Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". Panel 1: What is the Consumer Interest in Genome-based Health Information?


MS. DYSON: That’s okay. (Inaudible).

DR. COWAN: Okay. Her gene -- well, and she knows that her genome was sequenced and published as one of ten volunteers on a personal genome project, so she’s got it both for personal and professional interest in this. And Esther will then introduce the other members of this panel. Each panelist will have an opportunity to make some comments. These are a little bit scripted just because we wanted to focus on the topics at hand, and then we will open this back up for questions and answers.Okay. Ms. Dyson, it’s all yours.

MS. DYSON: Great. Good afternoon. I’m not going to give a long talk, but what I am going to do is stand up here so that I can keep order. And I do want to keep order, not just for the panel, but for everybody. I really would like this to be interactive. So I want to start -- I know you’re not representative, but how many of you have had your genome sequenced in some form or other? Okay. How many of you would do it if it were free? And how many would never do it? Okay. If anybody changes their mind during the course of this panel, let us know because that would be interesting.

What we’re doing here today is having three panels, and ours is pretty much what the consumers want. The second panel is what the consumers are actually getting, and the third panel is what the consumers are going to get. So we’re trying not to step on each other’s toes too much, so any panel could talk about all these things. And what I’m going to do is have each panelist introduce him or herself -- you can read the bios, but there’s probably a little color or subtlety that’s missing -- and answer the questions that are in the book. They can spend maybe three, four minutes, I’m going to ask some follow-up questions, then we’re going to talk among ourselves, and then we’re going to bring in audience questions. If somebody can't restrain themselves out there, you can ask questions anytime because I want this to, as Michael said, the value comes from the dialogue so that’s what we’re going to try and do.            

We’re going to start with Rebecca Fisher, who is what has been missing in many of the public discussions, which is the actual voice of the consumer, the person concerned; and then Matt Holt, a well-known health blogger and (inaudible); and finally, Linda Avey, who is a co- founder of 23andMe. I’m not going to talk about my own bio except sort of by way of disclosure; I’m a member of the Board of 23 and Me so I’m going to be especially vicious. Rebecca.            

MS. FISHER: I don’t remember what I gave to you for the bio, so I’ll recap by saying that I’m a 47-year- old breast cancer survivor, BRCA1 positive, diagnosed at the age 31 in the early ‘90s.My two points today are meant to temper the rhetoric about the excitement about all that we are learning, which is not to say that I think it’s a bad thing; I think it’s a wonderful thing, but I see the naysayers that one of our presenters spoke about before as being more proceed-with-caution-sayers, and I think I agree with them. The reason that I agree with them is that most consumers are not familiar with the methods or even the vernacular surrounding genetic testing. The methods that are used and the clinical utility, the clinical validity, even the reagents that are being used, are words that belong to something very foreign to most people.            

I’m a medical librarian by training, so most of the terms come, you know, with difficulty but I can figure out what they mean and I can also figure out where to find out more about what they mean. But in this emerging world of genomic information, there’s a real gap between the information that someone can download and the information that someone actually needs to use to make valid decisions about his or her health.            

When my family became involved with linkage analysis in the early ‘90s, there was no BRCA1. BRCA1 was discovered in August of 1994. At that point, my family entered a research program at the University of Michigan which later moved to the University of Pennsylvania. I have two sisters, one older, one younger. They both were involved in the research and couldn’t wait for the results to be returned. As a result of their impatience, having seen me go through bilateral mastectomies, a bone marrow transplant, and two months of radiation, they went ahead and had prophylactic mastectomy, both of them. When the information came back from Myriad that our notation was on an intron, which, you know, that’s very odd for BRCA1 -- it was on an intron -- and it was not found in the research setting, so not all research methods are the same, which was news to us. But they were testing our mRNA, they were not testing our genomic DNA. Most consumers don’t get that difference. My sisters are still a little tiny bit upset that they don’t have any breasts, and I don’t blame them.            

The second issue that I’ll talk about briefly because I know Esther wants to move us on, is a friend that I have who is a banker. She’s a very bright woman, very capable, 49-years-old. Recently -- very recently, two weeks ago diagnosed with breast cancer -- Stage 1, but they didn’t get the margin so they were saying to her, “What do you want to do? Do you want to go back and get more surgery? Do you want to do another lumpectomy? Do you want a mastectomy?” We had a conversation at a Starbucks at which I was able to tell her about BRCA1 -- hadn’t heard about it -- and didn’t realize that this might be a risk factor for her. "Well, Joann (phonetic), what’s your family history?” I asked her. “Well, my sister had a glioblastoma when she was 18, my brother had lymphoma at 22.” I said, “Did you tell your doctor that?” She said, “Yeah, and he just moved on.” So what I’m suggesting today is that there is a gigantic gap between what someone can download, even what someone can find on OMIM -- even what someone can find in gene reviews or the new collaborations that are coming up. There is no person standing at the point of decision for that patient. The only person is going to be their genetic counselor or maybe a medical librarian or, God love them, the physician who took the time to learn that this is a subtle and nuanced world, and we should proceed with caution. We have no deadline. And those are my comments for you. Thanks. [APPLAUSE]            

MS. DYSON: Those are compelling stories, but the message I actually get from them is -- has very little to do with direct-to-consumer genetic testing and probably more with the overall level of knowledge not just among consumers, but among doctors and other people. And so what would your constructive advice to this room be about how to help solve some of these problems?            

MS. FISHER: Well, I guess I’d kind of disagree that it doesn’t have to do with it because no matter how you get the information, whether it’s direct-to-consumer or through a research setting like we did or from your physician, you are going to have information. What concerns me is the commoditization of human life. That concerns me greatly. And when a kit comes in the mail for you to turn in a cheek swab and there’s no human being there, oh, yes, “We have people on call 24 hours,” whatever -- that person is -- I’m just thinking that person is not going to be equipped. If your own doctor is not equipped, I have major concerns. And so I guess I side with the proceed-with-caution-sayers.            

MS. DYSON: But how do you get the doctor to be equipped?            

MS. FISHER: Well, that’s the dialogue. That’s what the problem is. Doctors, a lot of them, get their information and I see Father Fitzgerald out here -- he knows it as well as I -- at Georgetown University School of Medicine, in the cafeteria, that’s where they get their information. And that is something a medical librarian will rip her hair out over, but that is the reality.            

MS. DYSON: Okay. Well, we’ll definitely come back to that. Matthew, your turn.            

MR. HOLT: Sure. So let me in two-and-a-half minutes, if I can, say three things. I’m Matthew Holt, I write the health care blog, I run the Health 2.0 Conference, and I would be running a genomics direct-to- consumer genomics company in California; unfortunately, I’m not a blonde female which is a major requirement as we’ll find out later.            

