1 00:00:00,000 --> 00:00:08,320 Well, I do have some written things up here, but these two speakers are two of the best 2 00:00:08,320 --> 00:00:13,500 that we've had. And I feel if I would give them an introduction, it would be an insult. So 3 00:00:13,500 --> 00:00:19,360 here today, speaking on how your doctor might be trying to kill you and how personal 4 00:00:19,360 --> 00:00:26,720 genomics can save your life, ladies and gentlemen, Jen and Darren. Thanks a lot. 5 00:00:30,000 --> 00:00:34,880 Alright, so indeed, how your doctor might be trying to kill you and how personal genomics can 6 00:00:34,880 --> 00:00:43,320 save your life. So, just real quick, the idea here is that personal medicine, the drive to own 7 00:00:43,320 --> 00:00:49,280 your health a little bit more and working with your doctor is a big deal. You know, it's a 8 00:00:49,280 --> 00:00:53,260 half-hour talk. We just want to provide a couple of anecdotes to kind of drive that point home a 9 00:00:53,260 --> 00:00:58,240 little bit. And along the way, also, maybe give you some ideas and some information related to 10 00:00:58,240 --> 00:00:59,980 genomics and how personal genomics can save your life. So, thank you. 11 00:01:05,020 --> 00:01:17,280 Thank you. So, I'm going to hand it over to Mike. I'm going to hand the mic over to Jen. 12 00:01:18,560 --> 00:01:24,240 Thank you. So, before we really get into some of the details, there are some basics that we 13 00:01:24,240 --> 00:01:29,980 should go over. Just some terminology. Genome sequencing. When you see commercials like 23 and 14 00:01:30,000 --> 00:01:34,380 24, you know, I'm going to say that they're sequencing parts of your DNA. That's how you get 15 00:01:34,380 --> 00:01:40,000 information about your genome. Something that they will give you is called SNPs. Single 16 00:01:40,000 --> 00:01:46,680 nucleotide polymorphisms. The way to remember this is just where you vary from what is 17 00:01:46,680 --> 00:01:53,920 considered normal. So, your SNP might be that you have a variant that is defective or just not 18 00:01:53,920 --> 00:01:59,720 normal. And then you have personalized medicine or precision medicine. This is tailoring your 19 00:01:59,720 --> 00:02:05,480 medical prescription based on your DNA, based on your genetic code. And then there's gene 20 00:02:05,480 --> 00:02:12,200 expression. Just because you have some malfunction or some DNA variance does not mean it will 21 00:02:12,200 --> 00:02:17,140 actually be expressed. There's turning on of genes and turning off of genes. Just because you 22 00:02:17,140 --> 00:02:21,840 have something doesn't mean it will actually express or show. And then we have epigenetics. 23 00:02:21,980 --> 00:02:27,380 Your environment, things that you consume, alcohol, tobacco, can also affect you at a DNA level. 24 00:02:27,660 --> 00:02:29,700 It's very important to know because if you're going to be a geneticist, you're going to have to 25 00:02:29,720 --> 00:02:35,300 explore your own genome. You'll want to be very familiar that just because it says you have 26 00:02:35,300 --> 00:02:43,680 something that might be defective does not mean you actually have it. So, I want to share with 27 00:02:43,680 --> 00:02:51,960 you an experience that I've had with my personal genome and how it's affected my life. About ten 28 00:02:51,960 --> 00:02:58,620 years ago, one day, I developed a very severe headache. So severe, in fact, that when I went to 29 00:02:58,620 --> 00:02:59,700 bed, I was hoping that I was going to die. I was hoping that I was going to die. I was hoping that 30 00:02:59,720 --> 00:02:59,820 if I wasn't reagting to the message, I might damage my lymphed 울ty οι групп, 31 00:02:59,820 --> 00:03:00,120 thoseшаяş trap Disease Processing Again. Now, I heard some Umphs and jumping in praying. 32 00:03:00,460 --> 00:03:05,940 Please let me wake up in the morning. Now, here's a tip. If you're going to bed, praying that you 33 00:03:05,940 --> 00:03:10,480 wake up in the morning, you should probably be going to the hospital. But I just want to 34 00:03:10,480 --> 00:03:16,020 shake it off, I got this, and I tried to go to sleep until about five in the morning. It was very 35 00:03:16,020 --> 00:03:23,280 clear I needed medical attention immediately. So, rushed to the emergency room. I get there. I'm in 36 00:03:23,280 --> 00:03:28,500 in such excruciating pain, I can't even answer my doctor's questions. I can't even communicate 37 00:03:28,500 --> 00:03:35,060 with my doctor. So they give me a really, really good sedative, give me a good dose of Dilaudid, 38 00:03:35,180 --> 00:03:42,240 put me in an MRI, and took some pretty pictures. Here are two of them. And this is my brain. 39 00:03:42,980 --> 00:03:47,940 And as I come out of the MRI, feeling really good on Dilaudid, my doctor tells me, 40 00:03:47,940 --> 00:03:55,560 you have a two-inch blood clot in your brain. If you did not get here by now, you would be dead. 41 00:03:56,460 --> 00:04:03,420 So I wonder, how did this happen? As did my doctor. Being of a somewhat young age, 42 00:04:04,100 --> 00:04:07,000 developing a blood clot that large in your brain is not exactly normal. 