34 min read

Episode 2 Transcript: Michelle Meyer

Originally aired on The Genome Podcast 11.28.2017

By Misha Angrist

Note: Genome podcast transcripts are provided for your reading pleasure. The transcripts may contain some errors or lack certain emphases found in the original audio.

 

Misha Angrist: Hello, and welcome to the Genome podcast. I’m Misha Angrist from the Initiative for Science and Society at Duke University, and the editor of Genome magazine. My guest, Michelle Meyer, is an Assistant Professor and Associate Director of Research Ethics at Geisinger Center for Translational Bioethics and Healthcare Policy in Danville, PA.

Misha Angrist: Beyond that, she’s one of the smartest people I’ve ever met. We spoke a few months ago and talked about, among other things, having a doctorate in religious studies while being a non-believer, being a professional misfit, the weirdness of the institutional review board system, how we manage biospecimens in data, whether we should read terms of service agreements, and what it’s like to live with an uncertain version of the gene responsible for Huntington’s disease. Here it is, my conversation with Michelle Meyer.

Misha Angrist: Did you have expectations for the trajectory of your career?

Michelle Meyer: My expectation actually was that I would write.

Misha Angrist: That you would write what?

Michelle Meyer: Well, by college I had thought creative nonfiction. I didn’t feel like I was really good at plot, and applied to some programs, got into Iowa, got into Columbia, got into some good programs. Simultaneously though, applied to PhD programs in applied ethics, more or less. Really I think what dictated the choice was just pure fear, silliness on my part, but fear.

Michelle Meyer: I thought, “I’m going to do creative nonfiction, personal essay stuff, and what am I going to write about? I haven’t done anything.” When I accepted and I ended up going to UVA, because they had invested a lot in practical ethics and applied ethics, and especially biomedical ethics. There was Harvard and Chicago and Yale, which were all div schools, divinity schools, and I had come up mostly through religious studies with a minor in moral philosophy, so that positioned me, which was not something I had planned for, positioned me really for religious studies PhDs more than philosophy PhDs.

Michelle Meyer: The top programs were all schools of divinity. At one point or another, each of those schools, very, very fine schools, had had some offerings in applied ethics, but at that time, not so much. Jim Childress was at UVA and John Arras was at UVA, and John Fletcher. Two of the three of them have now passed on, unfortunately, but they were all at UVA. So, when I went there, I remember telling Jim Childress, sitting in his office and saying, “You know, here’s my plan. I’m going to do my coursework. I’m going to take my comprehensive exams based on the coursework. Then I’m going to take a leave of absence and I’m going to go do my MFA in creative nonfiction. Then I’m going to come back and write a dissertation.”

Michelle Meyer: Bless his heart, Jim Childress just smiled and nodded. I mean, I suppose that’s a feasible option, but once you’re that far down the rabbit hole, I mean, extracting yourself and then, “Oh, I’m going to go do a creative nonfiction masters MFA, and then come back.” No. That was not something that happened or that I even, I think pretty quickly, I abandoned all pretense of that being a thing. Then of course, law school instead became a different strand.

Misha Angrist: Before we talk about law school, did you grow up in a religious household?

Michelle Meyer: No. My father is a lapsed Catholic. My mother’s a lapsed Protestant of something variety. I was in theory raised to be, to question, and to just whatever religious tradition, blah, blah, blah. In practice, they raised me to be an atheist. I can’t say that it was … That’s how I identify, as full on, the A word. Not even agnostic. Atheist.

Misha Angrist: But how many other atheists were in your PhD program? I don’t need to know the exact number.

Michelle Meyer: Yeah. Probably not a lot. I mean, the irony, one of the reasons I was skittish about going to a divinity school for precisely that reason, and of course, one of the ironies is the old joke about Harvard divinity school anyways. Where do you go in Harvard to find all the atheists? The div school. I think there are different cultures. I was really not very well informed about a lot of things. I don’t come from an academic family at all. Nobody else. There are a few graduate degrees of this and that, but nobody else in my family is an academic.

