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0	8460	Now, I do have some written things up here but these two speakers are two of the best that
8460	13920	we've had and I feel if I would give them an introduction it would be an insult. So here
13920	19380	today, uh, speaking on how your doctor might be trying to kill you and how personal
19380	24060	genomics can save your life, ladies and gentlemen, Jen and Darren.
26060	33980	Thanks a lot. Alright, so indeed, how your doctor might be trying to kill you and how
33980	39280	personal genomics can save your life. So, just real quick, the idea here is that personal
39280	47600	medicine, the drive to own your health a little bit more and working with your doctor is a
47600	52080	big deal. You know, it's a half hour talk, we just want to provide a couple of anecdotes
52080	56560	to kind of drive that point home a little bit. And along the way also, maybe give you some
56560	63120	ideas and some information related to genomics and how you can help yourself down that
63120	71980	path. So, the obligatory disclaimer, we're not doctors and we are not working for our
71980	76340	company right now, so. And I'm going to hand it over to Mike, or to Mike, I'm going to hand the
76340	83340	mic over to Jen. Thank you. So, before we really get into some of the details, there are
83340	88660	some basics that we should go over, just some terminology. Genome sequencing, when you
88660	94420	see commercials like 23andMe, they're sequencing parts of your DNA. That's how you get
94420	100140	information about your genome. Something that they will give you is called SNPs, single
100140	106320	nucleotide polymorphisms. The way to remember this is just, is where you vary from
106320	113540	what is considered normal. So, your SNP might be that you have a variant that is defective or
113540	118960	just not normal. And then you have personalized medicine, or precision medicine. This is
118960	124960	tailoring your medical prescription based on your DNA, based on your genetic code. And
124960	130480	then there's gene expression. Just because you have some malfunction or some DNA
130480	135460	variance does not mean it will actually be expressed. There's turning on of genes and
135460	138660	turning off of genes. Just because you have something doesn't mean it will actually
138660	144320	express or show. And then we have epigenetics. Your environment, things that you consume,
144320	149240	alcohol, tobacco, can also affect you at a DNA level. It's very important to know because
149240	154340	if you're going to explore your own genome, you'll want to be very familiar that just
154340	159400	because it says you have something that might be defective does not mean you actually
159400	167320	have it. So, I want to share with you an experience that I've had with my personal
167320	174640	genome and how it's affected my life. About ten years ago, one day, I developed a very
174640	180540	severe headache. So severe, in fact, that when I went to bed, I was hoping and praying,
180540	185640	please let me wake up in the morning. Now, here's a tip. If you're going to bed praying
185640	190320	that you wake up in the morning, you should probably be going to the hospital. But I just
190320	195620	want to shake it off. I got this. And I tried to go to sleep until about five in the morning.
195620	201800	It was very clear I needed medical attention immediately. So, rushed to the emergency room.
201800	207220	I got there. I'm in such excruciating pain, I can't even answer my doctor's questions.
207220	213320	I can't even communicate with my doctor. So, they give me a really, really good sedative,
213320	220140	gave me a good dose of Dilaudid, put me in an MRI, and took some pretty pictures. Here
220140	225980	are two of them. This is my brain. And as I come out of the MRI, feeling really good
225980	232920	on Dilaudid, my doctor tells me, you have a two-inch blood clot in your brain. If you
232920	240820	did not get here by now, you would be dead. So, I wonder, how did this happen? As did
240820	245780	my doctor, being of a somewhat young age, developing a blood clot that large in your
245780	253380	brain is not exactly normal. So, he does some basic genetic testing on me, takes about
253380	259980	15 vials of blood, and comes back and tells me that, you know those commercials where
259980	264140	they tell you about medicine and it's about two seconds worth telling you what the medicine
264140	268680	does and the rest of the time it's telling you how it could kill you, how you shouldn't
268680	274920	take it with certain defects or certain, with alcohol or breathing oxygen. There's a reason
274920	281360	for that. This is a typical medical disclaimer regarding birth control pills. And there's
281480	286840	a lot here, but what's hidden in there, you should not take birth controls if you have
286980	292620	a hereditary or acquired predisposition for blood clots. Well, how do you even know if
292620	298260	you do? If you haven't had your genetic testing done, you have no idea. So, you might be taking
298260	304240	medicine or pills or even vitamins that could actually be hurting you when you're not knowing
304240	309340	it. So, this is exactly what I had. I had been taking birth control pills and I had
309560	315040	a hereditary or acquired predisposition. My doctor comes to me and says, congratulations,
315040	323700	your homozygous C677T for MTHFR genetic mutation. What? What is that? So, he tries to explain
323700	329760	to me that it's something that a lot of people have and that there is this pathway here.