43 00:04:07,980 --> 00:04:15,500 So he does some basic genetic testing on me, takes about 15 vials of blood, and comes back 44 00:04:15,500 --> 00:04:17,420 and tells me that, 45 00:04:18,020 --> 00:04:22,920 you know those commercials where they tell you about medicine, and it's about two seconds worth 46 00:04:22,920 --> 00:04:27,440 telling you what the medicine does, and the rest of the time is telling you how it could kill you, 47 00:04:27,580 --> 00:04:33,420 how you shouldn't take it with certain defects or certain, with alcohol or breathing oxygen? 48 00:04:34,040 --> 00:04:40,100 There's a reason for that. This is a typical medical disclaimer regarding birth control pills. 49 00:04:40,680 --> 00:04:46,560 And there's a lot here, but what's hidden in there, you should not take birth controls if you 50 00:04:46,560 --> 00:04:47,580 have a hereditary, 51 00:04:47,940 --> 00:04:52,860 or acquired predisposition for blood clots. Well, how do you even know if you do? 52 00:04:53,760 --> 00:05:01,040 If you haven't had your genetic testing done, you have no idea. So you might be taking medicine, or pills, or even 53 00:05:01,040 --> 00:05:06,280 vitamins that could actually be hurting you when you're not knowing it. So this is exactly what I had. 54 00:05:06,860 --> 00:05:13,360 I had been taking birth control pills, and I had a hereditary, or acquired predisposition. My doctor comes to me and says, 55 00:05:13,500 --> 00:05:17,920 congratulations, your homozygous C677T for MTHL-1, and you have a predisposition. 56 00:05:19,140 --> 00:05:21,860 And I'm like, what? What? What is that? 57 00:05:22,260 --> 00:05:29,420 So he tries to explain to me that it's something that a lot of people have, and that there is this pathway here. 58 00:05:29,840 --> 00:05:35,900 I'm not going to go into the details. This, everyone has, and this is responsible for many things. 59 00:05:36,000 --> 00:05:42,920 When this works properly, it is responsible for making DNA, maintaining your DNA, repairing your DNA, 60 00:05:44,020 --> 00:05:46,900 regulating gene expression, that's the turning on and off of genes. 61 00:05:47,940 --> 00:05:55,100 Regulating hormone function, regulating histamine levels, it's responsible for a lot of really important things in your life. 62 00:05:55,820 --> 00:05:58,420 So when this isn't working, what could go wrong? 63 00:05:59,300 --> 00:06:00,560 Well, apparently a lot. 64 00:06:02,000 --> 00:06:04,640 And this isn't even everything. 65 00:06:05,800 --> 00:06:12,220 If you have these mutations, and if you do not have the proper balance in that pathway, 66 00:06:12,460 --> 00:06:17,140 you could be under-methylating, not producing enough, or over. 67 00:06:17,940 --> 00:06:18,940 And that's too much. 68 00:06:19,000 --> 00:06:20,200 So there's no balance there. 69 00:06:20,280 --> 00:06:26,720 You could have any one of these things, including blood clots, which is lucky for me what I had. 70 00:06:28,060 --> 00:06:30,740 So I had some questions. 71 00:06:31,460 --> 00:06:34,140 And this is actually what my pathway looks like. 72 00:06:34,280 --> 00:06:37,480 And in medical terms, this is called severely jacked up. 73 00:06:37,640 --> 00:06:38,840 This is not good. 74 00:06:40,020 --> 00:06:43,020 So I do what I refer to as under-methylating. 75 00:06:43,140 --> 00:06:45,000 I don't do that properly. 76 00:06:46,560 --> 00:06:47,120 And... 77 00:06:47,940 --> 00:06:49,700 So my doctor says, here's what you got to do. 78 00:06:49,920 --> 00:06:50,660 Can't smoke. 79 00:06:51,540 --> 00:06:52,780 Don't take birth control pills. 80 00:06:53,200 --> 00:06:54,440 And you know what? 81 00:06:54,580 --> 00:06:55,640 You're of childbearing age. 82 00:06:55,720 --> 00:06:56,560 Take some folic acid. 83 00:06:56,760 --> 00:07:01,320 Take some multivitamins, just as general advice the doctors give, and sends me on my way. 84 00:07:02,860 --> 00:07:06,820 Fortunately, I don't follow directions very well, and I hate taking pills. 85 00:07:07,040 --> 00:07:08,400 So I didn't listen to him. 86 00:07:08,880 --> 00:07:10,300 I did not take folic acid. 87 00:07:10,460 --> 00:07:11,960 I did not take multivitamins. 88 00:07:12,100 --> 00:07:17,280 And it's a good thing, because actually, he did not mean to kill me with this advice. 89 00:07:17,940 --> 00:07:18,600 I'm sure he didn't. 90 00:07:18,620 --> 00:07:19,580 I like to think he didn't. 91 00:07:19,700 --> 00:07:21,300 I think I paid my bills on time. 92 00:07:22,160 --> 00:07:27,220 But what he was prescribing for me could potentially have killed me or put me back in the hospital. 93 00:07:27,580 --> 00:07:32,760 Because folic acid and multivitamins, in some forms, is actually poison to me. 94 00:07:33,480 --> 00:07:34,680 So good thing I didn't listen. 