Michelle Meyer: So, the whole thing was just completely foreign to me, and I think I was young, I went to a PhD program straight from undergrad. I should have done more informational interviews, tried to figure out some of the stuff, but it was what it is.

Misha Angrist: So, you would do it differently?

Michelle Meyer: Well, I would think long and hard about religious studies versus philosophy PhD, for one. Mostly that’s less because of the training I actually got, which was quite philosophical. I trained with Ron Green as an undergrad at Dartmouth. I trained with Jim Childress in my PhD studies. Jim comes from a Society of Friends, a.k.a Quaker background.

Misha Angrist: Fight Quakers Fight?

Michelle Meyer: Yeah. I have no earthly idea what Ron’s theological views are. I assume he reads as a secular Jew. I really don’t know, and that’s kind of the point, is that in both cases, their work was secular humanistic. It was philosophical. It was not coming from a particular faith tradition of any sort. So, my actual training was great, and in many ways, better for me and I would say in general than the average American analytical philosophy department, where it would have been difficult to do continental stuff. It would have been different to do applied ethics.

Michelle Meyer: I mean, those are all frowned upon and those were some of my interests. But it did or at least I felt that coming out of a PhD program with a religious studies PhD created a professional identity problem for me. In as much as if you want a secular, philosophy position on the ethics of X, you’re going to go to a philosopher. If you want to know, well, what does a reformed Jew think of X? Or, what does a Catholic, Roman Catholic, think of X? Then, you go to a religious studies person.

Michelle Meyer: I wasn’t going to be able to fulfill that niche, so it made me worry that the people I trained with just happened, through happenstance, to have taken that approach and they had come up through religious studies departments of time, when bioethics was up for grabs. I mean, they both came from the ’60s. It was just being invented, but by the time I was going to be on the market, I worried that the jobs would be particular to a particular faith tradition, and I didn’t want to be writing from any particular faith tradition, obviously.

Misha Angrist: That was enough to drive you to law school?

Michelle Meyer: Not exactly. The law was always something that was of interest to me. My grandfather had been a practicing attorney, was always something that I thought I might well be pretty good at, and was of interest to me. So, when I went, I thought, “I need a secular credential.” For about two seconds thought about getting a second PhD in philosophy, and talked to John Arras, the now late, always great John Arras, who said, “Well, you’re going to be a misfit there, too.”

Michelle Meyer: ‘Cause I said, “I really feel like a misfit in religious studies.” He’s like, “Yeah, you’d be a misfit here, too. U.S. departments of philosophy, very analytic. You did your undergraduate dissertation on Sartre, you’re continental. You’re in applied ethics.” It was really, you just have two PhDs worth of being a misfit, and the law degree was also more practical.

Michelle Meyer: I also wasn’t that excited about seven more years or whatever, of epistemology and metaphysics, and ontology, and this and that and the other thing. It was a combination of a course correction or a complement to the PhD. I thought something even more practical with a secular credential, that I could speak from, and plan B was if for whatever reason academia doesn’t work out, or I decide it’s not for me or whatever, that was probably, other than the writing thing, that was probably the next best alternative for a career for me, was actually practicing law.

Misha Angrist: What kind of law?

Michelle Meyer: I’m not sure what I would have said had you asked me before I started law school. Probably something silly. Once I had some experience in law school, and clerking, et cetera, et cetera, I think I would have very much liked appellate law. These are deep dives, close readings. It’s hermeneutics, it’s a lot of what you’re trained to do in a humanities PhD program anyway. I would have had to work my way up, where you have to stand before a panel of judges and you get three words out, and they start interrupting you.

Michelle Meyer: That would not have been my first choice of a good time, but writing the briefs, yeah. That I would have enjoyed quite a bit I think.

Misha Angrist: I’m wondering how you found your tribe, and your subject matter.

Michelle Meyer: I do not feel that I found my tribe at all. I just embraced being a misfit. I’ve just resigned to that at this point. Yeah, my subject matter, which is primarily research ethics, research regulation at this point, with a heavy dose of genomics and some reproduction in there, that was just kind of an accident.