329760	335420	I'm not going to go into the details. This, everyone has, and this is responsible for
335420	340580	many things. When this works properly, it is responsible for making DNA, maintaining
340580	346540	your DNA, repairing your DNA, regulating gene expression, that's the turning on and off
346540	352440	of genes, regulating hormone function, regulating histamine levels. It's responsible for a lot
352440	359080	of really important things in your life. So, when this isn't working, what could go wrong?
359380	368540	Well, apparently a lot. And this isn't even everything. If you have these mutations and
368540	374900	if you do not have the proper balance in that pathway, you could be under-methylating, not
374900	380740	producing enough, or over, and that's too much. So, there's no balance there. You could
380740	387320	have any one of these things, including blood clots, which is, lucky for me, what I had.
387600	395440	So, I had some questions, and this is actually what my pathway looks like. And in medical
395440	402020	terms, this is called severely jacked up. This is not good. So, I do what I refer to
402020	409740	as under-methylating. I don't do that properly. And so, my doctor says, here's what you've
409740	415420	got to do. Can't smoke. Don't take birth control pills. And, you know what? You're of child-bearing
415420	420600	age. Take some folic acid. Take some multivitamins, just as general advice the doctors give, and
420600	427300	sends me on my way. Fortunately, I don't follow directions very well, and I hate taking pills,
427300	432380	so I didn't listen to him. I did not take folic acid. I did not take multivitamins.
432380	437640	And it's a good thing, because actually, he did not mean to kill me with this advice.
437640	442980	I'm sure he didn't. I like to think he didn't. I think I paid my bills on time. But, what
442980	447660	he was prescribing for me could potentially have killed me or put me back in the hospital.
447860	454080	Because folic acid and multivitamins, in some forms, is actually poison to me. So, good
454080	458860	thing I didn't listen. I had to have some dental work done. I went to the dentist, and
458860	463480	Mr. Dentist says, hey, would you like some nitrous oxide for this? It will make you feel
463480	468760	mellow, make it a little easier for the procedure. Sure. Give me some nitrous oxide. I want to
468760	474100	feel mellow. I want to enjoy this procedure instead of being in pain. So, everything goes
474100	479000	fine. Nothing happened. It was great, which is very fortunate, because there are many,
479000	484120	many, many documented cases. People who did not know that they had some genetic defects
484120	489380	that are contraindicative with nitrous oxide. And they did not leave the dentist office
489840	496600	alive. So, fortunately, for me, I was fine. I had a friend who happens to have the same
497180	501880	genetic mutation as I do. And I told her, I just went to the dentist. Fortunately for
501880	506880	me, she was a lot more well-educated in our genetic mutation than I was at the time. And
506880	512200	she told me, you need to research this. You need to really find out, because your doctor
512200	517440	is giving you information that really is not helpful for you. And there's more that you
517440	523240	need to learn. So, it's clear I needed to learn more about my DNA. What is that process
523240	530580	like? So, this is where I jump in. So, I want to do the same thing. So, I'm like probably
530800	534780	a zillion other people, probably a lot of other folks in this room. I wanted to check
534780	541660	out one of these commercial, you know, companies and get my stuff looked at, see what I could
541660	545700	find out. And, you know, I'm sure a lot of people have this kind of reasoning behind
545700	550500	it as well. You can imagine folks that maybe are adopted or maybe think they're adopted
550500	555900	or whatever. I have, my father's been out of the picture since I was like four. I know
555900	559460	nothing about his family. So, I thought, you know, aside from all of the other sort of
559460	562580	interesting things, maybe there's gaps there, there's interesting things there that might
562580	568740	be medical-related kind of things that I might be able to discover and help fill that gap
568880	574700	a little bit. So, I went and had it done. Oh, and let me mention too, and maybe some