95 00:07:35,460 --> 00:07:37,260 I had to have some dental work done. 96 00:07:37,420 --> 00:07:41,980 I went to the dentist, and Mr. Dentist says, hey, would you like some nitrous oxide for 97 00:07:41,980 --> 00:07:42,220 this? 98 00:07:42,560 --> 00:07:45,660 It will make you feel mellow, make it a little easier for the procedure. 99 00:07:46,220 --> 00:07:46,620 Sure. 100 00:07:46,620 --> 00:07:46,680 Sure. 101 00:07:47,120 --> 00:07:48,340 Give me some nitrous oxide. 102 00:07:48,440 --> 00:07:49,160 I want to feel mellow. 103 00:07:49,200 --> 00:07:52,060 I want to enjoy this procedure instead of being in pain. 104 00:07:52,400 --> 00:07:54,300 So everything goes fine. 105 00:07:54,440 --> 00:07:55,100 Nothing happened. 106 00:07:55,340 --> 00:08:00,720 It was great, which is very fortunate, because there are many, many, many documented cases. 107 00:08:00,980 --> 00:08:05,800 People who did not know that they had some genetic defects that are contraindicated with 108 00:08:05,800 --> 00:08:10,260 nitrous oxide, and they did not leave the dentist office alive. 109 00:08:10,900 --> 00:08:12,960 So fortunately for me, I was fine. 110 00:08:13,380 --> 00:08:16,480 I had a friend who happens to have the same. 111 00:08:16,940 --> 00:08:20,380 She had the same genetic mutation as I do, and I told her I just went to the dentist. 112 00:08:21,180 --> 00:08:26,220 Fortunately for me, she was a lot more well-educated in her genetic mutation than I was at the time, 113 00:08:26,280 --> 00:08:29,640 and she told me, you need to research this. 114 00:08:29,860 --> 00:08:34,280 You need to really find out, because your doctor is giving you information that really 115 00:08:34,280 --> 00:08:37,860 is not helpful for you, and there's more that you need to learn. 116 00:08:38,620 --> 00:08:41,760 So it was clear I needed to learn more about my DNA. 117 00:08:42,260 --> 00:08:43,460 What is that process like? 118 00:08:45,180 --> 00:08:46,600 So this is where I jump in. 119 00:08:46,620 --> 00:08:49,540 So I want to do the same thing. 120 00:08:49,640 --> 00:08:52,980 So I'm like probably a zillion other people, probably a lot of other folks in this room. 121 00:08:53,040 --> 00:09:01,120 I wanted to check out one of these commercial genome companies and get my stuff looked 122 00:09:01,120 --> 00:09:02,000 at, see what I could find out. 123 00:09:02,180 --> 00:09:06,120 And I'm sure a lot of people have this kind of reasoning behind it as well. 124 00:09:06,260 --> 00:09:11,060 You can imagine folks that maybe are adopted or maybe think they're adopted or whatever. 125 00:09:11,380 --> 00:09:14,960 My father's been out of the picture since I was like four. 126 00:09:14,960 --> 00:09:16,960 I know nothing about his family. 127 00:09:17,200 --> 00:09:20,320 So I thought, you know, aside from all of the other sort of interesting things, maybe 128 00:09:20,320 --> 00:09:21,040 there's gaps there. 129 00:09:21,080 --> 00:09:26,520 There's interesting things there that might be medical-related kind of things that I might 130 00:09:26,520 --> 00:09:29,120 be able to discover and help fill that gap a little bit. 131 00:09:29,220 --> 00:09:30,540 So I went and had it done. 132 00:09:31,880 --> 00:09:36,700 Oh, and let me mention, too, and maybe some of you guys are the same way, also the ancestry 133 00:09:36,700 --> 00:09:40,400 side, I was kind of like, you know, it would be very cool if I had some sort of hidden 134 00:09:41,180 --> 00:09:41,900 lineage, right? 135 00:09:41,960 --> 00:09:43,960 And, you know, I'm part, like, Cherokee. 136 00:09:44,880 --> 00:09:44,940 Right? 137 00:09:44,960 --> 00:09:49,860 Or, you know, I have, like, East African descent or something crazy like that, right? 138 00:09:49,940 --> 00:09:52,640 So I get all this done and I had that there as well. 139 00:09:53,340 --> 00:09:59,240 And so one of the things, just so you know, and this way I have the picture, is that came 140 00:09:59,240 --> 00:10:03,240 out of this is that I'm really, really Caucasian. 141 00:10:04,860 --> 00:10:08,540 And it's, disappointingly, I was disappointingly Caucasian. 142 00:10:10,400 --> 00:10:11,400 I'm like translucent. 143 00:10:11,820 --> 00:10:14,720 I'm not entirely sure that you can get any more. 144 00:10:14,960 --> 00:10:17,440 You know, white European than that. 145 00:10:17,540 --> 00:10:19,080 And I was truly disappointed. 146 00:10:19,400 --> 00:10:25,500 But the point I'm trying to make here is that you get all the information from there. 147 00:10:25,600 --> 00:10:27,520 And it's a pretty good set of information. 148 00:10:28,060 --> 00:10:32,840 And oftentimes you'll find a little tweak here, a little thing there that you're like, 149 00:10:32,960 --> 00:10:36,460 oh, you might have this thing or you might be carrying this thing or, you know, there's 150 00:10:36,460 --> 00:10:37,700 all the ancestry bits. 151 00:10:37,880 --> 00:10:40,200 But it is very consumer-based, right? 152 00:10:40,260 --> 00:10:41,820 It's very high level. 153 00:10:42,620 --> 00:10:44,780 You can, in some cases, dig into things. 