Michelle Meyer: I think it was not something that I was especially focused on in my PhD program. Of course, I was introduced to it, I taught the basics of it. Wasn’t something that was especially exciting to me, until after I went to law school and then was reintroduced to it. With the benefit of legal training, I thought, “This is a really bizarre system.” IRBs are mini regulators and every reason we have for developing and sustaining the administrative state is just completely lacking here.

Michelle Meyer: There’s no accountability, there’s no transparency, there’s basically no expertise. I mean, these are all reasons why we delegate some policy making to administrative executive agencies, because they have these attributes. IRBs lack all of them. I thought, “What is going on here?” And that was just one of many reactions that I had. I just thought, “Boy, there’s just enormous research agenda.” I went from there, through a couple of postdocs in my early faculty career.

Michelle Meyer: So, that’s, at the moment, where I’ve focused. As far as tribes go, I mean, there research ethics is a subfield, but as you know, there are I would say different approaches to that subject. In a lot of ways, I think I identify more with investigators, with scientists, than with research ethicists, or IRBs, necessarily.

Michelle Meyer: The more I’ve worked with IRBs, and now here at Geisinger had a leadership role, the more sympathetic I am to the position that one is in when they serve in that capacity. I’ve served on an IRB before, before being at Geisinger as well. Yeah, I view myself almost as a handmaiden of the scientific community, and as a translator between the research ethics IRB world and the scientific world, and trying to … They both get it wrong sometimes. It’s not all IRBs, right?

Michelle Meyer: I mean, there are plenty of scientists who are just off to the races and not really thinking carefully about the effects of what they are doing or plan to do, so I don’t want to make it seem too one sided, but yeah. I would describe myself as a fairly unorthodox research ethicist. I’m not unique in that respect. There are other fellow travelers for sure.

Misha Angrist: What position or positions do you think you hold that are most abhorrent to the establishment?

Michelle Meyer: Yeah. So I think, I mean, I guess the whole Henrietta Lacks biospecimen thing, and the whole revision of the common rule, that whole debate we’ve had for the last six years or so is a decent example and it’s also an example that I’m hardly the only person working in this area from a law and bioethics perspective who takes this view. But I think certainly it could be argued, or some might be surprised that I take this view, and the view is that when data or tissue is collected for other purposes. I mean, the view really just matches the existing law, right?

Michelle Meyer: When it’s taken for another purpose, so it’s taken for clinical purposes, and you’ve got leftover tissue. It’s de-identified, per HIPPA, and non-identifiable per the common rule. The risks are not zero. The privacy risks are not zero, but they’re relatively small, and lots of things we do in life that we don’t really have a choice over involve non-zero risks. Vaccination is a decent example. It does not cause autism, but it’s not zero risk, right?

Michelle Meyer: There are some bad effects for some people on occasion of being vaccinated, and yet, there is a broad policy choice that we’re all in this together. There’s solidarity, and we compensate people, of course, for those injuries, but the benefit for everybody massively outweighs the small risks. I look at research with non-identifiable biospecimens and data as very similar. So, I’m not outraged that all of us have had our data and our biospecimens used without our identities attached to them to further research.

Michelle Meyer: I’m not convinced. I realize that some people have objections to particular research projects. We also have objections to the way our tax money is spent.

Misha Angrist: We certainly do.

Michelle Meyer: And yet, in a democracy, or in a world where you have to have these aggregate decisions made, we just can’t vote on every single thing. We have a representative democracy, so that’s the overall approach. People who think, “No, I should be able to say yes or no to every study that my specimens, even if it’s not identified with me in anyway, just pure autonomy, I should be able to say yes or no.” I’m skeptical about that, I’m not convinced about that, much less that they should paid necessarily.

Misha Angrist: I know you’re interested in research conducted by social media companies or maybe it’s not research, maybe it’s just quality improvement. Terms of service for those sorts of companies, terms of service for direct to consumer genetic companies like 23andMe, and informed consent for traditional academic research studies. From my cynical point of view, what unites all of those things is people don’t read any of it. They just click-through, or they initial the page or check the box. Should they read it? Would it change their mind? Would they understand it?