First, a couple of things. People are going online to the web to get information because they want action and results out of what they’re getting. They want information which gets them to do something. And my major concern at the moment about direct-to-consumer genetic testing is it doesn’t necessarily give you something you can actually do out of it, but that’s a question I think that will evolve. And I think Eric Topol’s talk was very instructive about what’s going to be coming. But if we’re going to be waiting for the wider point, which is doctors to adopt all these new information technology and deliver it in a human and humane fashion to patients, we’re going to be waiting a long while. In fact, for all of Eric’s new graduates to graduate and come through the system in about 25 years, and by then we’ll be dead or close to it.            

So I believe that there is a lot that can be done online in terms of tools and advocacy, which will be emerging as either a market-based or maybe as a social insurance base to technology to come. So watch that. And to my mind, direct-to-consumer genomic testing is a big part of that.            

Second -- two other things that are worth saying very quickly. The first is that there’s been a lot of fuss about privacy online in general, and genomics in particular. And the major fuss that I can see is about the impact of disclosure of information. Unfortunately, we live in a world -- or live in a country and society in which the impact of information that you are not, you know, involuntarily disclosing but forced to disclose by insurance companies and others, can dramatically impact your life. If you apply for individual insurance coverage in most states in this country and you say you’re a particular disease, that either means you will pay a lot more for that insurance or you won't be able to get it at all. And that is out in the open and irrelevant to the current discussion. Now, my view is that we need to fix that first, and then work about genomics and privacy second.            

Secondly, there’s obviously a lot controversy in California and New York about the impact of, should consumers be able to go out and order these tests directly. So I am talking out of both sides of my mouth here. I’m a good Marxist -- chemist-trained Marxist and I believe in socialism and social insurance. And I also believe in understanding what’s cost effective in medicine and what’s not cost effective. I don’t think there should be a blank check but for the government to pay for all medical care, but I think that stuff that has been proven to be cost effective should be covered and it shouldn’t be impacted to the point of care by your -- the size of your wallet.            

So I believe in social insurance, and I don’t think it’s clear yet as to whether most genomic testing actually is cost effective, and I hope that the work that Eric and others do, will figure that out. But having said that, I don’t believe in trade protection. And, you know, if you are using the state and regulations as an attempt to protect a profession or your economic interest, you shouldn’t be able to do that if there is a better, cheaper way of getting things done. And I think that most of what we’re hearing at the moment in terms of restricting by state licensure and other types of regulations to restrict this kind of activity, as well as much other activity in health care falls into that bucket. So I think in the end, if consumers are going to be adopting genetic testing in a large-scale format, it’ll be done because it’s done in conjunction with the health care system and with their current relationships with physicians. And I think that all the direct-to-consumer testing companies here are either adopting that position or will adopt that position.

But nonetheless, it doesn’t mean it should have to be that way. So with that, I’ll shut up.

MS. DYSON: Okay. And how would you solve Rebecca’s problem of under-educated doctors, even if they don’t want anyone else doing it -- they’re not capable of doing it themselves?

MR. HOLT: Well, I mean, the first thing is you have to introduce some level of competition into that, and that could be competition from other doctors because there are doctors who will get educated and medical groups and organizations. And I will actually solve her problem a different way. I think there is a huge need in this country for medical advocates, and that’s a -- in my mind -- a perfectly fair commercial organization. There are enough Americans, you know, who have the money -- if you have the money to pay $1000 or $2000 for a genomic test, you certainly have the money to pay $50 or $100 a month for -- to handle advocacy issues for you. And I think that that market will develop. And this is one of the areas they’re going to develop it for.

MS. DYSON: And as a good Marxist, what do you think about the people who don’t have the money for that?

MR. HOLT: I think if they need it and its cost- effective, the government should pay for it.

MS. DYSON: If we can prove that it’s cost effective.

MR. HOLT: Well, I think, you know, at the moment, this is an entirely different debate.


MR. HOLT: In the moment, we pay for an awful lot of stuff that isn’t cost-effective and everybody knows that, and Medicare writes the check every month. And I think that should change, but that’s not what we’re here to discuss --

MS. DYSON: Okay. Fair enough.

MR. HOLT: -- (inaudible) on that, I can give you one, too.

MS. DYSON: You’re right. Let’s move on to Linda Avey.

MS. AVEY: Thanks, Esther. And thanks everyone for coming. This is a great group, it looks like. I’m excited to hear your questions. I come at this from a completely different direction, I guess. From Rebecca having worked in the research community for over 20 years and working very closely with people like Eric and people who are really trying to discover these genetic markers that hopefully someday could lead us to personalized medicine and personalized care. And it was while I was with technology companies like Affymetrix and Perlegen that we kept banging our head against the same wall of trying to identify enough people who could be part of large-scale studies so that we could make these discoveries very quickly and utilize all these great tools that are being developed. And it was because of that frustration that I was sitting around talking with colleagues at Affymetrix one day and, you know, how do we change this paradigm?

How do we move this beyond our current infrastructure of typically NIH grants that get funded to a very few PhD’s typically who put in applications for them, and a lot of times their budgets might get cut back so that they have to cut back the number of people they enroll in their studies. And it’s all about statistical power, and if you don’t have that, you don’t get to the endpoint you really need.

So I’m really sympathetic to Rebecca’s situation. What I feel we’re doing at 23andMe, is we’re really arming individuals with the information of their genomes, but we’re not really focusing so much on the specific test. But what we’re doing is giving our customers information about what’s coming out of the research community. And as Eric demonstrated, there’s just a flood of data coming out right now, but it’s research results. It’s not clinically validated yet. And that’s where we see what we’re doing now with 23andMe is providing a mechanism for taking these results and giving them back to our customers but then asking them -- let them be participants in a big part of this move from research into the clinic and let them tell us what diseases do you have? What problems are you having taking drugs? Did you have a severe reaction? And once we can compile all this information together, then hopefully we’ll get to the endpoints where people can start understanding it better, understand their own genomes, and then hopefully at the same time be working with the medical community. It’s going to take a very holistic effort, as was mentioned before. We need to work together as a community. No one player in this space is going to make this happen. So we’re very hopeful -- I myself personally, I wasn’t diagnosed with my WPW until I was 31.

I’ve had severe reactions to two different antibiotics, to a point where I had drug-induced lupus. This has got to stop happening. I don’t want my kids to have to go through the same problems that I’ve been going through all through my adult life. So it’s really a vision we have for the future, and we’re hoping that 23andMe will be a platform to really gather up this information and put it into the hands of the people it matters the most to.

MS. DYSON: Thanks. That was actually an answer to the third panel, which was, what do people get eventually? So let me ask you, what is it that -- because you’re the one on the panel who actually offers such a service; what is it that people want when the sign up for 23andMe? Why do they do it?