154 00:10:44,960 --> 00:10:46,620 And I very much recommend that. 155 00:10:46,960 --> 00:10:49,660 But also there's other places you can take that data. 156 00:10:49,900 --> 00:10:51,640 And that's the purpose here. 157 00:10:51,820 --> 00:10:56,620 If you look at the stuff above the line here, that's stuff from 23andMe. 158 00:10:57,160 --> 00:10:59,500 So that's just a snippet of some of my information. 159 00:10:59,740 --> 00:11:00,820 Super high level, right? 160 00:11:00,960 --> 00:11:02,680 It's a, hey, variant not detected. 161 00:11:02,880 --> 00:11:04,160 You know, these items. 162 00:11:04,400 --> 00:11:05,380 Real easy to read. 163 00:11:05,460 --> 00:11:06,100 Real easy to consume. 164 00:11:06,220 --> 00:11:07,000 I get that understanding. 165 00:11:07,440 --> 00:11:07,880 Nice. 166 00:11:09,200 --> 00:11:14,200 Side note, you can download all of the SNP data, the raw SNP data. 167 00:11:14,200 --> 00:11:18,620 And that's where, then you can take that raw SNP data and you can go and plug it into 168 00:11:18,620 --> 00:11:19,200 other places. 169 00:11:20,020 --> 00:11:23,840 This one down here is CodeGen. 170 00:11:24,480 --> 00:11:24,840 CodeGen. 171 00:11:25,280 --> 00:11:25,640 CodeGen. 172 00:11:25,640 --> 00:11:25,940 Who knows? 173 00:11:26,080 --> 00:11:26,200 CodeGen. 174 00:11:26,360 --> 00:11:26,720 CodeGen. 175 00:11:26,840 --> 00:11:29,020 So this one down here is just an example of some of the stuff from CodeGen. 176 00:11:29,120 --> 00:11:30,140 And it gives you an idea, right? 177 00:11:30,200 --> 00:11:35,360 So the point here is, you see that increased risk of type 2 diabetes? 178 00:11:36,180 --> 00:11:39,000 That was nowhere in my 23andMe one. 179 00:11:39,220 --> 00:11:41,040 So different system. 180 00:11:41,620 --> 00:11:42,340 Different analysis. 181 00:11:42,740 --> 00:11:43,340 You get some. 182 00:11:43,340 --> 00:11:44,480 Fill in some gaps. 183 00:11:44,700 --> 00:11:45,340 It's kind of cool. 184 00:11:45,500 --> 00:11:46,920 Another thing you might notice with the search. 185 00:11:47,040 --> 00:11:47,760 Look at the search bar. 186 00:11:48,240 --> 00:11:53,500 That's searching your SNPs for references to all kinds of things. 187 00:11:55,020 --> 00:11:59,920 Chemicals, drugs, diseases, and obviously the genes themselves. 188 00:12:00,180 --> 00:12:05,700 So if you have a specific interest, hey, am I, is there issues with me drinking alcohol? 189 00:12:05,780 --> 00:12:07,660 Am I predisposed to being an alcoholic? 190 00:12:08,120 --> 00:12:10,880 That might be an easy way to dig into it. 191 00:12:11,640 --> 00:12:13,320 Again, the point here is there are some. 192 00:12:13,340 --> 00:12:14,080 Some simple places. 193 00:12:14,160 --> 00:12:17,240 Simple ways you can get to more data. 194 00:12:17,420 --> 00:12:18,720 You can fill your data up. 195 00:12:18,840 --> 00:12:20,860 I mean, you can fill those gaps a little bit. 196 00:12:21,020 --> 00:12:22,520 And the nice thing about this one as well. 197 00:12:22,620 --> 00:12:24,000 You can dig in a little bit more deeply. 198 00:12:24,120 --> 00:12:24,720 You can drill in. 199 00:12:24,960 --> 00:12:26,660 And there's many, many more. 200 00:12:26,780 --> 00:12:27,500 Some of them are free. 201 00:12:27,620 --> 00:12:28,700 Some of them are not free. 202 00:12:30,700 --> 00:12:31,380 So what. 203 00:12:32,240 --> 00:12:32,600 Next. 204 00:12:32,800 --> 00:12:33,700 What's the moral of the story? 205 00:12:34,140 --> 00:12:35,800 Moral of the story is information is power. 206 00:12:36,020 --> 00:12:36,300 Right? 207 00:12:36,400 --> 00:12:37,120 We all want. 208 00:12:37,120 --> 00:12:38,240 We want more information. 209 00:12:38,740 --> 00:12:40,640 The more information you have, the stronger you can be. 210 00:12:41,240 --> 00:12:41,600 But. 211 00:12:42,960 --> 00:12:43,320 So. 212 00:12:43,320 --> 00:12:43,980 Not just that. 213 00:12:44,080 --> 00:12:45,640 If you know your genetic code. 214 00:12:45,680 --> 00:12:46,460 If you know your predispositions. 215 00:12:47,220 --> 00:12:48,340 If I had known mine. 216 00:12:48,540 --> 00:12:50,980 Perhaps I never would have taken those birth control pills. 217 00:12:51,260 --> 00:12:53,100 And I wouldn't have ended up in the hospital. 218 00:12:53,520 --> 00:12:54,820 So if you know ahead of time. 219 00:12:54,840 --> 00:12:55,320 You're armed. 220 00:12:56,000 --> 00:12:56,900 Information is power. 221 00:12:57,560 --> 00:12:59,040 It's also not all. 222 00:12:59,400 --> 00:13:00,860 Not all information is power. 223 00:13:01,940 --> 00:13:04,760 Me being the hacker mentality that I have. 224 00:13:05,360 --> 00:13:07,280 Well, my doctor doesn't really know what I need. 225 00:13:07,380 --> 00:13:08,760 I know my genetic code now. 226 00:13:08,900 --> 00:13:09,300 Mostly. 227 00:13:09,540 --> 00:13:10,180 I'm going to. 228 00:13:10,180 --> 00:13:11,040 I'm going to fix this. 229 00:13:11,260 --> 00:13:12,440 So I go on the internet. 