Michelle Meyer: I mean, the terms of service, I personally would say no. You shouldn’t read it. It’s an entirely rational decision to save an hour of your life reading 10 point font, ridiculous boilerplate stuff. I think a lot of it is impenetrable to the average person, and even if it’s not impenetrable in a literacy sense, it’s vague enough that how would you know what this really means?

Michelle Meyer: I don’t think that that’s … Putting the word research in a 20,000 word terms of service, or data use agreement, everything else, that’s not ethically meaningful consent.

Misha Angrist: Let me ask the question another way, which is, I mean, you’re someone who has read the terms of service and who can read the terms of service and understand exactly the Faustian bargain you’re making, or otherwise. How often have you done that and said, “Oh, my God, this is terrible” or, “At the very least this is a deal breaker and I’m not going to sign up?”

Michelle Meyer: Almost never. So first of all, I mean, I don’t go around reading terms of service like normal people. When I download, when I upgrade iOS, I mean, “Click to accept, click to accept. Continue, next.” I’m not reading that stuff. I’m not that much of a misfit or that much of a freak. Yeah, occasionally I have occasioned to read such documents for my work. It personally, I can’t recall a circumstance in which I would have ever said, “Oh no. I’m not signing up for this,” but I have particular privacy preferences, which are perhaps more forgiving than other people’s.

Michelle Meyer: I mean, in theory, could you smuggle in some term into a terms of service that was just unconscionable? I mean, the classic example that everyone uses in their slide, right? Is the study of Londoners where they said, “Would you like free wifi? Click here to say yes.” Somewhere smuggled in the terms of service was you have to give away your first born child, or name your first born child Byron or something, whatever. No court would enforce that, so I mean, on the one hand, no one reads them. No one arguably really should, because they’re pretty standard.

Michelle Meyer: It’s not as if you could bargain your way out of them. Your alternative is to not take the service, and depending on what service it is. So that’s the other thing. I mean, that’s I think the difference between that, like an Apple software agreement versus a traditional academic research invitation. In most cases, unless it’s like a cancer trial where the trial is the treatment, research is totally optional for you, right?

Michelle Meyer: Your alternative is not to do it, it’s to go about your life. So yeah, you should read that. For terms of service, though, I mean, realistically, there are certain services, everyone uses them, you want to use them. People say that they have certain privacy preferences. Even when you tell them, “Okay, this is what’s happening,” they may not be happy about it, but they still accept it, because they want the underlying service, right?

Michelle Meyer: Anything truly unconscionable would not be held up, I think, by a court of law, just because it was in the terms of service. I think it’s a pretty rational decision to avoid that. Now, I think companies that want to do a lot of research and want to avoid the kind of brouhaha that Facebook experienced and other companies have experienced should find a better away of providing notice to their users or their customers that this is the type of activity they do.

Misha Angrist: So, Facebook did this study of emotional contagion, where they altered their customers’ news feeds. They did not disclose this ahead of time, and there was this paper published in PNAS and then there was, I guess, a shitstorm that erupted after the fact. You wrote extensively about this, and what’s your bottom line? What should have happened?

Michelle Meyer: Well, I think the first thing is to explain how I see this activity, what they did. There were two academic hypotheses about the effects of newsfeed, which is a 2006 era innovation, that just kind of is a fire hose of your friends’ updates. I think the closest thing prior to 2006, the closest thing to such a fire hose was like the annual holiday letter. “Oh, little Chancey has won first prize in her pageant.” Whatever.

Michelle Meyer: If you wanted to feel bad about your life, you would have to wait until December. Well, this was an every day type thing, and so the primary academic hypothesis was just that. It was very unflattering, but the idea is we feel worse about our own lives when we read what our admittedly posturing on Facebook. Everyone’s marriage is perfect on Facebook, everyone’s career is perfect, right? Everyone’s vacation…

Misha Angrist: So we would feel better if cousin Joey was a meth head?

Michelle Meyer: Basically, yeah. Like I said, it’s not very flattering, but this was a hypothesis called social comparison, right? Both of these are social psychology hypotheses. That had gotten the most attention in the media. Alone together, blah, blah, blah. There were claims, empirical claims based on small observational studies mostly, that Facebook was making people sad or resentful, jealous of other people, depressed, et cetera, et cetera.

