
conditions and certainneurological disorders,
alzheimer's.
And when you know a patient getsa genetic test and they may
(07:52):
have a known mutation in one ofthose genes, we kind of have a
good grasp on what canpotentially be done for this
patient to reduce their risk ofdeveloping these problems.
If you're doing genetic testingfor prevention which frankly is
the most powerful way to usegenetic testing is to sort of do
(08:16):
it before an individualdevelops a problem, before they
are sick, so that you canhopefully reduce their
opportunity of becoming sick or,in some cases, eliminate it
completely.
When you're using genetictesting for an individual that
is already sick, for example anindividual that might have a
specific type of cancer, thepower of understanding the
(08:40):
genetic makeup of thatparticular individual is it can
help identify what therapieswill work to treat the disease
that that patient isexperiencing.
So in those cases, in thoseareas where we have a pretty
deep and wide knowledge ofgenetics and an understanding of
what they're doing, genetictesting can be really really
(09:03):
powerful because we sort of havea grasp on what's going on
there.
There's still so many areas, asyou said, where we don't know
what genes are doing and howthey're playing a role in our
health or in our diseasesusceptibility, and that area is
constantly growing.
And the more data we have andthe more people that get tested
and the more people that arewilling to share their
(09:25):
de-identified data, the more wewill begin to understand what
exactly our genes are doing andhow we can use them to kind of
keep us healthy.
Speaker 1 (09:36):
Yeah, and so I think
just in that little monologue
there, you identified severaldifferent roles that genetic
testing can play right.
One is the predictive part,which I hope we get a chance to
talk more about.
The other, the other is the,the diagnostic Um and, and that
could be identifying existingdisease conditions or, as you
(10:00):
mentioned, testing for eithersuccessful therapeutics, which
may include uh pharmacogenomics,right.
How you?
respond to different drugs.
Um, does the kind of testingthat you're doing and and maybe
maybe this question is um alittle bit outside of the entity
of panacea and the work thatyou're doing and just in the in
(10:23):
the realm of genomic testing ingeneral, what about
susceptibility testing, forexample, if you have
estrogen-responsive tumors orsomething else, do you guys get
into not just testing humangenomics but testing the disease
entity itself, if that's eventhe right way to phrase that?
Speaker 3 (10:47):
Yeah, so we mostly
focus, our core focus as of
today.
Right, we always can expand andwe have of course ideas for our
future.
Exactly Today, our core focus ison preventative genetic testing
in order to help identify whatyour inherited disease
(11:11):
susceptibility looks like, right?
So you inherited genes from momand dad at the point of your
conception and those particulargene combinations are what we're
looking at.
We want to know what your riskfor developing certain things
like, like I said, differenttypes of cancers and
(11:31):
neurological disorders and allkinds of cardiovascular
conditions and what have youright?
We want to know what the riskfor you really is over your
lifetime because of the genecombination that you inherited.
This doesn't include theeffects of your environment on
your genes.
(11:51):
It doesn't affect the effectsof your lifestyle on your genes.
This is solely your inheritedrisk, basically, the risk that
you you know sort of are justdealt right.
These risks are nothing thatyou could have changed, nothing
that your parents could havechanged.
(12:13):
It's just the cards that youwere dealt right.
The good news is is that whenyou understand where your risks
are, when you can see the cardsthat you've been dealt, you can
work with your healthcareprovider in order to create a
specific, targeted healthcareplan so that you can address
(12:34):
those very specific risks andreduce the likelihood of you
developing a problem.
It's almost like a littlecrystal ball right when you can
look in and you can see thiscould be my future and these are
the cards I've been dealt andthis is what I can do in order
(12:55):
to you know, sort of get a holdof my future, right.
So that's, that's really.
So.
That's really the power ofpreventative genetic testing
when you focus on yourhereditary disease risks.
Speaker 1 (13:28):
Do you think that we
have a solid handle on?
Speaker 3 (13:30):
what percentage of
total or real risk someone's
genetic profile presents for themore common things like cancers
and heart disease.
Yeah, I think that area iscertainly still quite nascent
and still needs a lot of growthand development.
And, again, the more data wehave and the more you know um
research we do, the more weunderstand these things.
But it's still um, it stillneeds needs a lot of work.
(13:53):
But there are a lot of areas,like I said, where we're pretty
confident because we have plentyof data to support those areas.
For example, um, I'm sure peoplehave heard of the BRCA gene
right, brca1 and BRCA2.
The BRCA genes are really wellresearched and there's a lot of
(14:13):
data to support the percentageof elevated risk that an
individual may have if they havea specific mutation right In
the BRCA1 gene or BRCA2 gene.
And so if you are an individualthat has a mutation in the BRCA
gene, the percentage is prettyconfident, right?
(14:37):
We know that specific mutationscan make somebody 80% more
likely to develop breast cancerin, in some cases, ovarian
cancer, right, and so thosespecific, very well studied
genes allow us to kind of, youknow, offer these pretty solid
percentage risks, riskpercentages.
(15:00):
There are some other genes thatare also well researched, but
maybe not as well-researched,and so we don't really fully
have a solid understanding ofwhat the genetic predisposition
might particularly yield for apatient.
But again, more data and morestudies go into this all the
(15:22):
time, and with things likegenetic testing, there's also a
lot of AI that's beingintroduced in order to correctly
analyze and offer betterpredictions of what a particular
mutation might offer and whatdifferent mutations,
(15:42):
collectively, right pulledtogether, might also yield.
Speaker 1 (15:45):
Yeah, and that's
exactly what I was thinking as
you were talking is that, andobviously, the more variables
you put into some kind of anequation, the more complicated
or the more difficult it is toend up with results in some kind
of a study that you're reallyconfident in.
And so I don't know that scienceis at the point where it can
(16:09):
look at the sum total of allyour genetic variations and come
up with some kind of anaggregate or identify, like sure
you have a BRCA gene, but youalso have a variant over here
that is actually quitebeneficial, that negates some of
the risk from the BRCA1 or 2gene.
And that raises another issuethat I think most healthcare
(16:34):
consumers are not aware is thatsome genetic variants and I'm
not saying the ones that youguys focus on with the work at
Panacea, but some geneticvariants actually confer benefit
Right, with the work at panacea, but some genetic variants
actually confer benefit Right.
And so when you start factoringin, well you know when, when
you isolate a particular geneand say, okay, I'll use the
bracket, just because you youbrought that up, that might, in
(16:58):
some people, confer an increasedrisk of breast cancer by 80%.
But is that mitigated by otherthings, and I don't know that we
have answers to that.
Like, I think collectivelywe're smart enough to ask the
question, but I don't thinkwe're smart enough yet to
actually have the answer.
Speaker 3 (17:13):
Yeah, and I think
you're right.
I don't think we have theanswer yet, but I think, just
like you said, we sort of havethis knowledge and this
awareness that some genes areare, uh, actually conferring
some some protection, right, um,and so, and we actually, I
think, see that even inalzheimer's um today, I think
the goodness, the apo, apo4 isthe, the mutation, I believe and
(17:39):
don't quote me on this becauseI'm not a geneticist um, but the
, that particular gene increasesyour risk, right for developing
.
It is the apoe4 gene yes, apoe4,and then there's, I think, the
uh apoe2 and then three, and Ithink one of those actually
confers protection.
So, um yeah, in that veryspecific example we have,
(18:03):
depending on your, you caneither have an elevated risk or
a lower risk right.
Yeah, and certainly that existsin many other cases as well,
many other genes and many othermutations.
We're still figuring it outright.
We're still learning every daythese specific gene behaviors
and how these behaviors aredirectly affecting our health
(18:26):
and how, in combination, they'reaffecting our health.
But, like I said, I think thegood news is that, although
there's still much to learn,what we do know we know pretty
well.
We're pretty confident aboutthese things, and that's why
genetic testing, especiallyclinical genetic testing for
prevention, is such a powerfultool, because it can help us
(18:50):
understand what a particular andwhat kind of risk a particular
individual might be carrying inthose you know handful and when
I say handful, I'm talking aboutthousands of genes, I'm not
talking about five or 16.
We're talking about thousandsof genes, thousands of genes.
I'm not talking about five or16, we're talking about
thousands of genes.
And when we review thosethousands of genes and those are
(19:10):
the genes you know that we'repretty confident about because
there's a lot of data there tosupport how those genes behave
in our health we can really havea great opportunity to help
people get ahead of these riskfactors and stay healthy.