MS. AVEY: Well, we’re just starting to get information back now, and the early things we heard back were that they wanted more information. We started out with the section of our website called the Gene Journal, and this is where we do take these research results and we translate them to our customers -- what does this mean?

What were the SNPs that were found in these genes to be either an increased risk or a decreased risk for whatever that phenotype is? And when they saw this, they wanted more information. And so what we did is we broadened the categories for what information we’re reporting back with a lot of caveats around that where some studies are well designed, they have very large cohorts of people who are enrolled, and they are replicated in other populations.

So those are really the -- what we call the established research. But there’s still a lot of information that comes out in what we term preliminary research, which we put these caveats around it and we have a star rating system to make it very easy to understand for consumers how they should be looking and viewing this information.

And we’re now up to over 78 different Gene Journal articles from 14 in November. And that’s, you know, that seems to be satisfying people. And we’ve overheard people talking where they say, “Oh, that’s just a one-star study,” I -- you know, we’re already hearing that they’re starting to --

MS. DYSON: (Inaudible).

MS. AVEY: -- take this information in and discriminate based on how we’ve been able to categorize it for them.

MS. DYSON: So do you have any sense of how much people use it for the medical side and how much for the, like, the fun part -- your ancestry, seeing how you’re related to your siblings. That may change over time as more people sign up, more family members, but can you talk about that distinction?

MS. AVEY: Well, we just had a very interesting story come up where a woman who was -- she also had breast cancer in her 40’s and she’s been -- she’s a very well- educated, very articulate woman, and she took her information back from 23andMe to her oncologist. And I think she speaks to people at Memorial Sloan-Kettering and a few other clinical centers, but her interest was that she thought she was English, Irish, Methodist from her background, but it turned out her maternal haplogroup, which is information she found on the ancestry side of our tools, indicated that she might have some Jewish ancestry.

And so she wanted to take that information back to see, well, you know, I’d be interested to know, should I have the BRCA test because of, you know, I might have this part of my ancestry. So I think people are seeing this now all in context. It’s a very holistic way to look at your genome, and you can't really separate out the two.

MS. DYSON: Yeah. Well, let’s -- I want to come back to that because I think narcissism is actually underrated as a -- yeah. I see this happening -- I come not just from the health care world, but from a more general world where people are fascinated by the music they like, the travels they take, their financial information, and to some extent, your genome is just another piece of consumer information about how fascinating you are. And I think that’s real, I don't know -- whatever. I’d like to see if Rebecca has any response to what we just said.

MS. FISHER: To the narcissism comment?

MS. DYSON: No, the other thing.

MS. FISHER: I’m sorry. I missed it.

MR. HOLT: I have a mirror for you.

MS. FISHER: I’m for it. You mean, how --

MS. DYSON: No, the other stuff --

MS. FISHER: -- oh, everybody’s --

MS. DYSON: -- not just narcissism, yeah.

MS. FISHER: Oh, well, I wanted to say that I think 23andMe’s information support is really good, and I’ve looked at it and I think it’s a beautiful, beautiful effort. And so I also want to just say, I think the convergence thing that’s going on is really a great thing, and I’m very excited about it. My daughter has BRCA1 also, so it means a lot to us to have this information.

But I guess I just am still stuck on the fact that when I look out there, I don’t see what Matt referred to as, like, an advocate. I don’t see ombudsman, I don’t see that, and I’d like to see that.

MS. DYSON: Yeah. Well, I think -- I mean -- sorry, I’m not supposed to think, I’m the moderator. So let me ask a question. If nobody’s educated, does having more of this information out there, and especially information in the context of individuals, help people get educated so that there will be more advocates in the future? I mean, how otherwise can we foster this education happening?

MS. FISHER: That is an excellent question. And I think that what -- that question actually occurred to me over the weekend as well in slightly different form, but it’s kind of something that came to Africa having 50 countries and 34 of them have more cell phones than landlines. I mean, it’s kind of, like, you know, you don’t have a phone book anymore but you have all this connectivity. So I think what ends up happening is that you have to come at it from both angles and make sure that the information has an understanding under it. So it’s not just lots of this, but it’s a deep understanding. And I keep coming back to this term, legitimate complexity, because people don’t like that, but it’s real. And if we could somehow help people to understand, you know, we have a star system, we have an evidence system, we have a rating system. But guess what? It’s harder than that.

And we just need to somehow get people to understand that.

MS. DYSON: Okay. Let me try an audience question again. How many of you enjoyed studying statistics? Ah, this is not a representative audience. [LAUGTHER]

MR. HOLT: This is (inaudible).

MS. DYSON: How many of you found statistics easier to understand in the context of sports -- baseball averages, whatever? Okay. How many of you found it easier to understand in the context of your own genome?

Okay. Leading question, but anyway, it was a try. Do you --

MR. HOLT: (Inaudible) -- say something?

MS. DYSON: Yeah.

MR. HOLT: So there’s actually a really interesting comment. There’s a group called the Information Therapy Center in D.C., whose job it is is to try to help, or to force, depending which way you look at it -- the promotion of information as a therapy given at the end of each clinical encounter. Same as a prescription is given at the end of many clinical encounters. And they had a conference last year, and they actually had a group of sort of marketing people explaining how you would make information about health care fun and interesting. And I asked the question, which is, okay, if you have to do this at a sort of fourth grade reading level -- write information for health care that because people find it very complex at a fourth grade reading level, how is that, you know, you can do -- the sports pages can have this incredibly complex information about, you know, gun magazines, trucking magazines -- this stuff is written at, like, a, you know, post-graduate reading level and yet people get it. And part of it is interest. And interest in health care, unfortunately, correlates very much to, it matters to me now because I have whatever condition. And part of what’s going on in general in health care, especially with the evolution of the sort of the social networking and elsewhere, is that we’re seeing, you know, people helping each other through that explanation when something happens that matters because they typically have to make a decision.

I’ve just gone through this in my own household, trying to find a surgeon who could do a particular type of surgery, and there’s really very little good information out there. And I think it’s a two-step process. One is that we have to put out more and better information and more and better raw data, which means that data somehow has to be collected. And there’s only two ways it’ll be, sort of, forced out of the health care system; one is by regulation or one is by, sort of, consumer and payer demand. And both of those have been slow, but they’re both coming.

And the second thing is that once that’s out there, we’re going to see these advocates emerge. Now, at the moment they’re doing it kind of ad hoc, online, unpaid. If you look at the ACOR, which I’m sure, Rebecca, you’ve been involved in this. Which is the online American Cancer Online Resources -- did I get that right?