Michelle Meyer: Then, on the other hand was this almost polar opposite hypothesis, also from social psychology, called mood contagion, which is our moods are infectious, this is something we knew to be true in real life, where you can facial feedback hypothesis. Unclear, less clear whether it translated to text, but there was this hypothesis, and if that was true … If the social comparison theory is true, then what’s risky for mental health of Facebook users is being exposed to all the successful people on your feed who are telling you how great their lives are. That’s what’s risky for your mental health.

Michelle Meyer: If on the other hand mood contagion is true, then actually those posts are protective of mental health, right? Because your happiness should spread like a virus to me, and make me happier. What’s troubling then, in fact, would be the negative posts, the meth head posts, right? Where that sort of would bum us all out in a viral way.

Michelle Meyer: Ask yourself, so it’s this innovation, and Mark Zuckerberg doesn’t know exactly what he’s doing. I mean, look, “Here’s an idea that seems cool. Let’s have this thing called newsfeed. Great.” He doesn’t know what the effects of newsfeed are going to be. Nor do the Facebook engineers. No one knows what the effects are, and we can’t regulate everything like a drug. We can’t say, “Well, if you’re going to innovate, first you’ve got to go through a phase one, two, three trial. The FDA has to weigh in.” You can’t live that way. That’s not realistic.

Michelle Meyer: But at some point midstream in your product or your service, you start getting credible, albeit not dispositive evidence from academics, saying your service is posing mental health risks in one or both of two different ways. Positive versus negative posts, right? What is a responsible innovator supposed to do? From my perspective, a responsible innovator uses its position, which it uniquely has, because it controls the algorithm, so it’s able to do a robust study of this, with an RTC. You figure it out, right?

Michelle Meyer:  You figure out what’s going on here, and whether your service is actually causing people harm or not. That’s more responsible to me than not studying it, which was a completely viable option for Facebook. Sure, maybe some people were quitting because of all of the media hype about, “Oh, Facebook makes you sad” but obviously not that many, as they have billions of users. They were doing fine. They didn’t need to study this.

Michelle Meyer: So, compared to the alternative, which it’s always important to do in the real world, I think studying it was a good thing to do. Well, now, what about consent? Well, this is a behavioral study. If you told people, “Here’s what we’re looking at and why,” it would have completely biased the results. No respectable social scientist would have taken it seriously.

Michelle Meyer: So, as I said, I mean, it would be nice if the Facebooks, the Googles of the world would say, upfront, in a more transparent way than the terms of service, “Look, we are doing things all the time to try to figure out how to make a better experience for you. To be clear, some of those things benefit the user and the company. Some benefit just the company, and aren’t really neither here nor there for the users. Some benefit the company at the expense of the user.”

Michelle Meyer: There’s a whole range of ways in which you can use science, and data analysis, and collection. So I’m not naively suggesting that every time an A/B test is conducted it’s to benefit users, or customers. I do think in this case, that it certainly had that potential. It falls squarely within quality improvement. The common rule didn’t apply to it, but if it had, it easily could have been characterized as peer quality improvement that would have been not only exempt … Not exempt, but just it would not have fallen within the common rule at all.

Michelle Meyer: The science communication could have used some work. I mean, when you publish something, mass evidence of mass contagion, mood contagion, that’s a little scary. Use the word manipulation, the average person, because it had to do with mood, and then you had the word manipulation, which is a term of art and science, but you combine those two words together…

Misha Angrist: Sure.

Michelle Meyer: … people lose their minds, and that’s what happened.

Misha Angrist: Yeah, kind of a tone deaf.

Michelle Meyer: Yeah. Although, I mean, they had published lots of studies before. Voting behavior, no one had really blinked, so it’s a little bit of a mystery why this one in particular. I think they weren’t prepared for it, because nobody had done it. That’s the other thing is, I mean, you do have to look at risk, right?