Speaker 1 (19:25):
Yeah.
And so that brings up and it'salmost become a catchphrase in
science and certainly in naturalmedicine is that you even said
this in some of the emails thatwe sent back and forth that
genes are not your destiny.
And yet I still hear people allthe time saying you know, well,
(19:46):
I've got xyz problem.
Well, my dad had it, my mom hadit, my grandmother had it, so
it's genetic and and it's likethey're throwing their hands up
in defeat and just you know,betraying this mindset that well
, it's genetic, I can't doanything about it.
So one of the things that I Ilike about I'll say the little
(20:07):
that I know about panacea isthat you are not just trying to
provide individuals andclinicians with predictive data.
You're trying to bridge the gapbetween that and taking action,
which in and of itself saysthat you guys understand that
genes are not your destiny, youknow.
(20:27):
So you have someone's geneticprofile, and then you have all
of these other epigeneticfactors or influences that can
either, you know, tune up ortune down the probability that
something will actually manifestin someone's life.
So, instead of me going off ona monologue, why don't you talk
about that from your perspective, from Panacea's perspective?
(20:50):
Why did you take that extrastep and say, hey, we're not
just going to be a gene testingservice, we're going to try to
connect people to?
I think the term you guys useare genetic counselors, and I
might be wrong on that.
No, that's right, yeah, so whydid you say, well, we need to
put this piece in there?
What problem were you trying tosolve by going beyond the
(21:13):
simple testing?
Speaker 3 (21:15):
Yeah.
So let me just quickly explaina little bit about Panacea and
what we do so your audience canfully understand.
We are actually not a lab.
We are not a group of geneticcounselors, we are not a group
of doctors we are none of that.
What we do is we actually bringthese vital key stakeholders
(21:38):
together in one simple workflowso that anybody and everybody
that wants to access life-savingclinical genetic testing can do
so right on our site withoutactually having to go to your
doctor.
Beg them, convince them thatyou need this test, which 99
percent of the time they'regoing to tell you you don't need
(21:59):
it, because doctors are notalways fully trained on how to
utilize genetic testing to carefor patients, and this science
changes so quickly doctors canbarely keep up with it.
In addition, insurancecompanies don't always cover
genetic testing for people, evenwhen it is indicated that you
might benefit from genetictesting, so it's very hard to
(22:21):
access in traditional healthcaretoday.
So what we did is we pooledtogether all of the stakeholders
that have to be together forthe effective delivery of
clinical genetic testing.
What most people don'tunderstand is that clinical
genetic testing, or really anykind of genetic testing that
gives you information about yourhealth is not always very easy
(22:44):
to understand.
Sometimes it's not easy tounderstand what it means and a
lot of times it's not even easyto understand what it doesn't
mean.
That is just as important aswhat it does mean, and the
renowned expert on clinicalgenetic testing is a genetic
counselor.
It's actually not a doctor, nota physician, not not a general
(23:09):
physician, at least.
So what we decided to do is wedecided, number one we're going
to deliver real clinical genetictesting to people, because that
is the type of genetic testingthat you should be basing your
healthcare decisions on, notdirect to consumer.
You know genetic testing and wecan explain the difference
(23:29):
between that.
So, number one, we're going todo that.
We're going to makelife-changing, life-saving
clinical genetic testingaccessible.
Like you know, buying dog foodon Amazon is super easy, super
simple and accessible andaffordable.
By the way, that's a wholeother factor.
These tests are alwaysaffordable.
Number two, we're going todeliver this information with
(23:52):
the right clinical guidance, andthat includes the guidance of a
genetic counselor.
The genetic counselors sit withthe patients for an hour, um,
right after patients get theirresults, and the genetic
counselor is going to review andanalyze your test results and
give you an idea of what theymean and, again, what they don't
(24:13):
mean and what you can be doingabout your particular genetic
makeup.
Um, are there certain um youknow screenings that can be done
more frequently for somebodylike you with your genetic uh
makeup?
Are there certain medicationsthat you can be on?
Are there certain lifestylechanges that you can essentially
(24:34):
make to help reduce your risks?
There are so many things thatare actually in the control of
the patient, um, in our control.
Right, my control, your control.
Even if it is something that wecarry in our genes, we still
have control.
Most people, I think, forgetthat your health is 50% maybe
(24:57):
your genes and 50% yourenvironment, your lifestyle, you
know what you're exposed to ona daily basis, et cetera, and so
there's a good chunk of yourhealth that is actually in your
hands.
And the other issue is that whenyou do have a genetic mutation
for something, it doesn'tnecessarily mean that you're
(25:18):
going to develop a problem oryou're going to get a disease.
It's just a red flag.
It's just saying, hey, thisparticular combination that you
inherited from mom and dad makesyou a little bit more at risk
for this problem, and so it'skind of like a hey, pay
attention to me.
Type of thing.
It is not written in stone, itis not something that is
(25:40):
unchangeable and just have tothrow your hands up in the air
and surrender to is unchangeableand just have to throw your
hands up in the air andsurrender to.
So again, that's why thesetests are so powerful, because
there are so many things thatyou can be done, so many things
that can be done, so many thingsthat you can do that are in
your control, to kind of reducethat imperative risk that you
have.
Speaker 1 (26:02):
Hey guys, dr N here.
I wanted to step in for just amoment to tell you about a
discount code that Dahlia andher team have graciously offered
my listeners.
That gives you 20% off thegenetic testing that we're
talking about in this episode.
As you know and you've heard mesay this before everything
about your health is determinedby how your diet and lifestyle
(26:23):
choices and your environmentalexposures affect your genetic
predispositions, and while, as ageneral rule, I don't advocate
for direct-to-consumer genetesting from a let's throw
everything at the wall and seewhat sticks perspective, I do
think that the type of testingpanacea offers holds great value
, given that heart disease andcancer are the top two thieves
(26:45):
of not just quality of life butlife itself.
Maybe, just maybe, knowing youdo or don't have genes that
greatly increase your risk ofthese things can just be the
trigger that you need to takecare of your health and to take
it more seriously.
Having said that, you can headon over to seekpanaceacom the
link is in the description anduse the discount code
(27:06):
DRNOSEWORTHY20 to get 20% offtheir genetic testing, which
includes a consultation with aqualified genetic counselor.
Now back to the show.
So the role of the geneticcounselor, then, in terms of the
lifestyle implications.
Do they just raise theawareness, or do they actually
(27:30):
deliver action, steps andprograms and walk people through
a process, or or is there arole?
Mostly, to say, this particulargene is affected by some
quantity, by how you live yourlife.
Do you exercise, do you not?
Do you smoke, do you not, doyou do whatever?
So how far down that path dothe genetic counselors that
(27:50):
you're connected with?
How far do they bring theirclients?
Speaker 3 (27:54):
Yeah.
So today, obviously, there'sthe session that sort of
delivers the results and offersnext steps, but the guidance is
always that the patient takesthe summary and the results
directly to their healthcareprovider, directly to their
physician excuse me, to theirphysician, because the next
(28:16):
steps, aside from the lifestyleright changes that could
potentially be made, the nextsteps are really important for
your healthcare provider to know, for your doctor to understand,
because, again, those mayinclude extra screenings, they
may include certain blood tests,they may, you know, include
certain medications, and that'swhy the genetic counselor will
always advise that the handoffor that the next step is for the
(28:40):
patient to take thisinformation to their providers,
because their clinical providersare key to keeping them healthy
right.
This is not this.
Our endeavor here at Panacea isnever to eliminate the
physicians.
What we do is we make it easierfor people to get this test
(29:01):
outside of their physicians.
However, it is very importantfor their physicians to play a
role in their healthcare whenthese results come out and when
the guidance is given by thegenetic counselor?
Speaker 1 (29:14):
Yeah, and I can.
Obviously, I can only speak formyself, but I have a feeling
that most other practitionershave.
That's okay.
Sorry, my dog, that's all right.
Most, most other practitionersprobably have the same mindset
that you know.
Sometimes we look for, we lookfor the trigger that's going to
(29:38):
help people change how they lookat.