Which is, you know, a million-and-a-half emails sent out each month with people informing each other about cancer and all different types of cancer treatment. To me, that is, you know, unpaid advocacy. And what we haven’t yet had is the thing that we’ve had in financial services where, you know, there’s now Charles Schwab, you have people you can talk to who will help make, you know, the mumbo jumbo of the stock market explainable to you. And I think that’s going to happen, and if, you know, if the health care professions don’t start getting involved in that in a big way, Fidelity or Charles Schwab or somebody else will do it for them.

MS. DYSON: I just read a piece in the New York Times about some minors somewhere who were suing somebody for Morgan Stanley for giving them bad financial advice.

MR. HOLT: Look, no one’s going to say that all these advocates are going to get it right, or that there aren’t going to be self-interested, but that already happens now. I mean, let’s be honest about. We understand there is (inaudible) practice variation in most different types of medical care at the moment across the U.S., if not more. And, you know, it’s quite obvious that there’s self-interest going on there.

MS. DYSON: So maybe if you can go online and get a second opinion that’ll help?

MR. HOLT: That would be a very good start.

MS. DYSON: Okay. Linda.

MS. AVEY: Well, I think it’s -- this is one of the things that we are excited about is using the web to present very complex information because you can do it in layers and you can start out with, you know, kind of a ranking system that gives people, kind of, the first pass at the importance or the weight they should take that information. But then, what we’ve tried to do -- and we’re just at the beginning of this and we’re developing and hopefully improving our product every month that we have a new release -- but is to just build in these layers where if somebody wants to get down to the SNP level, the rs numbers that are part of a gene that were discovered in a paper, we even give the references to all the papers, it’s all there. But it’s just that we don’t necessarily want to confront everybody with it right up front, so having this layering system we think is proving to be a good model. And it’s something that if you put out the cookie crumbs for people, they will follow it to the level that they’re comfortable, but they don’t have to at the same time. So it’s really, really hard what we’re doing.

I’m sure Mari would say the same thing. And the folks from deCODE, that this is highly complex information, but, you know, just like the baseball statistics and everything else, we think people once they get familiar with it they’re going to be more comfortable with the information and they will start diving down deeper and deeper into it.

So we’re actually very excited and think it’s a huge opportunity to educate everyone and bring up the whole playing field so that we’re all ready for this day when we all hopefully have access to our genomes, whether it’s 5 years from now or 20 years from now, and we can take that information into our doctor and they’ll know what to do with that. But we can't sit and wait for that to happen.

If we wait for the medical community to be educated, you know, the Scripps Med School is one of the first, but I will be very curious to see how long it takes the other med schools to step up and decide, this is really important for our futures. And we, you know, we just don’t want to wait. And so this is one opportunity -- we think 23andMe is completely optional. You -- this is people signing up who are really interested in this information, and it is about you. It’s about you and your genome, and it is narcissistic in a lot of ways, but we’re human beings, we’re selfish creatures. That’s the way we operate. And we’re very selfish about our families.

We’ve talked to some people that, you know, initially when we were first starting the company whether or not they were interested and they said, “No way. I’m healthy. I’m fine.” And one of those guys had a son who was diagnosed with autism, and he came around full circle and said,“Sign me up. Sign up everybody in my family. Anything we can do, we are interested in participating.” So things change for people when there’s a change in their health, and they suddenly want more information.

Look at Michael J. Fox who, you know, turned is whole life around and created his foundation which is doing some amazing work. So we see that all the time, and it’s just -- it depends on where you catch someone in their life.

MS. DYSON: So you start off as a benefactor and become a beneficiary later. Let me -- I have one more question right now, but then I’d like to encourage you to raise your hands and the microphone people will show up.

So this question is kind of an essay question to a yes or no -- an essay response to a yes or no question. You take a person, they’re slightly overweight, they don’t exercise enough, they don’t get enough sleep, they drink too much, they’re your sort of typical person who knows --

MR. HOLT: You’re kidding me. [LAUGHTER]

MS. DYSON: -- who knows they should be behaving better. So now they go online and they get the results back. Maybe they don’t have a higher risk, maybe they have a lower risk -- do they -- how do they react? Does it make it easier for them to “behave better”? Do they say, “Oh, I’m at risk, I’m going to behave better,” or do they say, “Oh, I’m at risk, I guess I’ll stop even trying” if the risk was low. Can you just -- how do people actually respond? And anybody - -I mean, I’m sure you don’t have total data, but I’d like to hear how you think -- what the dynamics are.

MS. AVEY: Well, for us, it’s still early. You know, we just launched last November, and we are having a user gathering Tuesday night -- tomorrow night, which unfortunately, I’m going to miss. But we really do want to start gathering that data. We really do want to ask people, “What are you doing with this information?” and hopefully we’ll start learning that. And that will really help us shape our tools going forward of how can we make sure people are using this information properly, that they’re not over-using it, but that it’s also informative to them in ways hopefully that they can positively impact their lives. But we have heard, you know, one case where a guy who’s in his 30’s found out he had really high risk, you know, the highest risk that we can see with our SNPs that we have for Type 2 diabetes -- very healthy, fit, great shape, and found out through his wife going in -- because she was pregnant to be tested for gestational diabetes -- that he thought, “Oh, I’ll prick my finger, too.” And he found out his blood sugar levels were higher than hers, so for him it was a huge wake-up call that, you know, he just had no idea. And then he now is watching -- he works at Google, so he has to really watch the free food and, you know, has to be really careful about his intake. So it’s something that we’re hoping that, you know, as we can really stress the preventive measures that are positive things that people can do, certainly talking to their doctors about that. But, you know, like everyone says, we all know all the things we’re supposed to be doing. But when you see that you do have a bit of an increased genetic risk for something but you can do something with your environment, I think that empowers people even more.

MR. HOLT: Okay. You (inaudible) Esther, because that’s exactly what happened to me and that’s exactly what, you know, my situation when I had my genome tested. And I don’t know what to do because, yeah, I need to go to the gym more and I need to drink less and eat less, and the problem is I also have the life I have which involves, you know, I’d have to make some changes and -- better than I was ten years ago, but -- and this is the situation that most people are in. I mean, we’re probably in that -- what was the category from the Yankelovich, the sort of “Can try harder” --

MS. DYSON: Yeah.