574700	578380	of you guys are the same way. Also, the ancestry side, I was kind of like, you know, it'd be
578380	584940	very cool if I had some sort of hidden lineage, right? And, you know, I'm part like Cherokee
584940	590160	or, you know, I have like East African descent or something crazy like that, right? So, I
590160	596940	get all this done and I had that there as well. And so, one of the things, just so you
596940	602480	know, and that's why I have the picture that came out of this, is that I'm really, really
602480	612520	Caucasian. And it's... I was disappointingly Caucasian. I'm like translucent. I'm not
612520	618740	entirely sure that you can get any more, you know, white European than that and I was truly
618740	625100	disappointed. But the point I'm trying to make here is that you get all the information
625100	630920	from there and it's a pretty good set of information. And oftentimes, you'll find a little
630920	634400	tweak here, a little thing there that you're like, oh, you might have this thing or you might
634400	639720	be carrying this thing or, you know, there's all the ancestry bits. But it is very consumer
639720	645860	based, right? It's very high level. You can, in some cases, dig into things and I very much
645860	651400	recommend that. But also, there's other places you can take that data. And that's the purpose
651400	657900	here. If you look at the stuff above the line here, that's stuff from 23andMe. So, that's
657900	662340	just a snippet of some of my information. Super high level, right? It's a, hey, variant not
662340	666680	detected. You know, these items. Real easy to read, real easy to consume. I get that
666680	674560	understanding. Nice. Side note, you can download all of the SNP data, the raw SNP data. And
674560	678860	that's where, then you can take that raw SNP data and you can go and plug it into other
678860	687220	places. This one down here is Code... Code... Code... Who knows? Codegent. So, this one
687220	690060	down here is just an example of some of the stuff from Codegent. And it gives you an idea,
690060	695840	right? So, the, uh, the point here is, is, uh, you see that increased risk of type 2 diabetes?
696220	703080	That was nowhere in my, in my 23andMe one. So, different system, different analysis. You get
703080	706720	some, some, fill in some gaps. It's kind of cool. Another thing you might notice with the
706720	713320	search, look at the search bar. That's searching your SNPs for references to all kinds of
713320	720540	things. Uh, chemicals, drugs, diseases, uh, and obviously the, the genes themselves. So, if you
720540	726380	have a specific interest, hey, am, am I, is there issues with me drinking alcohol? Am I, am I
726380	732180	predisposed to being an alcoholic? That might be a, a, an easy way to dig into it. Um, again,
732180	737660	the point here is there are some simple places, simple ways you can get to, um, more data. You
737660	741560	can fill your data up. You, I mean, you can, you can fill those gaps a little bit. And the
741560	745360	nice thing about this one as well, you can dig in a little bit more deeply. You can drill in. Um,
745360	751100	and there's, there's many, many more. Some of them are free. Some of them are not free. Um, so
751100	756720	what, next, what's the moral of the story? Moral of the story is information is power, right? We
756720	760460	all want, we want more information. Uh, the more information you have, the stronger you can
760460	767800	be. But... Not just that, if you know your genetic code, if you know your predispositions, if I
767800	772220	had known mine, perhaps I never would have taken those birth control pills and I wouldn't have
772220	777980	ended up in the hospital. So if you know ahead of time, you're armed. Information is power. It's
777980	785620	also not all, not all information is power. Um, me being the hacker mentality that I have, um,
785620	790320	well my doctor doesn't really know what I need. I know my genetic code now, mostly. I'm gonna,
790320	794820	I'm gonna fix this. So I go on the internet and I look at other people who've contributed
794820	800040	information. This is what you need to do, this is how you get from under-methylating, like I am,
800040	807000	to a normal state. So I can repair my DNA, I can do all of those good things. Well, it didn't