Number one, their autonomy I'llcome back to that and number
two, um, how important it is forthem to take the results
seriously, right, and so, on theautonomy side, I've always
believed and this is to me, it'sone of my core principles and
(30:01):
core tenants is that 80% of whatpeople can do to get healthier
is under their control, and mostof that falls into the realms
of changing their diet, lookingat their lifestyle, which has
multiple subcomponents and, youknow in our world, taking
targeted nutritional supplementsthat are specific to them, you
know, rather than just some kindof generic stuff.
(30:23):
So that's the autonomy part isabout taking ownership and
saying, uh, I'm not going tosimply rely on the medical
system or a given practitionerto tell me what to do.
I'm going to take ownership ofthat.
But sometimes, um, I wouldimagine being confronted with
(30:44):
and that's a strong word, butpresented, being presented with
a report that says you aregenetically primed for X, Y and
Z, which can be affected bymedications, lifestyle changes
etc.
That's got to be prettycompelling, a compelling impetus
(31:05):
for people to take it seriouslyand then to go to someone to
get the help.
But here's my question, andthis is probably where we can
branch off and talk aboutdifferent types of testing and
the way that other organizationshave handled that and are
handling that.
Back to the idea of genetictesting is not settled science.
(31:27):
It's also not 100% foolproof,right?
I don't think there's anytesting methodology out there
that is 100% sensitive and 100%specific, meaning that it never
gets it wrong.
And that's also like and thatbelief also, unfortunately, is
(31:47):
present with clinicians Likethey think that if they do
genetic testing that it's anabsolute, that if a company says
you have XYZ gene variant, thenthat means you have it without
any shadow of a doubt, right?
So when I emailed you some youknow some thoughts on what we're
going to talk about today Imade note of an article from the
(32:09):
journal nature which, um, Ipodcasted on this before.
I posted on social media before, um, and, and let me just this
is not for your sake, it's justfor everybody listening, but in
in 2018, the journal nature didsplit testing with DNA samples
and they sent half of eachsample to basically a gene
(32:30):
research lab I think it was andthe other half of the sample
went to 23andMe and yes, I'mgoing to name names.
Speaker 3 (32:39):
You said it, not me I
know I'm allowed to.
Speaker 1 (33:00):
I know I'm allowed to
, and so the results of the
things that 23andMe said thisperson had, or these people had,
they in fact did not.
On top of that, the studyconcluded, the study's authors
concluded that the third-partygene databases that were
available back in 2018, and I'msure the quality of these
(33:23):
databases have improved over theyears that they were either
missing critical data or, insome cases, were frankly
incorrect.
Yet back in 2018, 2019,somewhere around that time,
there was a lot of people thatwere jumping on this bandwagon
of getting their genes testedfor the purposes of
understanding their health andsometimes directly driving
(33:46):
lifestyle changes or evennutritional supplementation, and
they had this mistaken thoughtthat, again, the results were
bulletproof.
So and this may be getting intoan area where you don't feel
comfortable answering, andthat's okay but do you have a
sense in general of what theerror rate is?
(34:07):
Even and let's assume thatpanacea is using the, you know,
top tier technology, cuttingedge technology what's the error
rate?
Is it?
Is it a half a percent?
Is it 4%?
Is it 40%, like they saw with23 and me back in 2018?
Speaker 3 (34:24):
Sure, I think, of all
the things that I would love
for people to take away fromthis conversation, it's this
particular question, thisparticular topic.
So thank you for bringing it up.
So I think the first thing thatpeople really have to
understand and most people don'treally have a good
(34:47):
understanding of this, which isunderstandable, right?
This stuff is complicated andnot everybody's an expert here.
I, frankly, I'm not even anexpert on the technical side,
right?
The key thing to understandhere is that most
direct-to-consumer companies areusing a very different type of
(35:09):
technology than clinicallaboratories.
They're both doing genetictesting, but the genetic testing
that each one is doing isdifferent and the technology
that's being used is verydifferent.
Direct-to-consumer companies cantypically use a technology
called microarray and microarray.
(35:30):
I compare it to a search andfind function in a digital
document.
Let's say you want to find aword that you know you
misspelled a few times in thedocument.
You activate the search andfind feature.
You type in the misspelled wordand that misspelled word
essentially gets highlightedevery time it appears in the
document, right?
(35:51):
You find the misspelled word,you change it and you're good to
go.
That's the search and find.
It is very similar to whatmicroarray does?
Microarray has a predeterminedmisspelled right, gene
combination or mutation.
It searches the individual's uhgenome or not genome, but gene,
(36:12):
because it's lookingspecifically in a gene, by gene
basis, I believe and if itdoesn't find that particular
misspelled mutation right, itsort of is a negative and that's
it.
Genetic testing on the clinicalside uses a very different type
(36:33):
of technology called next-gensequencing.
Next-gen sequencing is aliteral reading of every single
letter of the genetic alphabet,or at least the gene alphabet.
That is comparable to mehanding you a document or a book
(36:54):
and saying, doc, read me thisdocument, but don't read me
every word, Read me every letterof every word, in every
sentence, of every paragraph, onevery page.
It is that thorough and notonly are you going to read it
once or twice or three times,you're going to read it 30 times
(37:14):
, sometimes 80 times, sometimes120 times, and so the level of
certainty and accuracy that goesinto next-gen sequencing, which
is what is used for clinicalgenetic testing right, is far
greater than the depth and theDC in most cases of microarray.
(37:37):
The reason why microarray isused is because it's effective.
It can help find a veryspecific targeted mutation right
that we're looking for, um, butit's also affordable.
It's pretty cheap, right, whichis why you can get a direct to
consumer genetic test thatreviews your genes for 70 bucks
(37:58):
maybe, maybe even less than that, right?
Um, and it's fast, it's really.
You can turn these tests aroundvery quickly.
So that's typically why a lotof direct-to-consumer companies
are opting to use thisparticular type of technology.
It's actually surprising evento the scientific community how
poorly accurate those tests werein that particular study,
(38:24):
because microarray typically isnot that inaccurate.
Microarray is still arelatively reliable technology.
So it's even surprising to thescientific community why the
results were so shockinglyhorrible in that particular
study.
But again, if you were to gointo a side-by-side comparison
(38:45):
of microarray tech versusnext-gen sequencing tech, it's a
drastically differenttechnology when it comes to
accuracy and how thorough thesetechnologies are.
We are a direct-to-consumercompany that uses clinical
genetic testing and next-gensequencing and CLIA, cap
(39:07):
certified labs.
We don't work with laboratoriesthat don't have these
designations.
Basically, cap and CLIA labsare the labs that your doctor
uses, the labs that hospitalsuse, the labs that insurance
companies pay, and it's becausethey operate at very high
standards.
They get audited left and right.
(39:27):
They have to keep thesecertifications and these
designations active in order tosort of offer really reliable
testing to health systems and todoctors, and those are the only
labs we work with because theyuse technologies like next-gen
sequencing.
And so the moral of the storyis not all genetic tests are
created equal, and not allgenetic tests are created equal,
and not all genetictechnologies are created equal,
(39:50):
and that is why, as a physicianor as a medical provider, you
have to be very aware of thetypes of technologies and the
types of genetic tests that arebeing sold and being offered, so
that you can be verydiscriminatory when it comes to
using these types of tests forthe betterment and for the care
of your patients.
Speaker 1 (40:10):
Hmm, so can you, can
you give me a list of terms or
phrases that clinicians orhealthcare consumers should look
for to say, yes, this qualifiesas validated good technology
versus?
This is the one to stay awayfrom.
Because you mentioned microaway array, I know on your
(40:33):
website you talk about wholeexome sequencing and we might
want to define exome becauseit's all technical language.
It is.
Yeah, and so you know, maybe,and again, if this is outside
your realm of expertise, that'sfine, but you know, trying to
define the difference betweenwhole exome sequencing,
(40:54):
genotyping or genotypesequencing, because that's not
my field of expertise.
These are questions that I haveas well.
Speaker 3 (41:03):
Sure expertise.
These are questions that I haveas well, sure.
So I think every providershould ask a couple of questions
when they're looking for aparticular type of test or a
particular laboratory.
Number one what technology areyou using?
Is this microarray?
And if it is microarray, whatgenes are you looking at?
What particular mutations areyou looking for?
Because that's what microarraydoes, right, it has a preset
(41:25):
mutation that it's kind offlashing a light on the gene for
it's looking for.
So what are you looking for?
And is this laboratory a CAP orCLIA certified laboratory?