Michelle Meyer: So, from my perspective, these were very minor manipulations of the content, of the emotional valence of one’s newsfeed. It’s important to understand that since day one of 2006, when newsfeed was rolled out, it has been algorithmically curated. When people say, “Oh, they manipulated your newsfeed.” Yes, they did every single day. There is no such thing as an unmanipulated newsfeed. There never has been. There never will be.

Misha Angrist: We don’t…

Michelle Meyer: We don’t want it. At this point, there’s some 100,000 criteria for picking the roughly 300 posts out of roughly 1500 that each of us are eligible to see at any given time, and prioritizing those in a feed. It’s proprietary so we don’t know exactly, but you can imagine that emotional valence probably plays a factor, if for no other reason than through engagement metrics. Until recently, until they introduced the crying emoticons and the, “I’m angry” emoticons and all that.

Michelle Meyer: All you could do was like something, and to the extent that you’re much more likely to see something if people have liked it, and to the extent that people generally don’t like, “I got fired today.” They generally like only positive news. It had a built in tendency to prioritize positive news. That’s where this social contagion versus … Social comparison versus mood contagion became important to understand the effects of a newsfeed that for most of us, is fairly heavily dominated by “positive news.”

Misha Angrist: Puppies.

Michelle Meyer: Yeah. But the important point I think is that there are individually and collectively good days and bad days on a medium like Facebook or Twitter. There are some metrics that actually track, especially for Twitter, but also for Facebook, for the accounts that are public, and they’ll look at things like the Boston Bombing was obviously a very bad day on social media platforms. Lots of, if you just the software to code language, obviously lots of negative language being used on social media on that day and the immediately following days.

Michelle Meyer: So, the very mild manipulations of positive and negative words in people’s feeds were almost certainly within the standard of care that every Facebook user is exposed to. Say, within a month, or couple of months. The difference here was that it was cleaned up in a way to allow people to draw some causal inferences. But I don’t think that there’s good reason to think that people were exposed to greater risks in that one week experiment in the first week of January, 2012, than they are in any other week, as Facebook users.

Michelle Meyer: So, when people start saying, “Facebook manipulated people just for the fun of it, just to see what would happen, and they didn’t care whether people would leap off bridges to their death because of it” is just hysterical and wrong on so many different levels. That’s how I got into, it started my writing on it. Just started. People were saying, “Oh, this doesn’t have IRB review. Therefore, why not?”

Michelle Meyer: I had to explain what the deal is with IRB review, and when it applied and when it doesn’t, and then people said, “Well, Cornell wasn’t involved so there should have been IRB.” “No, Cornell wasn’t engaged in research. Here’s how that works.” Then it was, “Well, there wasn’t any informed consent. Human subjects research is always unethical if there’s no informed consent.” “Well, no, actually, that’s not the case. Most people don’t think that’s the case. It’s not the case under federal regulatory law. If the common rule had applied, and here are the circumstances under which, and here’s why. It could have been human subjects research that had a waiver of informed consent, or it could have just been quality improvement and not been human subjects research at all.”

Michelle Meyer: Then, I got more deeply into the responsible innovation piece of it, and what actually an ethical Mark Zuckerberg should do. I actually think an ethical Mark Zuckerberg should have done something a lot closer to what was actually done than to what the critics say which was this should never have been run. We should have just carried on. That’s another good example of, I actually think if you understand the study and the context, I actually don’t think it’s that unorthodox at all. But it certainly strikes. I’m sure it has striked people as being unorthodox coming from a research ethicist.

Misha Angrist: Do you have a family history of Huntington’s disease?

Michelle Meyer: Yeah. I have an extended family member who died of Huntington’s and other members of that branch who are affected and living with it. I’m third generation, that we know of, who has been tested, and my direct line. So, the grandparent tier was a 36 and he died, and we shipped his brain off to Maclean’s and he had also been diagnosed with Alzheimer’s. They said it was just a terribly Alzheimer’s riddled brain. It was just one of the worst they’d ever seen. They saw no, on postmortem, no signs of Huntington’s at all.

Misha Angrist: He was how old?

Michelle Meyer: Oh boy. I don’t know. I mean, 80s.

