by Maud Newton
Misha Angrist, otherwise known as member four of the Personal Genome Project, has — along with Stephen Pinker and some other science-world luminaries — given permission for his entire genome to be published online. As a trained geneticist, he’s more equipped to predict the direction and effects of DNA research than the rest of us. His new book, Here is a Human Being, ponders the implications of this kind of bioforensics for our culture at large, and also for those of us, like me, who’ve already opened this Pandora’s box by subscribing to 23andme or one of the other personal genomics outlets. Will our information be kept private? Will assumptions be made, a la Gattaca and Brave New World, about our proper place in the world — our abilities, our intelligence, our likely mental health and physical prowess? Will doctors fine-tune treatments based on individuals’ genomes? Will insurance companies drop people more likely to develop certain conditions? Do we really want to confront the truth about our ancestors? The author fields my barrage of questions below — and will field more in-person tonight at McNally Jackson Books in New York City.
Holy crap, Misha, you’re making your entire genome public! Are you nervous?
I spend a lot of time worrying about the long-term consequences of opening the Pandora’s box just by joining 23andMe.
Hmmm. What is it you’re worried about exactly?
Well, in addition to being an enthusiastic neurotic, I’m a hypochondriac with health problems, and I guess I’m anxious that I won’t be able to get insurance coverage in my old age, and I’ll end up being yelled at and bossed around in some grannies’ ward with rows and rows of beds, like in Memento Mori
. Here Is a Human Being includes some pretty sobering stories of insurance companies — and even the military — booting people because they’re at high risk for certain genetic conditions.
True, although I suspect that those types of stories are rare. But even if they’re not, I believe that one way of combating/preempting that sort of behavior is by having a cohort of people putting it all out there and seeing what happens. I am fairly well convinced that if an insurer or employer used a Personal Genome Project participant’s data to discriminate against him/her, the personal genomics hive would raise holy hell and quickly create a PR nightmare for the perpetrator.
Ah, so participation is actually a kind of insurance of its own! Where do I sign up?
Yeah, if you fuck with me, then you fuck with all of the public genomes and arguably the entire biomedical research enterprise.
So you feel okay about disregarding that one doctor’s advice to stock up on long-term health insurance.
For me personally, since I don’t carry the most important and predictive genetic risk factor for late-onset Alzheimer’s, my likely eventual need for long-term care is not demonstrably greater than anyone else’s… indeed, by not carrying APOE4 one could argue that I might actually want to go with less long-term care insurance.
And see, here’s where one of the systemic problems lies. If an insurer knows I’m at high risk of developing Alzheimer’s, then that company will want to either not cover me or charge me a shitload. But if I know that I’m at high risk and my insurer doesn’t, then I will want to game the system and do what my doctor recommended and stock up on insurance. My hope is that one of these days we will come to our collective senses and opt for a single-payer system. I know: bwa ha ha ha ha ha.
Yeah, it’s insane to me that a single-payer system still isn’t even an option on the table. At this point it seems like the health care industry is the only business in this country still raking it in, apart from banks and big oil… But I’m getting off-track. Why do you think so many bioethicists are suspicious of DNA research, and particularly of making genomic data available to the masses?
Well, in my colleagues’ defense, the 20th century eugenics movement was not pretty. It gave pseudo-scientific cover to all sorts of horrors and bad ideas, some of which continue to die hard. I don’t want to minimize that.
Right. It’s important to remember that even one of the most respected jurists of the age was saying things like “three generations of imbeciles is enough.”
That said, a lot of bioethics tends to begin from the premise that science is harmful, that people cannot understand its risks or limitations, that whatever benefits there are must have some underlying capitalist motive, and that genetics will always be state- or corporation-sponsored and therefore should never be trusted. To many in the academic medico-legal-industrial complex, the idea that average people want access to this information, however preliminary, is still unthinkable and unpalatable.
23andme in particular, with its tie-in to genealogy, seems to stick in their craw. Like, DNA shouldn’t be fun, people! You mention that one scientist even compared it to astrology.
These are the persistent and pervasive criticisms of personal genomics: 1) that it’s useless; and 2) that it’s dangerous.
Yes, as far as having practical implications for one’s health, most of it is useless (today, anyway). But that doesn’t mean we’re not interested in it! We are constantly bemoaning the lack of science literacy in this country, but when DNA technology finally gets cheap enough to let the hoi polloi in, we say, “No no! It’s not ready!”
Or — and this speaks to the second criticism — we say, “You can’t handle the truth.” And I would readily concede that this stuff is not for everyone. If some people don’t want to know their genetic risk for X, Y or Z I don’t begrudge them and I don’t judge them. But I do want to know about my own and thousands of other self-selected people want to, too. And our numbers will only increase. In 2009 Francis Collins predicted that the day is coming when a full genome sequence will be a routine part of newborn screening. In this case I think he’s dead on.
I know you wanted DNA sequencing done to find out about your daughters’ risk for breast cancer because of your mom’s harrowing experience — two radical mastectomies. Can you talk a little bit about that?
My mother was diagnosed with breast cancer at age 42 (she is alive and well today, baruch haShem). Her youth at diagnosis, family history and her Ashkenazi heritage make it a real possibility that she carries a mutation in a gene for hereditary breast cancer. While it’s unlikely I would get breast cancer, I could transmit that mutation to my daughters. Since I was going to put everything on the web, I wanted to see my hereditary breast cancer genes. The idea was that if they were at risk they should find out from me and my wife, not from some intrepid genome blogger. My BRCA genes are clean, thankfully. And I realize that this was a luxury that other public genomes will probably not have.
God, what a relief! I joined 23andme for far, far less serious reasons, partly to find out about and obsess over health risks, sure, but mostly to learn more about my grandfather, who married thirteen times, died the year before I was born, and supposedly had only one surviving child, my mother.