MR. HOLT: You know, could be better, whatever it was. You know, a lot of people are like me in that situation, so it’s part of it. But this is part of a wider -- for most people, this is part of a wider issue, which is to do with, you know, general wellness, general lifestyle, all kinds of things which taken massive changes into behavior change, which we’re very, very bad at doing and there’s no support to help us do that because all the economic and cultural incentives are going in the wrong direction in this country. So, you know, to my mind, for most people, that’s how the direct-to-consumer genomic testing is going to be. It’s going to be, yeah, it kind of helps me, and maybe, you know, I did actually have -- you know, I did it with -- in conjunction with another test where I found I had a high blood sugar rating or whatever. But, you know, I’ve had my labs done recently and I’m basically in the normal range for most things, but I have some evident genomic risks. I don’t -- it’s hard for me to say, “Okay, I should change my life,” because of something absolutely urgent. But I think there’s another category of people -- and obviously, Rebecca, (inaudible) apply to you -- for whom it really does matter because it really is urgent and this stuff is absolutely crucial information about decisions they’re making today or now.

And so I think you have to look at those two categories of people different --

MS. DYSON: Right.

MR. HOLT: -- and then kind of assume that, yeah, fat 44-year-old guys who don’t get out and exercise enough, you know, that’s a more general problem and just knowing the genome isn’t going to solve that problem.

MS. DYSON: So the specificity of the information didn’t change your behavior?

MR. HOLT: No. Because I knew I should have been exercising more and drinking less anyway.

MS. DYSON: Okay. I mean, I personally have found I feel less embarrassed about avoiding fried foods and, you know, taking the fat out --

MR. HOLT: So the reason you were eating fried food was because, you know, you were embarrassed?

MS. DYSON: No. I’m less embarrassed. I still -- I don’t do it, but now I don’t feel embarrassed about taking the skin off the chicken, whatever, because I’m spending so much time with health care people. Rebecca.

MS. FISHER: Well, like Matt was saying, when my family gets sick, we really get sick. So I don’t know what I would think if just a casual finding came back, but I think it kind of speaks to the whole phone book in Africa thing, whereby, you know, the patient is going to be curious. I mean, for lack of a better word, they’re going to be curious so they’re going to agitate for more information and they’re going to bring that to their doctors. And the doctors are going to hopefully learn so that they can do their job better. And I think that’s actually a good thing.

MS. DYSON: Okay.

MS. FISHER: Thanks.

MS. DYSON: So do we have some questions here? Yes? Great. Can the mic people -- if you all raise your hands -- I don’t know how many mics there are, I’m going to try and -- Eric -- the beard over there and then the guy in the aisle. And remember to follow Michael’s instructions. Eric has already been introduced, but --

DR. TOPOL: Thanks very much, Esther. I -- just a few comments. I agree completely with Matt about the vacuum of people to help with patient advocacy. But I wanted to go on a couple point. One is in the diabetes story that you ran through and that Linda mentioned. That is that not only do we know about markers, but we now know different pathways of diabetes and we know if some are particularly sensitive to medicines that exist today that can be used to prevent the diabetes. So we haven’t done those types of studies to use Metformin or ACE inhibitors or (inaudible), so that’s opened up a whole new area is to finding the specific type of pathway that engenders risk of Type 2 diabetes.

And then I wanted to ask Rebecca, because Myriad was one of the early entries into this whole environment, and you would think that this test which costs $3500 or $4000, they would fess up and say, “This is not a classic mutation,” to have had it colored your experience of this intron perhaps private mutation in your family. Was that communicated? Because if it wasn’t, that was really unfortunate.

MS. FISHER: Dr., do you mean did Myriad communicate that it was on an intron?



DR. TOPOL: And that it wasn’t a classic, prior --


DR. TOPOL: -- described --

MS. FISHER: Yeah. I probably didn’t communicate it very well, but what happened was that the university setting was testing the mRNA. When it went to Myriad, when everybody got fed up with waiting, and it came back -- having paid the money -- they did disclose that. And they are the ones that told us that this had occurred. What’s interesting there -- and I’ll make this very brief, but Dr. Barbara Weber is a good friend of mine, and she was at Penn at the time. Her lab is the one that was testing the mRNA, not the genomic DNA. She felt that that was such an important aspect of the testing, that had a patient outcome, she brought me back to her med students for four years running to tell them story. So I don’t think she would mind my sharing that with you today.

MS. DYSON: Okay. The gentleman in the aisle and then the gentleman with the beard over there. Great.

DR. LICINIO: Hi. I’m Julio Licinio, I’m Chairman of Psychiatry at the University of Miami, and I’m also editor of two journals on Molecular Psychiatry and Pharmacogenomics Journal. So Molecular Psychiatry, which I started 13 years ago, I was just doing the back of the envelope numbers here, would probably publish, like, you know, 1500 papers in these 13 years. And I go over each one of them and (inaudible) the ones that are not accepted, so I probably went over 5000 papers in psychiatric -- most of them in psychiatric genetics, and there is a lot of, like, non-replication and things come now and then they’re not there and the (inaudible) now is this and then it’s that, and the relative risk, you know, is 2 percent, 10 percent, 20 percent, and varies from paper to paper. Then another one doesn’t find it and the field just goes, and that’s how we proceed because, you know, there’s always a new report proving or disproving or, you know, non-confirming or confirming something.

So my question is that even though the idea is very attractive, the issue of clinical validation, I find, is very troublesome, at least in some fields. I know that if you have the monogenetic gene if you have the, you know, breast cancer or something like that, but for common complex diseases, what comes out in research does not necessarily apply to a real life clinic. So I’d like to tell you just briefly, Linda, that I went to 23andMe to the site, I am the most technologically, you know, addicted person. I live in the internet, I do everything virtual, I go for everything new so I filled in everything, you know, pulled the (inaudible) in front. At the very last moment, you know, confirm this -- I didn’t confirm. I quit, which was the very first time I think in my life that I quit something that’s technologically based.

And my thinking was this: my family risk is heart disease, so everybody in my family has heart disease, people diet in their 40’s and have a little bit of some atypical pain and it’s a horrible heart attack and they die like flies. So anyway -- so my thinking -- and correct me if I’m wrong, is this: if I have a genetic predisposition, I am going to become more neurotic and I should lose weight and have a better life and exercise, et cetera. If I don’t have the risk, should I just be lazy and fat? So, which I don’t think I should. So I didn’t take the test and I dropped 14 pounds and I exercise very regularly, so I actually thank you for it, you know, for the service which I benefited from without being tested. [LAUGHTER]

And then my other concern is this. Are you 100 percent certain, you know, mathematically, you know, absolutely, you know, convinced that the data will not be hacked, stolen, passed on to somebody else, or, inadvertently, you know, gotten by some third-party? And that was another factor for me, so I thought, you know, it’s not really going to change my life because for me specifically, I don’t have any monogenetic disease -- we don’t have in the family (inaudible) complex, you know.

So for those, I have to do what I have to do anyway whether I have the risk or not.

MS. AVEY: Great.

DR. LICINIO: And then I have a potential problem with the privacy.

MS. DYSON: So, 100 percent? That was a question.