Misha Angrist: Huntington’s happens when you have these three base pair repeats in the Huntington generate, and they exceed a certain length, and that causes the pathology, and there’s some intermediate number of repeats that are less likely to result in full blown Huntington’s, but that are at some risk of something. But you have 37?

Michelle Meyer: Seven. Yeah. So, my parent has 37, my grandparent had 36. It anticipates in both ova and sperm, but is much more likely to do so in sperm. It’s I guess more unstable, so it was “lucky.” Those are air quotes that I’m making, lucky that the affected parent, I’m not quite sure what language to use.

Misha Angrist: Right. Carrier.

Michelle Meyer: Yeah, the carrier, right. The parent is, I don’t know, late 60s. Certainly unaffected in any clinical sense, as am I. Now of course, as you mentioned, there are these in between CAG repeats, I think we are learning more and more about subclinical sequela of the proteins misfolding or whatever. I think subclinically, emotionally and cognitively, there are some things yet to be seen.

Michelle Meyer: So, hey, maybe I’d already be a full professor if I didn’t have 37. Can I blame it on that? Who knows, right? I’m an academic so I’m a little weird, and how do you tease apart whether that’s just me? At some point, I guess it doesn’t really matter.

Misha Angrist: I guess I’m wondering how, if at all, it informs your work? So, you and I serve on the Board of Directors of the Open Humans Foundation. You’re a participant in the Personal Genome Project in which people make their genomic data public, without much of an effort at de-identification. So, given your 37 CAG status, has that given you pause about being involved with this kind of research or getting sequenced?

Michelle Meyer: It didn’t give me pause about getting sequenced at all, because I figure, that’s surely the big, dark secret in my genome. Well, first of all, current sequencing technology generally doesn’t pick up CAG repeats, and complete genomics that did mine through PGP, it did not. Nor did 23andMe or any of that, so there’s that, but even if it had, I figure, boy, I already have that. Like, could it really be … I mean, I could have had two copies of ApoE4 thrown in there for fun.

Michelle Meyer: But I think it probably made me less concerned than the average person, just in the sense of, “Well, I’ve dealt with what is a” … I don’t quite know how to characterize it. I mean, on the one hand, it obviously can be extremely serious, fatal, and really terrible. This American Life memorably described Huntington’s as like MS and Parkinson’s and Alzheimer’s all rolled up into one. I was like, “Okay, that’s great.”

Michelle Meyer: If I can deal with the uncertainty of that, then like whether my pee smells like asparagus, or whether I have a 1% increased lifetime risk of some sort of cancer is probably trivial by comparison. As far as sharing the data, though, my concern has been, and obviously one that per my talking about it right at this very second, I’m working my way through, but my concern has been that people are not especially literate about this kind of stuff.

Michelle Meyer: In particular, Huntington’s, Huntington’s is always identified as the classic case of autosomal dominant, horrible, fatal disease, and you have a 50% percent chance of getting it, and if you have an affected parent, you have a 50% chance of getting it, and that’s it, without any nuance. That was what was taught to me as a bioethics student, as an undergrad, so when my parents first approached me and said, “Well, one parent has a 37 and there’s Huntington’s, and now” … I thought, “Hold the phone here. There’s been some sort of confusion” because half of our family would be dead of this. I knew that not to be the case.

Michelle Meyer: That was an education for me, and I continue to meet people who are very sophisticated, intelligent people who are not aware, no particular reason why they necessarily should be, about the reduced penetrant alleles, and so I certainly did not, as someone relatively junior in my career, did not want anyone to say, “Oh, let’s not take a chance on her because she’ll” … And that’s combined with some media focus on some people with Huntington’s who have say, I mentioned “This American Life,” they ran this story that it was this big mystery about this doctor who had murdered his father.

Michelle Meyer: It was a mystery. He seemed so normal, and what could have caused him to snap? And at the very end it was, “Ah-huh, it’s because he had Huntington’s.” I thought. “Oh, boy.” You don’t know that Huntington’s had an influence. I’m perfectly ready to believe that it did. I’m not denying that it can manifest itself that way, but I don’t think that there’s evidence that most people with Huntington’s become murders.