230 00:13:12,560 --> 00:13:13,300 And I look at my genetic code. 231 00:13:13,300 --> 00:13:15,200 And I look at other people who have contributed information. 232 00:13:15,540 --> 00:13:16,840 This is what you need to do. 233 00:13:16,940 --> 00:13:19,840 This is how you get from under-methylating like I am. 234 00:13:19,920 --> 00:13:21,440 To a normal state. 235 00:13:21,640 --> 00:13:23,420 So I can repair my DNA. 236 00:13:23,780 --> 00:13:25,140 I can do all of those good things. 237 00:13:25,720 --> 00:13:26,200 Well. 238 00:13:26,460 --> 00:13:28,280 It didn't work out so well for me there either. 239 00:13:29,000 --> 00:13:31,540 I took all the right form of vitamins. 240 00:13:31,840 --> 00:13:34,160 And one day I'm taking these vitamins. 241 00:13:34,440 --> 00:13:35,720 And I hit the floor. 242 00:13:35,820 --> 00:13:36,440 I pass out. 243 00:13:37,940 --> 00:13:39,700 Me not learning very quickly. 244 00:13:39,820 --> 00:13:41,320 I do it again the next day. 245 00:13:41,420 --> 00:13:42,280 I pass out. 246 00:13:42,280 --> 00:13:44,720 Clearly I need to stop taking these vitamins. 247 00:13:45,020 --> 00:13:45,560 I do. 248 00:13:45,620 --> 00:13:46,260 And everything is fine. 249 00:13:46,560 --> 00:13:47,320 But what happened is. 250 00:13:47,800 --> 00:13:48,940 I changed the balance. 251 00:13:49,040 --> 00:13:49,820 I under-methylated. 252 00:13:50,000 --> 00:13:51,320 And then I over-methylated. 253 00:13:51,520 --> 00:13:52,700 And it was just as bad. 254 00:13:52,940 --> 00:13:55,520 In fact, it was very dangerous. 255 00:13:56,200 --> 00:13:57,600 So don't read everything. 256 00:13:58,020 --> 00:14:00,060 Don't believe everything you read on the internet. 257 00:14:00,320 --> 00:14:01,320 Not because it's wrong. 258 00:14:01,460 --> 00:14:03,180 Because it might be wrong for you. 259 00:14:04,500 --> 00:14:05,260 You need. 260 00:14:05,720 --> 00:14:06,160 Wait. 261 00:14:06,980 --> 00:14:07,780 What did I say? 262 00:14:07,980 --> 00:14:10,420 Did you just say don't believe everything you read on the internet? 263 00:14:10,560 --> 00:14:10,640 No. 264 00:14:10,640 --> 00:14:10,720 No. 265 00:14:10,720 --> 00:14:12,360 Believe everything you read on the internet. 266 00:14:12,420 --> 00:14:12,940 It's all true. 267 00:14:13,180 --> 00:14:13,340 Okay. 268 00:14:13,380 --> 00:14:13,540 Cool. 269 00:14:15,220 --> 00:14:20,220 And so what's important to take here is, yeah, you need to be a steward of your own 270 00:14:20,220 --> 00:14:20,900 health. 271 00:14:21,180 --> 00:14:22,180 You need to be educated. 272 00:14:22,400 --> 00:14:23,160 You need to be knowledgeable. 273 00:14:23,400 --> 00:14:26,420 But you also need to enlist the help of a really good doctor. 274 00:14:26,640 --> 00:14:30,060 One that is interested in helping you based on you. 275 00:14:30,140 --> 00:14:31,400 Not just what is normal. 276 00:14:31,920 --> 00:14:33,760 They're really good at treating sick. 277 00:14:34,180 --> 00:14:37,240 They're not so good at treating you specifically. 278 00:14:37,620 --> 00:14:38,860 But you need to help them. 279 00:14:38,980 --> 00:14:39,960 And if you do that. 280 00:14:40,640 --> 00:14:43,400 You can come to a much better place. 281 00:14:45,440 --> 00:14:51,260 I'll also make the point that the title of the talk is how your doctors are trying to 282 00:14:51,260 --> 00:14:51,620 kill you. 283 00:14:51,900 --> 00:14:53,220 Certainly hyperbole. 284 00:14:53,280 --> 00:14:58,480 The idea there is that you need to be the steward of your own health. 285 00:15:00,320 --> 00:15:03,080 Doctors are there to do that as well. 286 00:15:03,120 --> 00:15:06,940 Some doctors aren't hip to folks trying to help them out. 287 00:15:07,180 --> 00:15:08,040 And maybe that. 288 00:15:08,120 --> 00:15:10,060 And if that's what you're looking for. 289 00:15:10,120 --> 00:15:10,620 Then you need to find a doctor. 290 00:15:10,620 --> 00:15:11,220 You need to find another doctor. 291 00:15:14,320 --> 00:15:16,500 We want to touch on a couple of other things. 292 00:15:17,100 --> 00:15:17,500 Risk. 293 00:15:17,680 --> 00:15:18,700 Man, there are tons of risks. 294 00:15:18,840 --> 00:15:24,860 And I think that this set of things here could be a three-hour panel discussion easily. 295 00:15:25,660 --> 00:15:27,880 All of the ethical concerns. 296 00:15:28,220 --> 00:15:29,340 All of the security risks. 297 00:15:29,460 --> 00:15:29,900 Here's the thing. 298 00:15:31,320 --> 00:15:34,740 This company generated SNP data for me. 299 00:15:35,300 --> 00:15:36,180 They have it. 300 00:15:36,280 --> 00:15:36,900 I have it. 301 00:15:36,940 --> 00:15:37,320 Which is nice. 302 00:15:37,360 --> 00:15:39,240 At least I have control of what I have. 303 00:15:39,240 --> 00:15:40,920 What control do they have? 304 00:15:41,000 --> 00:15:42,480 What are they going to do with it over time? 305 00:15:42,660 --> 00:15:43,760 Who do they share it with? 306 00:15:44,140 --> 00:15:46,360 What happens when they get bought by another company? 