MS. AVEY: Well, first of all, I mean, just the -- you know, It’s interesting to hear that you went through the whole process and ended up not signing up. And that’s something that we like to hear, that people do go through and they really think about it . And if you decide at the end that it’s not for you, then you absolutely should not do it. So that’s -- it’s good to hear that people do come to that conclusion because we do say that this is not for everyone. And so one other thing that’s been interesting watching my father -- my -- on the male side of my family, the men also die like flies. And my dad is turning 79 at the end of this year, and he’s frankly shocked he’s still alive. He thinks he’s going to drop dead of a heart attack every single day. So it, you know, it’s different for every single person. And I think this is just an option that people have, who really are curious and do want the information that this is -- that we make this available to them. So, you know, I can't argue with your decision. And if it was helpful, I’m glad you went through the process, but --

MR. HOLT: I do think you should send him the $900 if you got fit anyway.

MS. AVEY: Yeah.

MS. DYSON: $999.

MS. AVEY: Or donate it to a charitable cause. But -- and then just on the security of the data, you know, we put so many measures into place. And I think the banking industry has done a phenomenal job of really developing online tools that people have gotten comfortable with. You know, when we first came out with websites to buy things online I think people were very afraid to spend to money, but they’re, you know, “I’m going to put my credit card online?” and what we notice is that people question new things. But if you look back at the old way of doing things, it’s just as, you know, there are just as many issues. If you let someone walk away with your credit card in a restaurant, who knows what they could go buy? So it’s something that, you know, I think we really are very concerned about that and we look to other industries that have already played in this space and have developed a lot of the technologies and we -- you know, we -- that’s first and foremost for us is the maintaining the privacy and the security of our customers data. But that said, what we’re also finding is that because we allow people to share certain portions of their genome -- we have two different levels of sharing, either more the modest and the basic versus a little bit more extended sharing -- almost -- it seems like we’re, you know, a lot of people are opting into that. So it does seem like the minute people get their genetic information -- and we find this within 23andMe, that the minute a new paper comes out, we’re all running around the office, “What do you have? Here’s what I have.” And people want to know, you know, what do you have, what are your risks for something, and it’s -- I think it’s going to become more the common vernacular, that people are going to start talking about this.

MS. DYSON: Yeah. Okay.

MR. HOLT: Can I just jump on that privacy --

MS. DYSON: Sure. Yeah.

MR. HOLT: -- thing for a second because that’s really important to realize, that there is a big divide amongst consumers about this. And there’s another company which is not in the genetics space, but (inaudible) patients like me -- MS. DYSON: Yeah.

MR. HOLT: -- which has -- which many of you may be aware, which is the social network for people with very severe chronic conditions like Parkinson’s and ALS, and they’re very explicit there. When you sign up for this site, you are going to be giving to other people in that community but basically anybody can join, incredibly detailed information about incredibly personal parts of your life when you have that disease. And yet they’ve found that people have found it so valuable that they’re sharing all kinds of (inaudible) about themselves. And it comes back to the core problem, what if this data got out?

Because, you know, banks do get robbed, sites do get hacked, data does get left around, even though, you know, we know that happens -- what is the possible consequence of this data getting out? And I think the main issue here is most people in this country are mostly concerned about their future ability to get access to health care and access to health insurance. And that’s a separate problem which we need to fix anyway.

MS. DYSON: Yeah. Then I must say, I was really disappointed. I -- my COBRA ran out last month, so I went through the process of getting personal individual insurance. And I asked these guys, “Would you like a copy of genome?” And none of them wanted it.

MR. HOLT: None of them have a clue what to do with it. They (inaudible) --

MS. DYSON: So --

MS. AVEY: On the flip side, I just want to throw something else in because the -- it seems that the government and the NIH’s answer to, you know, being -- full disclosure and being transparent, is putting a lot of genetic profiles on the web. And dbGaP is a place now that’s going to be collecting all of these bits of information on many, many people. And to me, what seems to get lost is who are the people whose genomes are being put out on the web. And if you talk to people like Neil Risch and others that are statistical geneticists, they will say, “With about two SNPs and a little bit of phenotypic information, I can identify that person and suddenly I have their entire genome.” So this answer that we’re putting out de-identified information -- you can't de-identify --

MS. DYSON: Yeah.

MS. AVEY: -- genetic information. So, you know, I think it’s more important that the consumer maintains the control of their information. If they want to share it, it’s completely up to them, but to have this answer that it’s going to be -- that you sign up for a study, you kind of sign away your life and your genome goes up on the web, we just don’t know that that’s a viable option.

MS. DYSON: Over here. And then the --

UNKNOWN: Yeah. I’d like to respond to that.

MS. DYSON: -- purple shirt.

MR. PODOLSKY: Doug Podolsky, Consumer Reports. Linda, have you found that your customers want genetic counseling, and do you offer one-on-one genetic counseling?

MS. AVEY: So, so far, again, it’s really early in the process. We haven’t had any direct requests for genetic counseling, per sé. Some of the questions have come up -- interestingly, most of them have come along the lines of the genealogy side, where, you know, people have gotten their haplogroup assignment and are really surprised by the information and they find that very interesting and compelling. And they may have done another service where they got a little bit -- not quite the same information because our mito -- especially for the mitochondrial markers, we study more than just the ones in the hyper-variable regions. So sometimes people get a little bit different haplogroup assignment. So, so far, we have not gotten a lot of requests for genetic counseling, but that said, we’re wanting to work -- again, we look very broadly at this. We want to do education on a very broad level, and because we’re compiling and aggregating all this information together anyway, we might as well leverage it to produce tools and to have conversations with genetic counselors, physicians, whomever we can have discussions with in a big way. So we’ve had several webcasts with NSGC; anyone who’s interested can sign up and be part of the webcast. Now that we have a demo account, people can sign up without having to pay anything, and through the genomes of the Mendel family, we’ve had some interesting comments on that. Like, the Mendel family are part of your demo account when you set it up and one woman wrote in saying, “I’m related to the Mendel’s,” and she was very excited.

So we had to kind of explain that they’re there for demo purposes, and she’s probably not related to them, but --

MS. DYSON: Maybe she is, they’re real people.

MS. AVEY: Could be. So, you know, I think having that tool available now let’s people sign up, they don’t, you know, they can get access to our tools and see all of the information that we share with our customers, how it’s formatted, how you’re able to look across different generations, compare siblings; there are so many tools that we have for families that we’re finding people are very interested in. So it’s a good question, though, and we’re kind of anticipating how we can work with all of the different groups in the genetic counseling field.

MS. DYSON: And in a 23andMe survey it would be really nice to ask people, have you talked to a doctor beforehand? Now that you got results, will you talk to a doctor? And just do some genuine data collection on that point.