Or is it just, you know, astartup laboratory that somebody
just decided to wake up, buysome expensive machinery and
start running right, which isperfectly legal?
(41:47):
Anybody can do that.
You can literally buy, you knowa couple million dollars worth
of machinery, maybe even less,open up a lab and sell testing
to the public.
That's perfectly normal,perfectly legal.
But the key here is that you'reprobably not running it the way
that a Kaplan-Cleolos certifiedlaboratories run.
You probably don't have expertgeneticists and you know
(42:09):
laboratory directors that arethat are you know sort of
managing this particularlaboratory.
Those things make it different.
What?
What you know bioinformaticstechnology are you using to
analyze the data.
So all of these questions arereally important to ask and once
a provider has a better senseof how this laboratory is run,
(42:30):
what tech they're using, arethey CAPTLEA certified?
What types of tests are theyoffering?
Is there a geneticist on staffthat they could speak to?
So, once all of those questionsare answered, do they offer
genetic counseling?
Right?
That's very unlikely to be athing, but you know that's a
(42:50):
good question to ask.
Can an expert genetic counselorguide my patient on what these
results mean?
Are you focusing onhealth-specific genes or are
these just, you know,fun-to-know genes?
Like you know, I think, 23andmeoffers a um, uh, a test that
uncovers if you have a geneticaversion to cilantro or
something like that.
(43:11):
Like this is it's cool, it's fun, but like is it going to change
my life?
Speaker 1 (43:15):
No, it's not
practical.
Speaker 3 (43:17):
Right, so, um, these
are.
These are things that I thinkevery, like I said, every
clinician, every provider needsto be able to ask.
Speaker 1 (43:29):
So well, I had a
question pop up that relates to
a topic we've already talkedabout, which is the genetic
counselors, and I know thatthey're not employees of Pavecia
, they're, you know, a service.
I would assume thatsubcontracts with you employees
of Pavecia.
They're, you know, a service.
I would assume thatsubcontracts with you.
But would you say it's fair tosay that the first, their first
(43:53):
goal is to help people not freakout when they realize they have
genes that predispose them to.
You know things that can bequite scary.
You know cancers and heartdisease and stroke.
Speaker 3 (44:00):
Yeah, absolutely so,
believe it or not, one of our
jobs uh, before a patient evengets a test, before they even
sit down with a geneticcounselor is to help the people
that are considering this typeof test, not freak out.
That's literally our job,because we cannot do what we do.
We cannot sell genetic testingand make this stuff more
(44:22):
accessible without educating theuser properly and giving them
the comfort of understandingthat this test is not your
destiny.
The results of this test arenot meant to scare you.
If this was a scary test, wewouldn't exist.
Literally Like what?
What company would be inbusiness if the product that
(44:44):
they were offering was reallyscary?
There's no purpose, right?
So these tests are literallyavailable so that you can take
away something vital when youget your results, and that is
one of two things.
It's either a little bit morerelief because you don't have a
(45:07):
genetic mutation that puts youmore at risk for something which
, by the way, most peopleactually will fall into that box
.
Most people do not haveclinical mutations that will
increase their risk fordeveloping certain problems.
So that's a great thing, right,you walk away with a little bit
more comfort.
The second thing that you canwalk away from is empowerment.
(45:31):
You know now that you have amildly elevated risk or a
majorly elevated risk for thisparticular problem, and here's
the good news you can now, today, before you have any problems,
you can now, today, before youhave any problems, take action
to reduce the likelihood of yougetting this problem and, in
(45:52):
some cases, completely eliminateit.
It depends on, obviously, whatthe problem is.
Um and so, again, the purposeof these tests is to put you in
a better place with the resultsthan without them.
That is the sole reason we havea company, because this is
beneficial and this is helpful.
It is not supposed to be scaryand it is not supposed to be
(46:13):
something that people are likeoh I don't want to do this,
otherwise it wouldn't, itwouldn't be beneficial, it
wouldn't work.
Speaker 1 (46:19):
Yeah, and it's
probably important to point out
too that with all of the um, thesequences that you guys can
identify accurately and withconfidence, not all of them
carry an increased risk level,like the 80% of the BRCA gene
that you used as an example.
Some gene variants willpredispose someone to a
(46:42):
particular condition by a factorof 10%, others might be 30%, so
it's a range just because youhave a gene.
The question then is what isthe gene and what?
is the risk associated with thatspecific gene, which then also
kind of gives you the likelihoodthat taking ownership of your
(47:02):
health and taking action on thatis going to help.
For example, if you have a genevariant that is only you know
contributes 10% to the risk andthen 90% is epigenetic, that
means that finding the rightdiet and lifestyle, maybe
getting on the right nutritionalsupplements, is going to have
way more impact on your outcomethan the genetic risk might
(47:26):
imply for the gene itself.
Right, and so I would imaginethat these genetic counselors
not only help people not freakout, but realize they they're in
control and now they can takeaction, but then to start
sorting through their genevariant profile and showing
these are your really high riskones, these are your lower risk
(47:48):
ones, and so to help themunderstand the genetic landscape
, or let's say the risklandscape that their gene
testing presents to them.
So I have another question, justbased on the last couple of
minutes of conversation, is thatwhen I look on your website, I
understand sometimes things thatwe post on websites don't
capture the entirety of whatmight be looked at, but you have
(48:11):
one graphic on the website thatyou know kind of breaks down.
I think it's roughly about 10different condition types or
gene variants, all of which,most of which, I think, fall
into the categories of variouscancers and cardiovascular
disease risk or risk forcardiovascular events.
Is that the totality of whereyour focus is right now?
(48:34):
And, if so, is that because ofthe limitation in the testing?
Or is that simply because,statistically, most people are
going to die from cancer orheart disease?
Speaker 3 (48:46):
Excellent question.
So before I answer that, let mesort of highlight what type of
testing we do so that I can sortof answer the question that you
just posed.
So we focus on a type ofgenetic test called whole exome
sequencing.
There there are two like big,big daddy you know, granddaddy
(49:15):
uh genetic tests that areavailable in in uh clinical
genetic testing.
There's whole genome sequencingand whole exome sequencing.
Whole genome sequencing ispretty much what it sounds like.
It is the review of everytidbit of genetic information
that lives in your genome,everything from like a to z.
So if I was to compare it tosomething we use and know every
(49:37):
day, it is the first letter ofthe title of a book on the cover
of the book until the very lastletter on the back cover.
That's all the whole genome.
The whole exome is prettysimilar, but it is more focused
and what it focuses on are thegenes, just the genes.
(50:02):
Now that might pose anotherquestion.
So people say, wait a minute,isn't your genome your genes?
And the answer is yes, butthere's more than just your
genes in your genome.
Your genes are really specificpackets, little purses of
information that instruct yourbody to do something.
(50:23):
But there is genetic dataoutside of those purses, outside
of those little you knowinformation pockets.
There's information in between,like I said, and those, those
areas essentially of the genomedon't necessarily instruct your
body to do something specific.
(50:43):
They don't actually code forproteins and therefore they
don't actually give informationto your body.
But what they do and franklywe're still kind of
understanding what they do whatthey do is they support the gene
areas.
They're kind of like supportivegenetic information that help
the genes do what they need todo.
So the important thing tounderstand is that the gene
(51:07):
areas, the areas that carryinformation, that code you know
your body to do somethingspecific, those areas, as far as
we understand today, are theareas in which, if there is a
mutation in your gene um, thatcan affect your disease
susceptibility.
So most of the genetic changesthat occur in our genome that
(51:32):
affect our health come fromchanges in the genes, in the
gene packets, not in the areasin between.
Right Makes sense because thosegene areas are instructing our
body to do something and theareas of genetic information in
between the genes aren't reallycoding right or giving
information to our bodies to dosomething.
So the exome is sequencing onlythe gene areas, right, the
(51:59):
packets of information that giveour body instruction.
That is what the exome covers,of information that give our
body instruction.
That is what the exome covers.
The reason why that is soimportant is because, again, not
only is it the areas that areactually giving instruction to
our body.
When you sequence those areas,you actually are running a test
that is much more cost effective.
(52:20):
Whole exome sequencing isactually a fraction of the cost
of whole genome sequencing andit gives you almost all the
information that you need comesto understanding how your
genetics are impacting yourhealth.
So it's the, it's the, you know, biggest bang for your buck,
the most juice right for thesqueeze.