307 00:15:46,480 --> 00:15:51,200 What happens when the country that they're incorporated in has a military coup and is 308 00:15:51,200 --> 00:15:52,080 now a fascist country? 309 00:15:53,200 --> 00:15:55,640 All of these questions are significant questions. 310 00:15:55,800 --> 00:15:58,300 And you have to ask yourself what you're comfortable with. 311 00:15:58,500 --> 00:16:01,980 You also have to ask yourself what's the risk versus reward? 312 00:16:02,260 --> 00:16:04,760 Is this going to help me over time? 313 00:16:06,740 --> 00:16:08,440 These are difficult things, I think. 314 00:16:08,440 --> 00:16:13,460 And we're not going to answer those things up here, just to say that we recognize that 315 00:16:13,460 --> 00:16:13,820 they're there. 316 00:16:15,960 --> 00:16:17,540 Is there anything you want to get off this line? 317 00:16:18,460 --> 00:16:21,960 Oh, this is another risk of some sort, right? 318 00:16:23,160 --> 00:16:24,640 Oh, that's not my brother. 319 00:16:25,400 --> 00:16:27,040 Or oh, this guy. 320 00:16:29,800 --> 00:16:31,040 Where did these come from? 321 00:16:31,920 --> 00:16:33,960 Sorry, this is from the 23andMe forums. 322 00:16:34,060 --> 00:16:35,540 This is just from one month alone. 323 00:16:35,860 --> 00:16:38,360 People saying, wow, I have a half-sister I didn't know about. 324 00:16:38,440 --> 00:16:39,620 That's not my dad. 325 00:16:39,740 --> 00:16:40,460 And I thought it was. 326 00:16:40,620 --> 00:16:41,500 I think you have. 327 00:16:41,660 --> 00:16:42,080 Yeah, yeah. 328 00:16:42,160 --> 00:16:46,260 So I have a friend who's a woman, she's in her 70s. 329 00:16:46,540 --> 00:16:49,140 And she went and had this done with Ancestry. 330 00:16:49,520 --> 00:16:53,260 And turns out, her father was not her father. 331 00:16:53,760 --> 00:16:59,780 And I thought to myself, that's an incredible thing to learn at 70. 332 00:17:00,120 --> 00:17:05,760 I mean, that's 70 years of this is who I am, and now that's not who I was. 333 00:17:05,800 --> 00:17:06,380 That's crazy. 334 00:17:06,380 --> 00:17:08,740 And both of her parents have passed away. 335 00:17:08,940 --> 00:17:13,340 And her father, who she never knew was her father, has also passed away. 336 00:17:13,460 --> 00:17:16,280 So there's not much to do there. 337 00:17:16,380 --> 00:17:19,200 But man, what a fantastic and crazy thing to have happened. 338 00:17:21,040 --> 00:17:23,260 So we'll just leave you with some resources. 339 00:17:23,360 --> 00:17:29,040 Again, there are several places that you can take that data and do more with that data. 340 00:17:29,720 --> 00:17:31,300 Live Wello is an interesting one. 341 00:17:31,440 --> 00:17:32,680 That's the one with, oh, NutriHacker. 342 00:17:32,760 --> 00:17:36,240 No, NutriHacker is the one that, wait, which one? 343 00:17:36,240 --> 00:17:37,020 Is it Live Wello? 344 00:17:37,080 --> 00:17:38,840 The one that, like, will guide you through... 345 00:17:38,840 --> 00:17:39,200 NutriHacker. 346 00:17:39,420 --> 00:17:39,860 NutriHacker. 347 00:17:40,100 --> 00:17:45,900 Will guide you through, based on your genetic data, will guide you through, like, life 348 00:17:45,900 --> 00:17:47,200 decisions and... 349 00:17:48,580 --> 00:17:49,540 What to avoid. 350 00:17:49,680 --> 00:17:54,120 Yeah, food choices and drug choices and those kind of things, and give you some guidance 351 00:17:54,120 --> 00:18:02,820 based purely on your DNA, which, you know, keep in mind, that's basing a lot on maybe 352 00:18:02,820 --> 00:18:03,160 a little. 353 00:18:03,240 --> 00:18:05,320 So, you know, use some common sense. 354 00:18:06,240 --> 00:18:10,940 Oh, and then there's even some more deep stuff here, a little deeper. 355 00:18:12,300 --> 00:18:17,340 Yeah, so the previous slide would show you how to get some pretty reports and really 356 00:18:17,340 --> 00:18:19,680 look at things from a higher level, easy to read. 357 00:18:20,700 --> 00:18:22,860 This is if you want to dig deeper. 358 00:18:23,020 --> 00:18:27,300 You can do so much with this set of resources, and this is not comprehensive by any means, 359 00:18:27,420 --> 00:18:33,360 but this can allow you to really dig into the exact research that is involved with each 360 00:18:33,360 --> 00:18:35,080 of the SNPs or in each of your variations. 361 00:18:35,080 --> 00:18:41,880 You can spend months just looking at probably one variation in your genome, but this is 362 00:18:41,880 --> 00:18:42,960 a really good place to start. 363 00:18:43,180 --> 00:18:48,800 Again, not comprehensive, but I encourage you guys to go out and learn about yourself. 364 00:18:50,440 --> 00:18:55,720 Yeah, so I don't know that we're the type that we can answer any questions, but I guess 365 00:18:55,720 --> 00:18:57,200 we could take a question or two if there is any. 366 00:18:57,480 --> 00:18:58,040 Thank you. 367 00:18:59,100 --> 00:18:59,540 Yes. 368 00:19:08,460 --> 00:19:11,140 I'm just curious what the process is for these companies. 369 00:19:12,540 --> 00:19:18,900 What sort of genetic material do you send them for testing, and is it possible to do 370 00:19:18,900 --> 00:19:19,620 it anonymously? 