807000	813280	work out so well for me there either. Um, I took all the right form of vitamins and, um, one day
813280	820340	I'm taking these vitamins and I hit the floor. I pass out. Um, me not learning very quickly, I do
820340	825700	it again the next day, I pass out. Clearly I need to stop taking these vitamins. I do and
825700	830420	everything's fine. But what happened is I, I, I changed the balance. I under-methylated and then
830420	837000	I over-methylated and it was just as bad. And in fact it was, it was very dangerous. So don't
837000	841480	read everything, don't believe everything you read on the internet. Not because it's wrong,
841480	848940	because it might be wrong for you. You need... Wait, what did I say? Did you just say don't
848940	858720	believe everything you read on the internet? And so what's important to take here is, yeah,
858720	862920	you need to be a steward of your own, your own health. You need to be educated. You need to be
862920	867600	knowledgeable. But you also need to enlist the help of a really good doctor. One that is
867600	873160	interested in helping you based on you. Not just what is normal. Um, they're really good at
873160	879320	treating sick. They're not so good at treating you specifically. But you need to help them. And
879320	883960	if you do that, you can, um, you can come to a much better place.
885540	890460	I'll also make the point that the title of the slide is how, or the other of the talk is how
890460	895800	your doctors are trying to kill you. Certainly hyperbole, the idea there is that you need to,
895800	903160	uh, be the steward of your own, your own health. Uh, doctors are there to, to do that as well.
903160	908180	Some doctors aren't, aren't hip to folks trying to help them out. And you know, maybe that,
908180	911600	and if that's what you're looking for, then you need to find another doctor.
914140	918560	A couple of, we want to touch on a couple of other things. Um, risk. Man, there are tons of
918560	923780	risk, right? And, and I think that, that this, this set of things here could be a three hour
923780	929480	panel discussion easily, right? Um, all of the ethical, uh, concerns, all of the security risk.
929480	937040	Here's the thing. I, I, this company generated SNP data for me. They have it. I have it, which
937040	941560	is nice. At least I have control of what I have. What control do they have? What are they going to
941560	946000	do with it over time? Who do they share it with? What happens when they get bought by another
946000	949960	company? What happens when the country that they're, that they're incorporated in gets, uh,
949960	954120	has a military coup and is now a fascist company or, you know, our country, you know, all of these
954120	958500	questions are, are significant questions and you have to ask yourself what you're comfortable with.
958500	967000	You also have to ask yourself, you know, what's the risk versus reward? Is this something, um,
967000	971780	these are difficult things, I think. Um, I don't, and we're not going to answer those things up
971780	980080	here, but just to say that we recognize that they're there. Oh, this is some of those, this is
980080	988620	another risk of some sort, right? Uh, oh, that's not my brother. Or, oh, this guy, uh, you know,
988620	991480	and what, what, how many, what's, where did these come from?
991960	997260	Sorry, this is from the 23andMe forums. This is just from one month alone. People saying, wow, I
997260	1001660	have a half sister I didn't know about. That's not my dad. And I thought it was. I think you have...
1001660	1007480	Yeah, yeah. So I have a friend who's a woman, she's, uh, in her seventies. Um, and she went and
1007480	1014600	had, uh, this done with ancestry and turns out her father was not her father. And I thought to
1014600	1021320	myself, that's a fantastic, that's an incredible thing to learn after, at, at 70. I mean, that's
1021320	1027400	70 years of this is who I am and now that's not who I was. That's crazy. And, you know, both of
1027400	1032900	her parents have passed away and her, her father, who she never knew was her father, has also
1032900	1037660	passed away. So there's no, like, there's not much to do there, but man, what a, what a
1037660	1043860	fantastic and crazy thing to have happened. So, uh, we'll just leave you with some resources.