(52:42):
So that's important tounderstand Whole exome
sequencing versus whole genomesequencing, and then whole exome
sequencing versus somethinglike microarray.
Microarray is, again, littlesearch and find of a
predetermined mutation.
Whole exome is a reading, aliteral reading.
It uses next-gen sequencingtechnology.
(53:02):
So another example of whatwhole exome sequencing would
look like it would be again mehanding you a book and me saying
okay, doc, read me the firstletter of the first word in
chapter one to the last letterof the last word in chapter 30,
whatever is the last chapterright.
It's all the meat and potatoesof the book.
(53:25):
It doesn't read the cover.
It doesn't read theacknowledgements.
It doesn't read the table ofcontents.
Right, that would be wholegenome.
But whole exome reads me thestory.
It tells me everything I needto know about story of this book
.
And again it's fraction of thecost.
So that's why we choose wholeexome.
I know that was a little bit ofa exhaustive explanation, but
(53:48):
it's very important for peopleto understand why whole exome is
important.
Speaker 1 (53:51):
Yeah, this is the
kind of information I want,
particularly for clinicians whomight be listening, and so, if
you'll indulge me for a second,I'll try to get some terminology
out, and then I have a questionabout the work that you're
doing.
I'll come back to that.
So, basically, I think, if Iunderstood you correctly,
(54:13):
merging that with what I think Ialready understand, which, I
grant it, could be completelyimperfect you know, we look at
DNA and we use words like DNAand genetics and genome almost
interchangeably.
They're obviously related, butthey're not necessarily the same
thing.
I know that in years gone by,scientists were using terms like
(54:38):
junk DNA and my understandingis that that is referring, or
used to refer, to the non-codingparts of the DNA sequences and
the chromosomes.
Another term for that areintrons.
Right, so you have exons andintrons.
The exons, all of the exons,grouped together, make up your
(54:59):
exome, and that's what you'retesting is the coding.
And that's what you're testingis the coding.
And what we mean by coding DNA,as you pointed out, is that it
gives instructions to a cell todo something by encoding or
driving the production ofproteins.
Right, and so the introns?
Yeah, the introns are, you know, quote, unquote, the junk DNA.
(55:20):
They may code for certainthings, but it doesn't
necessarily have a functionassociated with it.
So what you said is it playssomewhat of a of a like a
supporting role.
My understanding and again this, this is where my understanding
starts to break down is thatscientists are now starting to
think well, maybe all junk DNAis not junk.
Speaker 3 (55:43):
After, all, it's not
junk right.
Speaker 1 (55:45):
That there are
functions that these things
might serve.
We just don't know what theyare.
So here's my question to youguys with your whole exome
sequencing, are you sampling andretaining data on exomes that
don't relate to things likecancers and heart disease,
because it's part of the exome.
It's just not what you'rereporting on or what your focus
is disease, because it's part ofthe exome.
It's just not what you'rereporting on or what your focus
(56:05):
is.
So are you growing a databasethat can later be used to go
through to find patterns orcorrelations that maybe in two
years or five years we're goingto say, guess what, we found
other stuff that is relevant forthis problem over here.
So that's one question.
And knowing that we're startingto think that junk DNA is not
(56:26):
all junk, are you gathering dataon junk DNA sequences again so
that at some point in the future, somebody smarter than us can
come along and say guess what?
You know, this isn't junk andhere's why and here's how we can
use it.
Speaker 3 (56:41):
Yeah, how we can use
it?
Yeah.
So, in order for us to gatherinformation on the junk DNA, as
you put it and as science putsit right, the scientists have
been referring to those intronicregions, just as you said, for
you know, ever since we startedstudying genetics as junk DNA.
(57:02):
The interesting thing aboutjunk DNA is that it is actually
the vast majority of the genome.
Speaker 1 (57:08):
Yes.
Speaker 3 (57:09):
The exome itself is a
very small portion of the
genome, yes, and so it's.
It's highly unlikely that thisjunk DNA is actually junk.
I think that the key here isjust that we don't fully
understand what it's doing.
We don't know, right?
Yeah, we don't fully have agrasp on what this stuff is
(57:31):
doing and how it's behaving.
And so you bring up, you pose agood question is are we
actually looking at that junkDNA?
The only way we can do that isif we actually sequence the
whole genome.
Today, we truly only sequencethe exome.
Our laboratory partners reallyjust strictly look at the exome,
(57:51):
and that data, of course, sitsin a secure database, and our
goal, of course in the future isto sort of start tinkering with
that data, you know, groupingit together and taking a look at
what patterns we might be ableto find.
(58:11):
Today that is not something weare doing full transparency, but
the data is there and we intendto never utilize this data
without the permission and thecontrol, essentially, of the
user.
It is a founding principle ofours at Panacea, where this data
(58:35):
is not our data.
Your data is your data, my datais my data, right, and so I
should get to choose and Ishould get to see how my data is
being utilized, and so we willnever analyze data or use data
or share data with anybodyoutside of Panacea without the
knowledge, awareness andpermission of the user.
(58:57):
So that's something we want tomake very clear.
But today we are actually notutilizing that data per se,
right?
We're sort of just housing itand of course, in the future I
think later use of it in theexact way that you propose,
which is, identifying thesepatterns and linking them to
(59:17):
perhaps new insights, is goingto be important.
Speaker 1 (59:21):
But again, today we
only look at the Excel is going
to be important, but again, we,we, today we only look at the XO
.
Yeah, and let me talk about thedata privacy, and I might
reserve the right to come backto the XO and the technology,
but um.
So I know that like when 23 andme first came out and I think I
(59:42):
might be wrong, but I thinkthey were the first directed
consumer company, at least thefirst one that I was right.
Speaker 3 (59:48):
Yes, I believe so.
Speaker 1 (59:49):
Yeah, and there was
there was a lot of people
throwing their hands up, saying,like you know, whoa, nelly,
let's, let's slow down on this.
What's going to happen if aninsurance company gets my
genetic information and deniesme coverage or, you know,
whatever the case might be?
Um, so in that sense, is itmore, is it, is it more
(01:00:09):
advisable to source genetictesting through a company like
Panacea rather than going toyour, say, your primary doctor,
your internist, and trying toarrange it and have insurance
cover it?
Because going through a thirdparty like you keeps things like
I have control of this and andthe only way my doctor or an
(01:00:32):
insurance company is going toknow about it is if I allow them
to see it.
Is that a?
Is that a in your mind?
Is that a reason why peopleshould consider using panacea
rather than trying to convincetheir doctor, who, honestly,
probably doesn't understand thisstuff anyways and I hate to
(01:00:52):
cast shade on practitioners, butyeah, I would say that most
docs don't know what to do withthis data anyways.
So, yeah, I'll just kind oftoss that back over to you.
Yeah, I'll just kind of toss itback over to you.
Speaker 3 (01:01:03):
So there's one very
important thing to know when it
comes to data privacy and datasecurity.
To be fair, you know whetheryou know it's 23andMe or whether
you go to a clinical laboratoryor you know a company like
Panacea there is a law, afederal law, called GINA, and
(01:01:27):
GINA stands for the GeneticInformation Non-Discrimination
Act, and what this law does isit basically protects people,
like we knew, who want to getgenetic testing but also don't
want our insurance companies todiscriminate against us because
we have an increased risk fordeveloping cancer or whatever
cardiovascular disease.
Um, so that law essentiallysays ensure you cannot
(01:01:52):
discriminate or increase, youknow, the premiums or deny
coverage for a patient becauseof their genetic makeup.
It is illegal for an insurancecompany to do that, so that's
protective for us.
Basically, we can get this testand we can feel comfortable
knowing that, no matter what ourresults are, our insurance
(01:02:13):
cannot hike up our premiums ordeny us coverage.
But, to your point, if there'ssomebody who wants to get this
test but still doesn't feelcomfortable, right, despite the
laws that might be able toprotect them, they can go
(01:02:35):
outside of the traditionalhealthcare system.
Use a company like Panacea,because, of course, we are
offering medical genetic testingthrough capital certified labs
and they can get this test andthey can receive this
information without beingrequired to share it because it
was not funded by insurancedollars.
(01:02:56):
If your insurance company fundsa test for you your lab tests,
your mris or whatever they areentitled by law to see those
results because they paid for it, right, right, if they do not
pay for it, if you paid for itout of pocket through a company
like ours, then yeah, legallythey are not entitled to take a
(01:03:17):
look at the results because theydidn't pay for it.