MS. AVEY: Yeah. And we’ve gotten quite a few researchers already who want to write some grants and come get funding to do some work with us, where we’re happy to develop those types of surveys. Exactly.

MR. EVANS: Yeah --

MS. DYSON: The purple shirt was first.

MR. EVANS: Right. So --

MS. DYSON: But you have to say who you are.

MR. EVANS: I’m -- yeah. My name is Jim Evans, I’m a medical geneticist and I’m a naysayer. [LAUGHTER]

I think that the --

MS. DYSON: Great. Nice and clear.

MR. EVANS: -- I think that the emphasis on mass marketing the appeal of individual genomics takes our eye off the real value of this type of endeavor. I think that GWA studies and understanding our SNPs and the association with disease has incredible potential for illuminating disease, for medicine from the public health perspective, for drug targets, et cetera. But I would submit that the slide we saw, for example, of Dr. Topol’s risk as defined by 23andMe, telling him that he has gone from a 42 percent to a 54 percent risk of a coronary artery -- of coronary artery disease, is essentially meaningless information.

And if everyone embraces that information with the same enthusiasm that I hear being advocated, and those individuals who embrace with the same enthusiasm a reduction in their risk from 54 to 42 percent, we’re going to have a lot of people using that as reasons to not exercise, et cetera.

And I think this kind of effort takes the eye off the ball of where the real benefit of genome-wide association studies, SNPs, et cetera, are. I think that before we start marketing it, perhaps we should actually find out -- we’ve put the cart before the horse. We should actually find out if people will respond in the ways that are so, kind of, magically suggested, that they’ll exercise more, that we hear anecdotes when they find out that they’re at increased risk.

MS. DYSON: But let me ask you about myself. Why don’t you think I should be able to do this without --

MR. EVANS: Oh, I think that’s fine. What I think you deserve, though, is I think you deserve a clear explanation and not, kind of, a marketing ploy that this is useful medical information because it really has not been shown to be useful medical information. It’s fine if you want to do it from a recreational standpoint; I’m all for that if you want to spend your money that way. I would argue that, again, finding out that you’ve gone from a 42 to a 54 percent risk of heart disease is essentially meaningless for you. For the population it’s important; for you, it’s meaningless.

MS. DYSON: Yeah. And I don’t really see anyone telling me that that eight point differential is significant.

MR. EVANS: Oh, I think that’s the entire -- I think that’s a huge amount of the appeal that these companies are banking on to get people to send them $1000. There is this real appeal to, this is going to be useful medical information, and I think that it’s rather disingenuous to suggest that, oh, we aren’t really giving you anything that’s medically useful. Of course you’re trying to maintain you’re giving people medically useful information. And I would just debate that there really is substantial meaningful information here medically.

MS. DYSON: Have you read the content of these sites carefully?

MR. EVANS: Oh, very carefully. Yes.

MS. DYSON: Okay. Well, we’ll just have to disagree, and I’ll ask the guy next to you to give his question.

MR. GUTTMACHER: Okay. (Inaudible) although I do agree with everything Jim just said. [LAUGHTER]

I think that you can, if you read the sites carefully -- this is not what I actually -- if you read --

UNKNOWN: Speaking off microphone.

MR. GUTTMACHER: Oh, excuse me. I’m Alan Guttmacher, Deputy Director of the National Human Genome Research Institute at the NIH. If you read the sites carefully, it’s extremely well worded. If you walk away from the sites with a general impression, it may not always match exactly what the wording is. But what I’ve actually asked for the mic for is just to comment on something that Linda said about Dr. Risch’s access to dbGaP. Of course, that is a limited access database. He would have to show his -- what his (inaudible) research use of it was before he was afforded on that information, and he would have a users agreement before he did that, which amongst other requirements, would require that he said he was not going to use it try to identify individuals. If he did that and the federal government were of his doing that, then we would take a number of steps to follow up on his misuse of such information. Just to give some -- does that mean it can't be done? Of course not. But it would violate research ethics, et cetera, just as other violations of research ethics, it would be fought up to -- with quite fully.

MS. AVEY: And I’m just curious if the -- when the people signed up to be part of the studies, if they knew that they’re information would be accessible?

MR. GUTTMACHER: Well, if the informed consent process for the studies was not appropriate for its use in this way, then in fact it is not placed on dbGaP. That’s something we look -- we look at all of the studies which apply to be listed on dbGaP, and we’ve rejected a number because the consent was not appropriate.

MS. AVEY: That’s great.

MS. DYSON: The waving hand right in the middle of the room there. Thank you. No, no -- actually, yeah. Right there.

DR. KHOURY: My name is Muin Khoury, I’m the Director of the National Office of Public Health Genomics at CDC, and I’m one of the naysayers according Dr. Topol’s slides.

Actually, the word naysayer is more like what Rebecca was talking about, this sort of, being careful, proceeding with caution type person. And want to echo a little bit what Jim Evans said. And I don’t have any problem with people spending $1000 or $2500, I mean, we buy a lot of useless equipment all the time anyway. But in this case, genomics can really make, sort of, the next 10 to 20 years very exciting if we do it the right way.

There is a lot of discoveries being happening, and the value of the information that’s currently out there is not there yet. And I have to echo Jim and Alan Guttmacher and others, and the reason why I say that is because the -- from three fronts, just want to summarize briefly what I said in that New England Journal of Medicine paper. We don’t know if the information we get from one company is the same we get from another company. We don’t have a good handle on the oversight and, sort of, the analytic performance of these essays. Because of the changing in the literature, if you tell me today my risk of heart disease goes from 42 percent to 51 percent, tomorrow you might say the reverse based on the next paper that’s published.

More importantly, we have really no clue as to whether this information provides additional value to your existing risk factors for that disease. As a matter of fact, from all we know, I mean, I’ve seen the Type 2 diabetes literature, the heart disease literature, prostate cancer, and all these wonderful papers that Dr. Topol was mentioning earlier -- if you do a good analysis of the area under the curve, there is no more prediction to be had for all of these diseases on top of what you already know, which is your family history, your age, sometimes race and ethnicity, sometimes traditional risk factors. I mean, we know that from the Framingham risk factor profiled for cardiovascular disease.

I have no problem with people spending money, but people have to exercise, eat well, and do the right things from a public health perspective -- work, and reduce the burden of disease at the population level. And whether or not your additional 1½ or 2 percent is going to make or break, you know, that, has to be researched, and I sort of applaud the effort to do more research to figure out the impact of this information. But whether consumers should pay for that while research is being done, I have a problem with that because research by definition means -- I’ve been cut off. [LAUGHTER]

Thank you.