1043860	1049900	And there are several, um, places that you can take that data and do more with that data. Um,
1049900	1054460	Live Wellow is an interesting one. That's the one with, oh, NutriHacker. No, NutriHacker is the
1054460	1059900	one that, uh, wait, which one is Live Wellow? The one that like will guide you through NutriHacker
1060400	1065940	will guide you through, uh, based on your, uh, genetic data will guide you through like life
1065940	1073160	decisions and, and, uh, uh, yeah, food, food choices and drug choices and those kinds of things
1073160	1080300	and give you some guidance based purely on your, on your DNA, which, you know, keep in mind
1080300	1086480	that's, that's basing a lot on maybe a little, so, you know, use some, use some common sense. Oh,
1086480	1093480	and then there's even some more deep stuff here. It's a little deeper. Yeah, so the, the
1093480	1098280	previous slide would show you how to, to get some pretty reports and really look at things from a
1098280	1104740	higher level, easy to read. Um, this is if you want to dig deeper, you can do so much with this
1104740	1109880	set of resources and this is not comprehensive by any means, but this can allow you to really dig
1109880	1114560	into the exact research that, um, that is involved with each of the SNPs or in each of your
1114560	1121620	variations. You can spend months just looking at probably one variation in your genome. Um, but
1121620	1126840	this is a really good place to start. Again, not comprehensive, but, um, I encourage you guys to
1126840	1134540	go out and, and learn about yourself. Yeah. So I don't know that we're the type that we can answer
1134540	1150730	any questions, but there isn't. Thank you. Yes. I'm just curious what the process is for these
1150730	1157950	companies. Um, what, what sort of, uh, generic material do you send them for testing and is it
1157950	1164650	possible to do it anonymously? Oh, anonymously is a good question. Oh, she, she must know
1164650	1170430	something. Yeah. So most of them are, are, are basically a spit culture of some sort and they
1170430	1174770	send you all this stuff. They make it super easy and you got to generate some level and you got to
1174770	1179730	spin into the same. I think it, you know, it feels like a court of spit, but it's really, uh, not
1179730	1185570	that much. What were we going to say about the anonymous? Oh yeah. So when I went into this
1185570	1191290	being a, you know, cyber security professional, I have concerns about my privacy tied to my, my
1191290	1198270	genetic DNA. Uh, I registered as anonymous, but one of the risks is how anonymous is
1198270	1202950	anonymous. And not only that, but to get the rich information, how much do you have to disclose
1202950	1210030	that you're, you're avoiding that anonymity? But there are ways to do it anonymously. Um, you
1210030	1215810	could just build your own lab. I'm sure we're not that far away from that. I'm hoping. Uh, it is
1215810	1259180	quite expensive now, but everything gets cheaper and cheaper. So, um, yeah. Yes. Yeah. Yeah.
1259180	1266400	That does sound like a talk. If you do that talk, I want to be there for that. Yeah. Um, I want to
1266400	1272800	know how, uh, how prevalent are SNPs, single nucleotide polymorphisms, and also, uh, how much,
1272800	1276520	uh, almost like what's the breadth, how much research is done on each variation, each
1276520	1282140	occurrence, and what's the odds of what you have actually being something significant? To answer
1282140	1288400	that, I want to go with how companies like 23andMe, um, sequence your, your genetic code. They
1288400	1293440	don't take, they don't see everything about you. There are certain common variations that they
1293440	1301760	test for, and they, they compare it to your DNA. And what, that's where the SNPs come in. So,
1302500	1307300	they're common. Uh, they're very common. Whether they're expressed or turned on or off is, is
1307300	1313180	another, uh, debate, but they're very common. Um, in fact, the, the, what I said, I have the
1313180	1319200	MTHFR homozygous C677D. Uh, about a third of you probably are the same. It's, it's pretty
1319200	1325120	common. Yeah, and I'll, and I'll say some of them are, you know, saying you have a mutation or a
1325120	1329500	variant, sometimes, you know, that can sound like something. Not only is there the issue of
1329500	1332960	expression and epigenetics, but there's also just the fact that sometimes it's just for
1332960	1339560	something goofy. Like, I can smell, uh, uh, asparagus in people's pee. So, uh, you know, it's,
1339560	1345740	it's nothing, nothing to be, like, to fret over necessarily. Veritas Genetics will do your entire,
1345740	1352300	uh, genome now for a thousand U.S. It's coming down. Are you thinking of doing that? Ooh. I am.