Speaker 1 (01:03:20):
You did, and they
can't compel you to share that.
Speaker 3 (01:03:24):
I don't believe so,
no, and so if you want to be
extra cautious about yourresults being protected again,
despite the fact that there arelaws to protect it, then it
would be a great idea to use acompany like Panacea.
And again use a company likelike panacea, and again, a
(01:03:49):
company that uses cap and gliacertified laboratories, a
company that you know has theclinical uh guides that are
experts on this, on this stuff.
Um, it's certainly.
You know I'm biased, obviously,but I think this, this would be
certainly a great solution forfor people who are interested in
accessing this type ofinformation securely.
Speaker 1 (01:04:06):
Yeah, so let's, let's
go back to the things that you
guys do test work, Cause I Iposed a question.
I think we got sidetracked andI didn't get the answer.
At least, I didn't hear itTalking about the menu of things
that you test for.
Is it limited to those thingsbecause that's what the
(01:04:28):
technology allows, becausethat's where we have our highest
degree of certainty, or is itsimply because the number one,
number two killers are heartdisease, cancer?
Speaker 3 (01:04:38):
Yeah, it's the former
.
So genetic testing, even themost comprehensive genetic
testing whole exome, wholegenome, what have you is
basically as advanced as ourscientific knowledge of genetics
.
So it's limited by what we knowand what we understand.
The thing that I think isimportant to note is, although
(01:05:02):
when it comes to whole exomesequencing and whole genome
sequencing, everything is beinglooked at, you're not cherry
picking genes.
You're not only looking atcertain sections of genes.
Everything is being looked at.
The information that is, youknow, wielded off of these tests
again, is limited to where weunderstand genes the most.
(01:05:24):
But the interesting thing is,because everything is being
sequenced and everything isbeing looked at, your raw data
is actually quite important, andthe raw data is basically what
I said was all the informationthat comes off the machines,
whether science understands itor not, everything that was
sequenced.
Your raw data is very importantbecause your raw data doesn't
(01:05:48):
change.
These are the genes that youinherited from mom and dad.
They're not changing over yourlifetime, but what is changing
is, again, our scientificknowledge of what these genes
mean.
And so when you get a test withpanacea, we share, upon request,
your whole exome data.
It's a pretty large file, it'sabout seven or eight gigabytes
(01:06:12):
and you get to keep that and you, for the rest of your life, can
take your raw data and compareit to the latest scientific
studies and the latestscientific knowledge, to the
latest scientific studies andthe latest scientific knowledge.
And as time goes on, if thereare any relevant discoveries to
your particular genetic makeup,you will be the first to know
(01:06:32):
because you have your raw data.
You only need to get exomesequencing or genome sequencing
once in your life and you alwayshave the raw data and you can
always use that raw data to kindof compare it to, again, the
latest scientific knowledge.
And there are so many databasesthat you can upload your data
to and they will essentiallygive you updated reports on all
(01:06:56):
the latest knowledge andscientific understanding of
genes that pertain to you, right?
So that's really, reallyimportant when it comes to whole
exome and whole genomesequencing is how valuable your
raw data is to you.
For the rest, of your life.
Speaker 1 (01:07:13):
Yeah, I like that.
I'm glad you pointed that out.
So you know, going back to oneof the conclusions on that 2018
paper in Nature saying thatpublicly available databases
were incomplete and, in somecases, frankly incorrect, do you
have, do you have, a couple ofdifferent third-party platforms
(01:07:34):
that serve this purpose thatyou'd feel comfortable saying,
yeah, we think these, this groupor this group or these groups,
are doing the best job and, andif you're going to take your,
your seven gigabyte file andupload it somewhere to have it
housed and be continuallyupdated, who would that be, if
(01:07:54):
you're willing to share?
Speaker 3 (01:07:56):
Sure.
So we are not affiliated withthis company that I'm going to
share.
We do not endorse them in anyway, but we have essentially
used, or we have patients thathave used, this particular
database and providers that alsolike to use this database.
(01:08:17):
When it comes to raw data, it'scalled Promethease and it's
spelled, I think,p-r-o-m-e-t-h-e-a-s-e.
So we'll play on, you know, 30years, but that particular
database I wouldn't say it'spublic, it is a private company,
(01:08:42):
I believe.
Speaker 1 (01:08:44):
Well, I mean publicly
.
Publicly available in the sensethat I could get my own file.
Speaker 3 (01:08:48):
Yes, yes, you can
literally go to prometheuscom
right now and take a look atwhat, what, what it looks like.
Um, you can upload your datathere, whether it's your whole
exome data or whole genome datafrom companies like ours, or
even your 23andMe data or yourdirect-to-consumer data, which
you can request your raw datafrom them.
(01:09:09):
By the way, it's going to bemuch smaller than, of course,
what we offer because, again,they're looking at very specific
small things, but you canupload your data there for a
very small fee and they producea report and you can do that
once a year and sort of keeptrack of any of these changes
that might be pertinent to you.
Yeah, so that's a reliabledatabase.
(01:09:33):
From what we understand.
Again, we're not affiliatedwith them.
Speaker 1 (01:09:36):
Right Understood, are
you guys at the forefront of
gene testing technology, or isthat really just a matter of?
There are several competingtechnologies that are considered
cutting edge.
We just choose this one, thewhole exome sequencing, because
that's that, in our view andbased on our guiding principles,
(01:10:00):
is the most relevant way totest.
Speaker 3 (01:10:04):
Yeah, so, to be fair,
our laboratories are the ones
that are using the most cuttingedge technologies.
Right, we select partners,laboratory partners and
physicians and geneticcounselors who are at the top of
their field.
They know exactly what they'redoing.
They have a tremendous amountof experience and excellent
(01:10:27):
leadership when it comes tothese spaces, and so we partner
with these experts.
When it comes to, again,clinical genetic testing, right
now, the gold standard isnext-gen sequencing, and that is
offered on a C-.
Sorry, that's okay Okay.
(01:10:57):
That is offered by, of course,the machinery that is used, and
the machinery.
One of the leading companies inthis type of machinery is a
company called Illumina.
Illumina is like the owl ofgenetic sequencing machinery,
and so laboratories that weselect obviously typically use
aluminum machinery and they usetop-notch bioinformatics systems
and they have trainedgeneticists and all kinds of
(01:11:20):
experts at their laboratories.
So we like to believe that wepartner with people who are
really leading the genetic spacein those ways.
We choose again to use wholeexome for the purposes that I
explained.
It is the most thorough, it isa test that you only need once
(01:11:42):
in your life and it is one ofthe most affordable tests to do
right.
So our next step, potentially,is whole genome, when the whole
genome becomes a little bit more, a little bit more affordable.
But beyond that, when it comesto genetic sequencing and the
(01:12:02):
review of your inherited genesor inherited risks, as of today,
those are it whole genome andand whole exome, and so as long
as those, those kind of, remainthe, the, the top uh tiers of
clinical genetic tests, thoseare the tests we're going to do,
and as soon as there'ssomething new, we'll be the
(01:12:23):
first to to do it?
Speaker 1 (01:12:25):
yeah, I was.
I was going to ask if youmaintain an active list of
conditions or gene slashcondition pairs that are most
likely to be included if youstart to expand your test menu.
Speaker 3 (01:12:41):
Yeah, so again, that
would be job essentially to
understand where these geneticchanges might be contributing to
particular diseases.
They have access to incredibledatabases and they have the
(01:13:04):
expertise, of course on staffthe geneticists on staff that
entire careers and entire jobsfocus on keeping track of all of
the latest developments when itcomes to these systems.
Speaker 1 (01:13:17):
So, in your ecosystem
of all the experts that you've
pulled together that serve underPanacea, who actually generates
a report that a consumer coulduse and understand?
Or or do they get somethingthat's you know, just all the,
the, uh, you know sequence codesor the, our reference number.
(01:13:40):
You know that alpha numericeverything begins with an.
R?
Um to the point where, likeokay I, this makes no sense to
me.
I either must upload it tosomething like Prometheus or I
need to schedule a call with mygenetic counselor.
Are your consumers?
Are they given something thatthey could understand?
Speaker 3 (01:13:58):
Yeah, so the
laboratories that we utilize
produce clinical reports for us.