MR. HOLT: We’re out of time, but I’ll just say quickly, I mean, it seems to me that you’re kind of in a sensible place, which is that, yeah, it’s a question of who pays for this, right? Because there’s a lot of stuff that comes out of the health care system in general. When I say stuff, I mean both diagnostic tests, procedures, and who knows what, which is a very limited or debatable value. And, you know, we know this from Joe Winberg’s (phonetic) work at Dharma (phonetic) for over the last 40 years. So the question is, you know, which side of the line is this NIH funded research studies -- is this like the rest of the world where we have private enterprise, you know, using consumers or not using consumers, funding research (inaudible) whoever bought, you know, many information technology products. If you bought a Windows product within the last 20 years you probably actually, you know, are a consumer paying for research. You know, it seems to me that -- it’s a question of who funds this and at what point does this become part of the general medical mainstream? That’s the question. This is going to really explode when Medicare and insurance companies decide that, you know, paying for one of these $2000 genetic tests is going to be the way to go and it’s some natural thing that gets done as part of the general medical procedure process. And that happens with many different technologies and many different types of activity in health care when their clear value has been assessed. So it seems to me that’s the dividing line of the question, not whether or not, you know, it should be paid for by consumers or private industry or NIH. It’s question is when does it become part of the general mainstream that, you know, the whatever society it is recommends that 50 or 30 or 20 or 0 years of age you get this -- you get your SNPs done. And it seems to me, that’s the real dividing line questions because that’s when we’re going to start spending real money and making our friends here very rich or not.

MS. DYSON: You must have a response to this, Linda.

MS. AVEY: Yeah. Just really quickly. I think Eric wants to say something too. But I, you know, I just -- I feel like we always do these research studies, and I’ve been looking at these and working with people for over 20 years who do this kind of research, and I think that there’s time and it’s an opportunity now to do it a little differently and to try something new because we’ve been doing the same thing for a long time. And this is why whenever somebody tries something new, that a lot of naysayers pop up and say, you know, let’s question this.

Which we’re very open to the questions and we welcome the debate because we want to do this well, we want to do it right, we want this to be meaningful for people. We’re not just doing this to make a buck; believe me, that’s not our goal whatsoever. We’re here to make a difference.

Individuals seem to want to participate. When you talk to people who have been sick, who have had cancer, who feel like they can now participate in something that might be meaningful, that they could be -- you know, that they could have an active role. And the traditional research paradigm, unlike things like the Framingham study which are more unusual and atypical, we don’t have a real way of tracking people prospectively. And being able to develop a long-term relationship with them and find out, when did you get the disease, when did you take the drugs, track all that information in a very concise and centralized, standardized way. Most epidemiologists would love that, so we’re -- we just want to create a mechanism to enable that, and then we’ll work with the researchers and the experts in the field and say, “Here we are, we’ve got x number of people in our database who are willing to share information; what would you like to ask them?”

So it’s a new twist, and we knew we were going to get arrows in the back. We’re still going to get arrows in the back, but we’re going to do it.

MS. DYSON: Okay. As I said, benefactor today, beneficiary tomorrow. I’ve been asked to read as the final question a question from Kenneth Offit of the Memorial Sloan-Kettering Cancer Center; he’s Chief of the Clinical Genetic Service. And if you want to put this into the record, you might. But let me just -- it’s a bit too long to read, I’m just going to end with the conclusion which is really the conclusion question for the panel.

Is this -- and trying -- this is your chance to summarize, say something witty, you know, whatever.

“I would ask the panel” he says, “is this the time for,” and I guess this “either caution, consumer and provider education, and not-for-profit marketing of research data?” I’m sorry.

UNKNOWN: (Inaudible).

MS. DYSON: I’m just trying to read this thing. I think, basically, it’s the -- I can't really see whether this means not-for-profit marketing or not-for-profit marketing of research --

MR. HOLT: (Inaudible) -- is it a time (inaudible) --

UNKNOWN: (Inaudible).

MR. HOLT: Not for profit marketing. Right.

MS. DYSON. Yeah. Whatever. You can answer it whichever way you want, so, Rebecca.

MS. FISHER: Don’t look at me. (Inaudible) give it to Matt --

MS. DYSON: Should --

MS. FISHER: I guess I --

MS. DYSON: I think there’s a question whether it’s proper to bring profits into it. And --

MR. HOLT: I mean, great, good luck, welcome to America. I mean, what part of the health care system does not have for-profit marketing in it? And that includes, by the way, almost everyone in the non-profit sector of the health care business. I mean, you know, great idea -- Memorial Sloan-Kettering. You’ve seen that building, I mean, come on. [LAUGHTER]

That’s not how this country works. I mean, you know, fantastic in other places, but, you know, and we need to have naysayers, we need to have debate, we need to have sort of people shining bright lights at this -- as they should the rest of the health care system as to exactly what’s going on and where the money flows, and, you know, whether it’s doing good or not. Exactly. But to say that people shouldn’t do for-profit businesses in this is ridiculous given everything else that happens in health care and the rest of society.

MS. DYSON: Thank you. That was clear.

Rebecca, anything else?

MS. FISHER: I’m still not sure that I understand the question. But, in general, I agree with Matt. I think, you know, free enterprise is -- has made us a really great country and we should continue with that paradigm. We just need to do it carefully.

MS. DYSON: Thank you. Linda?

MS. AVEY: Yeah, I’ll voice the same thing. That we, you know, we really think at the end of the day what will make 23andMe a successful company is having a really great user interface where we make this information really clear for people. We hope the costs continue to drop, which we think they will. It’s the -- historically, if you look at the cost of genotyping over the last ten years, which was shown, it’s dropping tremendously. And so we really think the value of this is having a lot of people engaged and willing to share information. And as long as they’re willing to do that, we think there is a way to do this. And if you try to do this in a not-for- profit way, which we talked about when we first started the company, can we either split out a not-for-profit side of 23andMe or do something a little differently, and the problem is that when you’re running a not-for-profit, it’s really hard to hire really good engineers, it’s really hard to build a really strong team to build what you need to get people to want to participate in the first place.

So you’re kind of between a rock and a hard place. So we felt like we can be a company that does good and does well, and that’s really our mission. And, you know, we’re going to be voicing that more and more and wanting to do our own studies that hopefully we will be able to do some funding and as -- hopefully we’re successful. So we’re sensitive to that problem, but we’re -- you know, we think it’s free enterprise; it’s America.

MS. DYSON: Let me thank the panel for being a great panel. I think we need to move forward with free enterprise, free consumers -- all in the context of having more panels like this so that people understand what they’re doing and what the implications are. Thank you very much. And thank the audience. [APPLAUSE]

DR. COWAN: Thanks to the panel. We’ll have a break now. we have a 15 minute break; that’ll bring us back at five till 3:00, please. If you can do that; I know 15 minutes is short. [BREAK]

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