Michelle Meyer: So, all of this kind of information or misinformation gives me pause in who knows this. At this point, people talk more about the risks of information getting out than they do of the cost or the burdens of keeping quiet about things. I’m kind of tired, you know? It’s weird to sit in a seminar and have people talk about Huntington’s. It just happens constantly in the field that I’m in. It’s around, and I’m just a very open person by nature. I just am, for better or worse.

Misha Angrist: And your family, there was never a, “Okay, we have to circle the wagons and take an oath of secrecy?”

Michelle Meyer: No. There were, the grandparent, by the time this happened, he was hospitalized. But he was towards the end of his life with Alzheimer’s. It wasn’t like he faced any sort of career discrimination. That was probably mostly true of my parent as well, so it was really, I was the one that was most vulnerable in terms of certainly career relationship prospects. I wasn’t married at the time, that kind of thing. But no, there was never any circling the wagons, and my line of the family did reach out to the other line and share, the other branches, and say, “This is what’s going on.”

Michelle Meyer: People reacted very differently, and many of them react in the way that seems typical in the literature, of a lot of Huntington’s families, where it’s, “Just don’t want to know. Don’t wanted to be tested, don’t want to know. We’re just going to go about, get married, have kids, go about our lives as we normally would” and that was their choice.

Michelle Meyer: People who I’m related to who have died or are living with Huntington’s, I do not know well at all. They are not close to me. I have not watched parents die of Huntington’s. I have not had that experience. Nor am I expecting to get it. I mean, I’m cognizant that it’s possible, so when I got my result at MGH, they slid a piece of paper like a scatterplot across the desk, and I think it maybe had like 10 or 12 data points on it of 37s. It was all over the place, of people who were 90 and symptom free, and people who were 30 and had manifested the disease, and everywhere in between.

Michelle Meyer: That has tremendous ascertainment bias. So, I would love personally both as someone who has to live with this 50/50 risk. First it was 50/50 risk, had I inherited my parents’ bad Huntington allele, and then it was a different type of 50/50 risk. Now it was, “Well, you’ve got this allele of 37, but will it manifest in disease in your natural lifetime? Let’s go with 50/50 and call that your odds, shall we?” Based on 12 data points, right?

Michelle Meyer: So, as someone who’s living with that, and also as just someone who is very passionate about evidence based everything, I would love to see something like what we’re doing here at Geisinger with [Bracco 00:41:19], where we’re quasi screening healthy populations to see what the actual incidence is. I have not pushed that. I don’t know whether it’s I’ve just been busy with other things and it’s the secrecy stuff, or whether there’s a part of me that …

Michelle Meyer: ‘Cause I’ll admit, I mean, I’m normally just fine. I really am. Every once in a while, when I dig into the literature, especially of the subclinical stuff, I mean, it does kind of … It’s a little bit like having a breast exam and they found a lump and you have to wait for some period of time before the mammogram and the ultrasound. For your audience, this might be more of a little more accessible experience, and it’s like every, you’re sitting there palpating this lump and, “Oh, my God, is it a tumor that’s growing right this second in my body?”

Michelle Meyer: It’s kind of like that’s always there, and so there could well be a part of me that says, “If I get deeply into this work, am I just going to be experiencing that in a more intense way, and do I really want to go there?” That could be it, but I also think that it seems really unlikely that anyone is going to want to do anything like that project. It’s just so … I mean, even some of the people who have been advocating in the space for decades are not supportive, as I understand it, of yeah, let’s get clear on what the prevalence is, so yeah.

Misha Angrist: Thanks so much for sharing that.

Michelle Meyer: You’re welcome.

Misha Angrist: Many, many thanks to Michelle Meyer, and to you for listening to the Genome podcast. An abbreviated version of this interview can be found in the fall 2017 issue of Genome magazine, which comes out quarterly, and is available online for absolutely free at GenomeMag.com, and by mail. Go to GenomeMag.com and click subscribe at the top of the page for a free, dead tree subscription. Talk to you next time.