So they of course sequence thepatient sample, they run it
through their machinery and thenthey use bioinformatics
software to kind of analyze whatthese results mean and then
they produce a clinical reportfor us.
The clinical report gets sharedwith the patient and of course
(01:14:22):
it gets shared with the geneticcounselor.
The clinical report is readable, certainly, and it has a
summary of the results.
You have a mutation in thisgene, this gene this gene, but
it's dense, right.
It's not necessarily incrediblyuser-friendly, but that's okay
Because, again, the patient getsthat and the genetic counselor
gets that.
(01:14:42):
When the genetic counselorreceives the report, what they
do is they create a summarybased on the report and based on
their their own.
Every patient will get aresults report, right, a
clinical report, uh as well as asummary.
(01:15:04):
So once they meet with thegenetic counselor, the genetic
counselor will translate whatthat report means and recap the
conversation and sort of alsoclarify what the next steps are.
And every patient will getthose two things the results and
the summary from the geneticcounselor.
So no one walks away frompanacea confused.
No one walks away notunderstanding what their results
(01:15:27):
are or what they should bedoing next.
Everybody really gets thatclinical guidance that we really
wanted to be able to offer topeople.
Speaker 1 (01:15:34):
Yeah, and you know,
honestly, I like how you set
that up, because the morecomplicated the clinical data is
, the more need there is to havea conversation with an expert
who can translate that Now.
We're living in an era nowwhere so much information is
available literally at yourfingertips.
It's easy for people to takeclinical data absent of any
(01:16:00):
context or nuance and come tothe wrong conclusions.
Speaker 3 (01:16:05):
That's, I think, a
key problem is that
accessibility to data, as yousaid, is ubiquitous.
Right, it's everywhere.
Anybody can access these typesof technologies and can get
their hands on this information.
But the problem is thisinformation isn't always very
(01:16:28):
easy to understand and, again, akey part is understanding what
your results mean and what theydon't mean.
That is so important becauseyou know, you can see, you can
get a genetic test and realizeyou have a mutation in this gene
and do a quick Google searchand find out that this gene
might increase your risk for allof these horrible things.
But without the nuancedguidance of an expert, like a
(01:16:53):
clinical genetic counselor, youwon't really you won't really
know where you, you know whereyou sit, you won't really know
where your true risks are andwhat these results really mean
for you.
And the other thing that's alsovery important is your own
personal history of disease, ifany, or your family history of
disease, if you have a familyhistory of disease, and so
(01:17:14):
genetic cancer can also takethese really important ancillary
bits of information and alsouse that to sort of interpret
what your genetic results mightbe.
And that's key.
That's something that you can'tget from you know an average
direct to consumer test.
Forget about the technologyright.
You're not even getting thereal thorough next gen
(01:17:37):
sequencing technology from mostdirect to consumer companies.
You're certainly not gettingthe interpretation of the expert
or you know or able to talk tosomebody about what grandpa had
or what your aunt had or whatyou may have had personally.
Those are all very importantthings in assessing an
individual's overall risk,including their genetic data.
Speaker 1 (01:18:00):
Yeah, this might be a
question for either the labs
doing the testing or maybe yourchief science officer.
So if you don't have the answer, that's okay, but do you have?
Do you know what the falsenegative, false positive rate is
for the whole exome sequencingversus the micro array?
Speaker 3 (01:18:19):
Yeah, sure, yeah.
So, um, the error rates when itcomes to next gen sequencing
are very, very low.
There is no perfect test, asyou mentioned in the beginning,
um, but we're talking abouterror rates less than 0.01%.
Speaker 1 (01:18:34):
Yeah, which is
negligible.
Speaker 3 (01:18:36):
Negligible right,
really really low, and part of
the reason for that is theredundancy right Because these
tests are not only run throughthese machines that produce
these results.
There's also other types oftechnologies that are sort of
used to be for the informationto be sequenced and re-looked at
(01:19:00):
.
So there's multipletechnologies that go into using
this.
But next-gen sequencing itselfis very, very thorough.
Sequencing itself is is very,very thorough and remember the
um, the amount of times thateach letter of the genetic
alphabet is read is not once ortwice or three times.
We're talking about 30 times,90 times, a hundred times
(01:19:22):
sometimes, depending on the typeof test that's being run.
So it's, it's repetitious andit's um.
Because of that it's thoroughand the error rates are super
low.
So it's again not perfectthere's nothing perfect but
certainly very low error ratesand the information typically is
(01:19:43):
very reliable.
Speaker 1 (01:19:44):
Remember again.
Speaker 3 (01:19:45):
TAP, we have
certified labs using next-gen
sequencing technology.
Speaker 1 (01:19:49):
That's really what we
have to focus on.
That's what we're looking for,for sure.
All right, so let's try to cluethis up a little bit, but what
I would like you to end with iswell, first let's talk about
your story, because I know thatI read some of the articles that
you sent me links to, and I'malways interested in people's
individual stories.
(01:20:09):
Um, so, I and I'm alwaysinterested in people's
individual stories, but once wedo that, um, why don't you like
give your best pitch to aconsumer, a healthcare consumer,
about why they should thinkabout panacea?
Um, and then let's switch gearsand, uh, pitch the
practitioners and say, like, why, why should you be doing this
or encouraging your patients todo this?
(01:20:29):
So let's go back up and let'stalk about your story and your
own experience with Panacea.
Speaker 3 (01:20:35):
Okay, sure, so we'll
start there.
So the weirdest part is, Ithink if you would have asked me
10 years ago what I'd be doingtoday, the last thing I would
have told you is being thefounder of a healthcare company.
It was so off my radar and notpart of my plan.
(01:20:57):
I actually wanted to be adoctor.
I was on my way to medicalschool I had just graduated from
the University of Miami and Iwas applying to medical school
and a bunch of different medicalschools and I got a very
obscure opportunity to work fora small group of genetic
laboratories and my job at thosegenetic laboratories was to
(01:21:17):
sell genetic testing to doctorsand it seemed like a no-brainer
opportunity.
Of course, I could sell genetictesting to doctors.
I want to be a doctor.
Genetics is a huge part of myeducation.
I can speak to it very well.
There's no better person tosell genetic testing to doctors.
I want to be a doctor.
Genetics is a huge part of myeducation.
I can speak to it very well.
There's no better person tosell genetic testing to doctors
than me.
Well, I ended up workingpart-time for those laboratories
(01:21:39):
and after about 90 days, afterabout three months, I made $0
because, my whole job wascommission based.
I couldn't sell one genetic testand I didn't meet with one
doctor or two doctors.
We're talking about tens andtens of doctors, and so I not
(01:21:59):
only realized I'm probably not agreat salesperson, but I think
that the bigger problem is thatthere is a massive, massive
disconnect in the genetic spaceand healthcare, and that
disconnect is really caused bytwo major things.
(01:22:20):
This is what I kind of learned.
Number one insurance companiesare doing a really poor job of
providing wide coverage forgenetic testing for people.
Very few people qualify forgenetic testing and studies are
showing that those guidelinesthat basically screen those
people in order to be qualifiedare missing more than 50% of
(01:22:43):
people.
So the guidelines thatinsurance companies follow to
offer coverage to people aremissing 50% of people.
So huge barrier insurancecompanies Because of the
insurance company lack ofcoverage.
Doctors all the doctors that Imet and tried to sell genetic
testing to were a lot morehesitant to utilize genetic
(01:23:06):
testing in the care of theirpatients because they knew the
struggle that the patients weregoing to have in dealing with
their insurance companies.
In addition, doctor awarenesson how to use genetics in the
care of their patients is stillquite minimal, because this
stuff is advanced and it'schanging and it's an ever-moving
target and so doctors struggleto sort of keep up with it.
(01:23:27):
It's an ever-moving target, andso doctors struggle to sort of
keep up with it.
So I had an aha moment, really,when I discovered those things
and I realized okay, so it's notthe fact that the technology is
not there.
Technology is there, it'savailable, this is life-saving
stuff and we can use it.
It's just that the barriersthat exist in the system the
(01:23:53):
insurance company lack ofcoverage, the lack of doctor
awareness are literallyinhibiting the access to this
brilliant life-saving technology.
And so it was in that momentthat I said to myself I'm going
to be the one to change this.