371 00:19:21,360 --> 00:19:22,860 Ooh, anonymously is a good question. 372 00:19:23,400 --> 00:19:24,840 Oh, she must know something. 373 00:19:24,940 --> 00:19:30,820 Yeah, so most of them are basically a spit culture of some sort, and they send you all 374 00:19:30,820 --> 00:19:31,140 the stuff. 375 00:19:31,220 --> 00:19:32,080 They make it super easy. 376 00:19:32,580 --> 00:19:34,380 And you've got to generate at some level. 377 00:19:34,380 --> 00:19:35,320 And you've got to spit into this thing. 378 00:19:35,440 --> 00:19:40,140 And I think it feels like a quart of spit, but it's really not that much. 379 00:19:41,100 --> 00:19:42,600 What were we going to say about the Anonymous? 380 00:19:42,700 --> 00:19:42,900 Oh, yeah. 381 00:19:44,180 --> 00:19:50,360 So when I went into this being a cybersecurity professional, I have concerns about my privacy 382 00:19:50,360 --> 00:19:52,480 tied to my genetic DNA. 383 00:19:53,280 --> 00:19:58,520 I registered as anonymous, but one of the risks is how anonymous is anonymous. 384 00:19:58,860 --> 00:20:03,460 And not only that, but to get the rich information, how much do you have to disclose that you're 385 00:20:03,460 --> 00:20:05,240 voiding that anonymity? 386 00:20:05,340 --> 00:20:08,400 But there are ways to do it anonymously. 387 00:20:09,420 --> 00:20:11,120 You could just build your own lab. 388 00:20:11,280 --> 00:20:14,740 I'm sure we're not that far away from that, I'm hoping. 389 00:20:15,020 --> 00:20:18,320 It is quite expensive now, but everything gets cheaper and cheaper. 390 00:20:18,680 --> 00:20:19,840 So yeah. 391 00:20:20,960 --> 00:20:21,880 If I may? 392 00:20:22,160 --> 00:20:22,560 Yes. 393 00:20:22,620 --> 00:20:29,560 Having been genetically tested, if you're a clever hacker, do you think there are ways 394 00:20:30,140 --> 00:20:33,440 to get the samples, literally, to get the samples? 395 00:20:33,460 --> 00:20:34,740 If you're a clever hacker, do you think there are ways to get the samples, literally, rerouted 396 00:20:34,740 --> 00:20:36,700 through physical relays? 397 00:20:37,400 --> 00:20:41,740 You can use pseudonyms, you can use burner cards. 398 00:20:42,780 --> 00:20:49,460 And you can access things through Tor, etc. 399 00:20:50,160 --> 00:20:54,460 It's just, how anonymous do you really want to be? 400 00:20:54,800 --> 00:20:56,760 Is it worth the hassle? 401 00:20:57,220 --> 00:20:58,220 That sounds like talk. 402 00:20:58,360 --> 00:21:00,140 Yeah, that does sound like a talk. 403 00:21:00,920 --> 00:21:03,080 If you do that talk, I want to be there for that. 404 00:21:05,300 --> 00:21:10,220 I want to know how prevalent are SNPs, single nucleotide polymorphisms? 405 00:21:10,480 --> 00:21:15,560 And also, how much, almost like what's the breadth, how much research is done on each 406 00:21:15,560 --> 00:21:20,660 variation, each occurrence, and what's the odds of what you have actually being something 407 00:21:20,660 --> 00:21:21,120 significant? 408 00:21:21,440 --> 00:21:27,720 To answer that, I want to go with how companies like 23andMe sequence your genetic code. 409 00:21:27,900 --> 00:21:30,640 They don't see everything about you. 410 00:21:30,640 --> 00:21:36,840 There are certain common variations that they test for, and they compare it to your DNA. 411 00:21:37,440 --> 00:21:39,420 And that's where the SNPs come in. 412 00:21:41,840 --> 00:21:43,180 So they're common. 413 00:21:43,660 --> 00:21:44,640 They're very common. 414 00:21:44,740 --> 00:21:50,220 Whether they're expressed or turned on or off is another debate, but they're very common. 415 00:21:50,440 --> 00:21:55,640 In fact, what I said, I have the MTHFR homozygous C677D. 416 00:21:55,860 --> 00:21:57,880 About a third of you probably are the same. 417 00:21:58,000 --> 00:21:59,500 It's pretty common. 418 00:21:59,980 --> 00:22:00,500 Yeah. 419 00:22:01,280 --> 00:22:05,600 And I'll say some of them are, you know, saying you have a mutation or a variant, sometimes 420 00:22:05,600 --> 00:22:07,160 that can sound like something. 421 00:22:07,960 --> 00:22:11,900 Not only is there the issue of expression and epigenetics, but there's also just the fact 422 00:22:11,900 --> 00:22:16,760 that sometimes it's just for something goofy, like I can smell asparagus in people's pee. 423 00:22:17,280 --> 00:22:22,160 So you know, it's nothing to be like, to fret over necessarily. 424 00:22:23,680 --> 00:22:28,120 Veritas Genetics will do your entire genome now for 1,000 U.S. 425 00:22:28,220 --> 00:22:29,140 It's coming down. 426 00:22:29,140 --> 00:22:30,720 Are you thinking of doing that? 427 00:22:30,980 --> 00:22:31,380 Ooh. 428 00:22:31,580 --> 00:22:31,880 I am. 429 00:22:32,160 --> 00:22:32,560 Yeah? 430 00:22:32,800 --> 00:22:33,200 Definitely. 431 00:22:33,440 --> 00:22:34,920 I want to know what I don't know. 432 00:22:35,360 --> 00:22:35,760 Okay. 433 00:22:36,960 --> 00:22:38,320 Plus they're doing a lot. 434 00:22:38,440 --> 00:22:40,560 That's another interesting thing about these companies, too. 435 00:22:40,660 --> 00:22:42,320 Now they have this amazing data set, right? 