Wow! That’s some serious serial monogamy.
Yup, although some of the unions were pretty short-lived. One wife shot him in the stomach after they’d been married only a few weeks.
I think your story raises a point that often gets overlooked. A lot of doctors say, “Why do you need a genetic test? Just look at your own family history.” Well, not everyone has access to his/her family history: What if you were adopted? What if you were conceived via an anonymous sperm donor? What if your family refuses to discuss certain aspects of your ancestry? And of course it’s not either/or: family history and personal genetic testing are not mutually exclusive.
I’ve found a number of relatives my racist father wouldn’t be too thrilled to encounter at his next family reunion.
Families can learn surprising and highly charged things about their histories, whether through genetic testing or simply by finding old correspondence in the attic. The Thomas Jefferson-Sally Hemings contretemps is a great example of both.
Speaking of using DNA to determine ancestry, I was fascinated by the story of Kirk Maxey, the former sperm donor who may have fathered up to 400 biological children.
I’ve met people whose only response to that story is “eww.” And I think that that’s a real shame. Kirk is a wonderful guy who was an ingenuous medical student in the late 70s/early 80s and donated sperm to make extra money and because he and his wife thought it would be an altruistic thing to do. They also thought that most of his donations were going to research, when in fact none of them were.
And then Maxey decided he wanted to find all his children.
He is really the antithesis of the stereotypical frat-boy sperm donor getting paid to jerk off. He feels terrible about what happened and wants to know that his biological children are okay.
His donations were split, you say, sometimes by as much as 8:1. Jesus.
According to Kirk, by diluting donations down to levels that were unlikely to impregnate, the clinics could force women to buy additional vials of sperm. In other words, poor quality control was a money-making proposition.
Sperm banking was — and in many ways, is — the Wild West: it is an almost completely unregulated industry. Wendy Kramer, who founded the Donor Sibling Registry for donor-conceived kids to find their biological half-siblings, has a million stories about the shit that goes on. I hope she writes a book someday.
What do you think about the arguments that DNA research is dangerous because it’s inherently deterministic?
I think that DNA research itself has shown that that argument is utterly specious. We know, for example, that the variation in a trait like height, which is highly heritable, is caused by hundreds of thousands of genetic variants. So yeah, height is genetic — if our parents are short, then we’re likely to be short. But the idea that we’re going to create some designer eugenic panel to select for genes that will give us tall kids is laughable. And similarly, we know that common diseases tend to be caused by a combination of many genes and the environment, probably interacting in subtle and complicated ways that make a deterministic scenario extremely unlikely.
When I look at my own genome I see dozens and dozens of broken genes. I see hundreds of mutations that, by all rights, should have put a stop to me when I was a microscopic ball of cells inside my Mom. But here I am, reading Harry Potter to my healthy and amazing kids, both of whom have half of my broken genes… and half of their otherwise perfect mother’s.
So you don’t envision a Brave New World- or Gattaca- type result?
Not in any monolithic, predictable way. However… I think what will happen is that more and more people of reproductive age will undergo carrier screening in order to avoid conceiving kids with relatively rare genetic diseases that are caused by single genes gone awry. I’m talking about cystic fibrosis, sickle cell anemia, muscular dystrophy, etc. One can imagine a day when having kids with those maladies will be stigmatized — a kind of GATTACA-lite.
That would suck, IMHO, and perhaps not only because of the icky eugenic implications. It could also suck because the genome is a dynamic thing, and a balancing act. Sickle cell trait has persisted because carrying it protects one from getting malaria. Who’s to say that carrying one copy of a cystic fibrosis mutation doesn’t similarly protect us against cholera or various diarrheal illnesses? If we eliminate those mutations from the population, are we opening the door to a future of intestinal problems?
After the Tuskegee “studies” of untreated syphilis in African American males, many African Americans are pretty wary of bio-medical research.
To say the least! Anyone interested in the full, horrific story should read James Jones’s book. And of course, not long ago Susan Reverby discovered that similar atrocities were taking place in Guatemala in the 1940s.
Really sobering stuff. And yet Henry Louis Gates — you say he’s a “keen student of genetics” — believes “we have to become scientifically literate so that we can learn how to intelligently challenge the potential abuses.” Which sounds similar to your own perspective.
I couldn’t agree more. This doesn’t mean that everyone needs to go out and participate in research or get their genomes done. The former costs time and the latter costs money. But I think we owe it to our kids and grandkids to foster that literacy early on for all sorts of reasons: to avoid and confront abuses, to improve the public health, to keep us globally competitive… and because science is cool!
Tell me how Francis Collins, a fundamentalist Christian given to religious pronouncements on genetics, ended up at the head of the National Human Genome Research Institute.
I think that the full, unexpurgated answer to that question is probably well above my pay-grade. Francis was an accomplished researcher on human genetic disease for many years and he was a loyal soldier at the head of the National Human Genome Research Institute. He is politically savvy and is also seen as a consensus-builder. And while many in the science community are wary of his religious beliefs, I think that those same beliefs are exactly what endear him to many in Congress on both sides of the aisle, but especially to Republicans. And I think that that combination made him irresistible to the Obama administration.
He was supposed to be the villain of your book, but, once he steps down from that position, he turns out to be, if not exactly the good guy, a lot more nuanced than you expect.
You know, I’m not enamored of everything he does, but on personal genomics he turned around completely and I was surprised and impressed by that. He came to accept the idea that maybe Prometheus shouldn’t have his liver pecked out for all eternity for giving fire to the masses, and on the contrary, maybe it was actually a good thing.
Maud Newton and Misha Angrist continue the discussion about Here is a Human Being tonight at McNally Jackson.