And I sort of embarked on thismulti-mission to learn as much
about the space as I could, tokind of unravel these problems
(01:24:14):
that I just started to learnabout.
And it has been almost a decadeof me on this path and I met
some incredible people who are10 times smarter than I am and
have much more experience inthis space than I am.
And we sort of created thissolution to sort of you know,
deliver these life-savingclinical tests directly to the
(01:24:36):
public, the way that a lot ofthese direct-to-consumer
companies are easily deliveringsome sort of genetic testing to
the public, except we're goingto bring the real thing to the
public with that clinicalguidance.
When I launched the companypublic or, you know, company to
the public a couple years back,I decided I have to get this
test done myself.
Obviously, who would I be if Iwas the founder of a genetic
(01:25:00):
testing company and didn't getthis test done myself?
And lo and behold, I got thistest and I realized that I
someone who would never qualifyfor genetic testing in today's
healthcare, because I don't havea personal history of disease.
I don't have a family historyof disease.
I have a genetic mutation thatmakes me nine times more likely
to develop ovarian cancer thanthe average man.
(01:25:21):
And my sister, of course, gotthis test because of my results
as well.
She has the same exact mutationtoo, my results as well, she
has the same exact mutation too,and so, in a very weird twist
of events, the company that Ifounded to save millions of
lives and get this test in thehands of more people ultimately
maybe saved my life and mysister's life.
(01:25:43):
So it just goes to show you how, like, how unaware even me as
the founder, how unaware I wasof how much I needed this test
and, uh, how unaware the vastmajority of people are that they
probably could benefit greatlyfrom this type of test and save
(01:26:04):
their own lives and get incontrol of their health, and so
it really validated my, mymission.
You know, in founding thiscompany, I realized that I was
one of the people that reallycould benefit from this?
Speaker 1 (01:26:15):
No, that's a great
story.
At what age would you suggestpeople consider doing this test
on themselves?
I mean obviously sooner ratherthan later.
Speaker 3 (01:26:26):
But Exactly, yeah,
exactly.
So you hit the nail on the head.
The key here is to do this testwhen you don't need it, right,
yeah, you don't when.
When you're not sick, whenyou're not, you know, hitting
that age where things start torear their ugly heads.
Right, you want to get thistest when you're healthy.
Um, and for some people that beas early as mid thirties,
(01:26:50):
certainly early forties, is aperfect time in which you should
, you should, get this test.
And you know most people thatget, get these types of tests,
are healthy in in all sense ofthe word.
They're active, they exercise,they're, you know, they eat well
, they, they, you know, have doa lot of things to lower their
(01:27:12):
stress, they sleep well.
Most people that get this typeof test are the healthiest, and
the reason why they're gettingthis type of test is because
they understand the value ofprevention, of taking action
before there is a problem.
And so if I was to answer yourother questions, to kind of
(01:27:32):
deliver a pitch to the audiencelistening, that would really be
it.
If you are the type of personwho believes that more
information is better and youare already doing everything in
your power to be the healthiestversion of you.
This is a test that you shouldadd to your tool shed.
(01:27:56):
Essentially, it is not theend-all be-all test.
There is no end-all be-all test, but there are really powerful
tools that should be in yourtool shed for your healthcare
and for your longevity, and thisis certainly one of them, and
it's a once in a lifetime.
You don't need to repeat fullexome sequencing again.
You'll have your raw data andyou'll continually be able to
(01:28:17):
keep this test and these resultsvaluable because you'll have
the opportunity to kind ofreference all the latest
discoveries to your data.
So it's a no brainer.
This information is going tohelp you, it's going to empower
you or, at the very least, thistest is going to give you a
little bit more comfort, becauseyou may not have any genetic
(01:28:39):
mutations that you need to payattention to.
So again, to me it's ano-brainer and it potentially
saved my life.
Speaker 1 (01:28:48):
Yeah, and if we look
at the menu of things that you
test for, I like what you'refocusing on and just to
reiterate this for people whoare listening, um, the number
one and number two killers, uh,what most, if not all, of us are
going to succumb to uh, it'seither going to be some form of
heart disease, which is numberone, uh, followed by, you know,
(01:29:11):
various forms of more commoncancers, and those two combined
far outpace all other causes ofdeath, right, right.
So I like the fact that you'reyou know you're kind of hedging
your bets by focusing on wherethe numbers and where the
probabilities lie.
Um.
So, final question then um,just talk to practitioners and
(01:29:31):
and give your your best pitch asto why they should consider
panacea as part of theirdiagnostic workup.
And you know, with the kind ofwork that we do, which is, um,
quite often reactionary in thesense of sometimes people don't
come to us unless until they'vebeen sick for a very long time.
But I will say, at least formyself and I know for other
(01:29:54):
colleagues of mine, we're seeinga lot more people in the last
five years coming to us saying Ireally don't have any issues, I
just want to, I'm healthy and Iwant to stay that way.
So they're adopting thispreventive mindset, and it seems
to me that something likePanacea as a service fits right
into that model.
Speaker 3 (01:30:14):
Absolutely yeah.
So listen, the pitch is verysimilar.
Right Again, there are ahandful of very powerful tools
that are that exist today andthat are available today to us.
Not all of them are accessible.
Panacea is changing the gamewhen it comes to making one of
(01:30:36):
these very far more accessibleand useful.
Of course, again, that's wholeexon sequencing and this deep
kind of clinical genetic testingProviders.
I hear it all the time fromphysicians oh, my patient
brought me theirdirect-to-consumer test.
It basically delivered zeroinformation to me.
(01:30:58):
It was almost useless.
But everybody's hell-bent onthis genetic testing and I just
don't know what to do with it.
It's almost useless.
We are the answer to that.
We're the anecdote essentiallyright to this issue.
We are actually bringing thetypes of testing that doctors
(01:31:19):
should be ordering, thatinsurance companies should be
covering for people, and we'rebringing that with guidance.
You are not going to be leftalone as a provider, we have the
clinical expertise that can notonly guide the patient but also
can answer your questions asthe provider.
Our genetic counseling partnersconsult with the physicians if
(01:31:39):
there are any questions, and sowe are your partner when it
comes to clinical genetictesting and preventative genetic
testing for your patients.
You can certainly rely on usbecause, again, we're bringing
all of these key stakeholderstogether and we're making that
far more accessible for yourpatients and also for you, so
(01:31:59):
that you can do what you do best, which is save lives and take
care of people.
Speaker 1 (01:32:05):
Very well said, very
well said.
Any final words for theaudience?
Speaker 3 (01:32:11):
Final words.
Goodness, I think we covered alot of this, to be honest with
you.
But again, I think that the keymessage here and of course it
sounds like my dogs agree isthat the key message here is
that these tests and thesesolutions exist to empower you.
These tests and these solutionsexist to empower you Because in
(01:32:31):
this day and age, everything isaccessible right, but not
everything that is accessible isgoing to be helpful.
Not everything that isaccessible is going to be
accurate and reliable, and webelieve that if you're going to
base your healthcare decisionson the information that comes
off of these tests and services,they have to be reliable.
(01:32:52):
And again, they exist to giveyou really great, solid
information so that you and yourdoctors can make really
informed decisions for yourselfand get in the driver's seat of
your health and sort of putyourself in the best position to
live the healthiest, longestlife.
Speaker 1 (01:33:13):
Amen to that and
we'll call the interview
concluded.
Thank you, dahlia Atiyah-King,for all of your insights into
genetic testing, predictivegenetic testing and the value it
brings to both clinicians andhealthcare consumers.
Thank you very much for beinghere.
Speaker 3 (01:33:30):
Thank you so much for
having me.
It's a pleasure.
Speaker 1 (01:33:33):
This podcast is for
general informational and
educational purposes only anddoes not constitute the practice
of medicine in any form orcapacity.
No doctor-patient relationshipis formed.
The use of the information inthis podcast or any materials
associated with or linked to thepodcast is at the listener's
(01:33:54):
own risk.
The content of this podcast isnot intended to be a substitute
for professional andpersonalized medical advice,
diagnosis or treatment, andlisteners should not disregard
or delay obtaining propermedical advice when a health
condition exists and warrantsthat.
And finally, functionalmedicine is not intended or
(01:34:14):
designed to treat disease, butrather is a natural approach to
support restoring health andwellness.
The use of diet and lifestylemodifications and nutritional
supplementation is supportivefor adjunctive care.