436 00:22:42,820 --> 00:22:48,140 And they're now doing correlations where they would have never known there was a correlation 437 00:22:48,140 --> 00:22:48,460 before. 438 00:22:48,880 --> 00:22:55,220 And some of it's goofy, but the proof of concept is there, and they're starting to get to the 439 00:22:55,220 --> 00:22:55,880 point where they can say. 440 00:22:56,400 --> 00:22:59,120 Based on previous data that we've seen. 441 00:22:59,120 --> 00:23:05,100 We know that you have a 80% chance of something goofy, like cleft chin or something. 442 00:23:05,880 --> 00:23:06,680 Last question. 443 00:23:08,180 --> 00:23:09,320 So great talk. 444 00:23:09,420 --> 00:23:11,720 Thanks very much for sharing your personal stories. 445 00:23:11,860 --> 00:23:16,660 And one of the challenges of genetics is even if you do all that, you're potentially not 446 00:23:16,660 --> 00:23:18,580 anonymous because we can find you. 447 00:23:19,180 --> 00:23:23,600 It's maybe five to 10 other factors and we'll identify you. 448 00:23:23,860 --> 00:23:28,480 So the law currently says from a medical standpoint in this country. 449 00:23:29,200 --> 00:23:34,300 You cannot be prevented from accessing pre-existing condition. 450 00:23:34,640 --> 00:23:38,080 The challenge is that that's not true from insurance. 451 00:23:39,200 --> 00:23:45,560 And you can be declined insurance as a result of it, which makes what you've done essentially 452 00:23:46,220 --> 00:23:46,980 a risk. 453 00:23:47,160 --> 00:23:47,580 Absolutely. 454 00:23:48,100 --> 00:23:49,940 I've been fully sequenced. 455 00:23:50,080 --> 00:23:51,940 I've had a full genome sequence. 456 00:23:52,020 --> 00:23:55,960 I've had 23andMe as part of an exploration. 457 00:23:56,020 --> 00:23:58,460 And one of the challenges I find with that is that there's a real risk. 458 00:23:58,460 --> 00:24:03,700 There's a real disconnect with the data and the reality of exploring it, certainly when 459 00:24:03,700 --> 00:24:08,120 it got faxed to my general practitioner as a printed report, which was just preposterous 460 00:24:08,120 --> 00:24:08,280 to me. 461 00:24:10,660 --> 00:24:16,800 I'm just curious to know what you think about the impact that that's had on you or has it. 462 00:24:16,920 --> 00:24:20,220 Has that changed anything from your world in terms of... 463 00:24:20,220 --> 00:24:26,820 So I haven't experienced any explicit impact related to insurance coverage and any of those 464 00:24:26,820 --> 00:24:27,200 kind of things. 465 00:24:27,260 --> 00:24:28,360 But that's an interesting question. 466 00:24:28,360 --> 00:24:30,480 That's one of the risks that we may have. 467 00:24:30,560 --> 00:24:32,040 It's one of the things I don't know that we've solved. 468 00:24:32,240 --> 00:24:33,640 I think some people think it's solved. 469 00:24:33,700 --> 00:24:34,900 I don't think it's really solved for sure. 470 00:24:36,020 --> 00:24:41,160 I'm one of the guys that is more willing to be... 471 00:24:41,160 --> 00:24:46,800 I'm more willing to give up more of my privacy to get more stuff out of life. 472 00:24:47,920 --> 00:24:53,600 I know that's contrary to this whole crowd, but I'm kind of like Joe U.S. 473 00:24:53,620 --> 00:24:58,340 I'm, yeah, yeah, here, have some stuff and tell me some stuff and let's see what happens. 474 00:24:58,340 --> 00:25:00,640 Security through obscurity, right? 475 00:25:00,940 --> 00:25:02,600 And I think a lot of people are that way. 476 00:25:02,880 --> 00:25:05,700 And I think that at the end of the day, there's some serious risk there. 477 00:25:07,640 --> 00:25:09,240 I don't know if that answered your question. 478 00:25:09,500 --> 00:25:10,840 I haven't run into anything. 479 00:25:11,040 --> 00:25:12,520 No, I think that's a fair comment. 480 00:25:12,560 --> 00:25:17,680 And ultimately, I think we all give up our privacy at the point that we have a catastrophic 481 00:25:18,050 --> 00:25:19,320 illness or a condition. 482 00:25:19,420 --> 00:25:19,740 Absolutely. 483 00:25:19,740 --> 00:25:21,100 Because at that point, who cares? 484 00:25:21,340 --> 00:25:21,700 Right. 485 00:25:21,740 --> 00:25:22,940 I need all of the information. 486 00:25:23,000 --> 00:25:25,280 So I think it's not an unreasonable... 487 00:25:25,280 --> 00:25:27,980 I don't want anybody to stab me in this circumstance. 488 00:25:27,980 --> 00:25:28,320 But I think that's a fair comment. 489 00:25:28,320 --> 00:25:34,900 But at some point, you've got to give up something to get all of that, and it's finding 490 00:25:34,900 --> 00:25:35,360 the balance. 491 00:25:35,560 --> 00:25:35,920 But thank you. 492 00:25:35,920 --> 00:25:36,180 Agreed. 493 00:25:36,420 --> 00:25:36,780 Nice. 494 00:25:37,140 --> 00:25:37,500 Okay. 495 00:25:37,580 --> 00:25:38,160 I think that's it, folks. 496 00:25:38,240 --> 00:25:39,000 Thank you guys very much.