1352300	1359950	Yeah? Definitely. Plus, plus they're doing a lot. That's another interesting thing about these
1359950	1364890	companies too. Now they have this amazing data set, right? Um, and they're, they're now doing
1365670	1369790	correlations where they would have never known there was a correlation before. And it's, and
1369790	1373630	it's, and it's good. And some of it's goofy, but the, but the, the proof of concept is there and
1373630	1377270	they're fine. And they're, they're starting to get to the point where they can say based on
1377890	1384190	previous data that we've seen, we know that you have a 80% chance of, you know, something goofy,
1384190	1390950	cleft chin or something. Last question. Um, so great talk. Thanks very much for sharing your
1390950	1395770	personal stories. And one of the challenges of genetics is even if you do all of that,
1395770	1401810	you'll potentially not anonymous because we can find you. It's maybe five to 10 other factors
1401810	1408510	and we'll identify you. So the law currently says from a medical standpoint in this country,
1408510	1417210	you cannot be prevented from accessing preexisting condition. The challenge is that that's not true
1417210	1425050	from insurance and you can be declined insurance as a result of it, which makes what you've done
1425050	1432190	essentially a risk. Absolutely. Um, I've been fully sequenced. I've had a full genome sequence.
1432190	1438030	I've had 23 and me, um, as part of an exploration. And one of the challenges I find with that is
1438030	1443990	that there's a real disconnect with the data and the reality of exploring it. Certainly when it got
1443990	1450210	faxed to my general practitioner as a printed report, which was just preposterous to me. Um,
1450210	1457010	I, I'm just curious to know what you think about the impact that that's had on you or has it,
1457010	1462170	has that changed anything from your world in terms of... So I haven't, I haven't experienced
1462170	1467070	any explicit impact, uh, related to like, uh, insurance coverage and any of those kinds of
1467070	1470650	things. But that's an interesting question, right? That's one of the risks that we may have. It's
1470650	1473870	one of the things I don't know that we've solved. I think some people think it's solved. I don't
1473870	1481810	think it's really solved for sure. I, I'm one of the guys, um, that is more willing to be, I'm more
1481810	1488730	willing to give up more of my privacy to get more stuff out of, out of life. Um, I know that's
1488730	1496410	contrary to this, this whole crowd, but I'm, I'm, I'm kind of like, I'm kind of like Joe U.S. I'm,
1496410	1498450	I'm, I'm, I'm, I'm a guy that's gonna tell me some stuff and, and let's see what happens.
1499290	1503490	Security through obscurity, right? Um, and I think a lot of people are that way, but, and I
1503490	1508610	think that at the end of the day, there's some serious risk there. I, I don't know if that
1508610	1511050	answered your question. I haven't run into anything.
1511050	1516850	I think that's a fair comment. And ultimately, I think we all give up our privacy at the point
1516850	1522370	that we have a catastrophic illness or a condition because at that point, who cares? I need all
1522910	1528430	So, I think it's not an unreasonable, and I don't want anybody to stab me in this circumstance.
1528430	1533270	But at some point, you've got to give up something to get all of that.
1533790	1535610	And, you know, it's finding the balance.
1535750	1537250	Agreed. Nice.
1537330	1539450	Okay, I think that's it, folks. Thank you guys very much.