August 2014 – Genotopia

A little cold water

August 28, 2014August 27, 2014 by Nathaniel Comfort

[Edit: I’ve had many positive comments on this post but one negative one keeps coming up, so I want to address it. A few people have felt it makes those who give to ALS feel stupid or duped. Not my intention at all. I’ve had it with ice buckets, not ice-bucket donors. My criticism is of a system, not individual people. I’ve added a line to the disclaimers to address the ALS donors, who obviously are acting with good intentions.]

I’ve had it with ice buckets.

Amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) is the disease of the moment. Not because it’s the most important medical problem today, but because it’s got a clever bit of marketing that got lucky and went viral. Kudos to the ALS Association’s ad campaign person. The ice-bucket gimmick has nothing to do with ALS—you could ice-bucket rectal cancer just as logically. Maybe more so, in fact, given most people’s physiological response to a couple gallons of ice-water. But hey, for whatever reasons, it has worked brilliantly. But I’m not dumping water on my head and I’m not writing the ALS Association a check. Giving money to biomedical research is like loaning Bill Gates busfare.

There’s a long list of people who could be pissed off at that position, so before I make my case, a few disclaimers:

First, I have great empathy for patients with ALS and their families and loved ones. It’s an awful disease and I hope a cure or at least an effective treatment is found. Soon. I am all for curing ALS. Also, the ALS Association is a fine charity. According to Charity Navigator, they have a high degree of transparency and use only a small percentage of their money for administrative costs. Also, I don’t mean to make those who have already given to ALS feel bad or misled. There’s always a benefit with an act guided by conscience. I’m just going to make the case that the charitable bang/buck is small.

Finally, I feel for scientists. I recognize that funding for the National Institutes of Health—the major federal agency for biomedical research—has been cut this year. But still, I don’t see biomedicine hurting seriously for money. I think that of all the industries that are working with tighter budget constraints, relatively speaking, science is not feeling the most pain, and offsetting its budget cutbacks is not going to have much effect on how soon a great new drug for ALS is found. I love science because it’s cool. But as charity goes, I think it is a pretty low return on investment. Here’s why.

I study biomedicine as a social enterprise. I look at it in the context of its history and in the context of contemporary society and culture. The majority of breakthroughs in basic science and almost all translations of basic science into new drugs and other therapies occur in the top university medical schools. I happen to work at one of them; the other biggies include U.C. San Francisco, Harvard Medical School and associated Boston-area hospitals, Baylor, Memorial Sloan-Kettering, Michigan, and a few others.

Science is kind of like a country club, in that it’s hard to get in and those who do have money. In order to enter an elite science building, you probably have to get past a security guard. Inside, there is wood paneling, lots of glass, gleaming chrome, polished floors. It’s like Google, only with worse food. If your building does not look like this—if it’s more than 20 years old—there is probably a fundraising campaign to replace it with something swankier.

It looks corporate because it is corporate. A lab is basically a business. Principal Investigators (PI’s, i.e. faculty lab heads) are entrepreneurs. Their principal role is development; i.e., raising money. The company staff consists of graduate students, postdocs, and technicians, and however many administrators you can afford. It’s a for-profit business, in that all or part of the PI’s salary comes from grants. Often, PI’s also literally run companies on the side; a PI without a little start-up is ever so slightly suspect, as though she’s perhaps not quite ambitious enough for the big leagues. A cut in federal funding means that competition for grants will be stiffer. But the elite schools, where most (not all, I recognize) of the most fundable grant applications come from, have “bridge funding” to help such investigators. The system can absorb some cuts.

The scientific community as a whole is rich, white, smart, and obviously highly educated. Getting one of these PI jobs takes brains, dedication, and in most cases, a good family background. Many scientists have parents who were scientists, and most come from middle- to upper-middle class backgrounds. It helps a great deal to be white. Every basic science department in my school cites diversity as one of its weaknesses. For a variety of reasons, it’s really hard to get to grad school if you’re black. I believe this to be mostly a failure of our education systems before grad school: basically, as a society we have decided to stop educating poor kids. My school makes a good effort to accept and nurture minority students. It just doesn’t get very many.

Those who do get into grad school have their schooling paid, get health insurance and a stipend of $30,000 a year or more. Postdocs make significantly more and starting salary for a beginning faculty member is north of $100,000, plus a start-up package of half a mil or more to get your lab going. Science is full of rich prizes, for best student paper, best article in a journal, best investigator under 40, best woman scientist, lifetime achievement, and so on: these can range from a few thousand to a million dollars. The prize money comes from professional societies, which run mainly on dues from scientists, and from private companies interested in developing science. In short, scientists have money to throw around.

Giving money “to ALS” feels good, but what does it actually buy you? Say a scientist has a gene or a protein and she thinks it’s the coolest thing since canned beer. But to work on it, she needs money. So she scans the grant opportunities and finds a disease she can plausibly link to. Let’s say it’s ALS. She dolls up her little geeky research project in a little black dress and stilettoes, with an up-do and some lipstick, hits “Submit” on the NIH website and sits back and waits for half a year for her funding score. The budget cuts mean that the funding cut-off moves down a few points, say from 25 to 20. Her application has to be in the top quintile to win. The ice bucket money, though, means she can apply to the ALS Association and have another chance. It effectively raises the cut-off again, back to 25 or even 30. That’s the impact of all this feel-good pop charity—a few percentage points on the funding cut-off.

The standard argument is that research needs to move forward as fast as possible: more grants=faster cure. That’s not obviously true. I’m not aware of any studies that examine that hypothesis; it’s simply taken as self-evident. If it is in fact true, the effect will probably be small. It is unlikely to bring new people into science. Most of the extra funding raised by the ice bucket challenge will go to people already working on ALS-related research. And again, as tragic as ALS is for those who live with it, it’s not the most dire medical issue facing us today.

For all these reasons, I’m interpreting the ice-bucket gimmick as a general challenge to give to a worthy charity. It’s so easy to forget to give back to the community. We’re all struggling financially in our own way, so we forget how rich we are in the bigger picture. All these ice buckets reminded me of this. I’m hardly rolling in dough, but I can find a hundred bucks. So while Sarah Palin and Patrick Stewart and everyone else is apparently writing checks to ALS, I gave $100 to the East Baltimore Community Development program of the Living Classrooms Foundation.

Baltimore, a city of 620,000, has a poverty rate of 25%. That’s about 150,000 people. Take the bottom quarter of them and you have more people in truly grinding poverty in one city than have ALS in the entire country.

And best of all, there is already a cure for poverty: money. Money well spent, of course—on education, nutrition, counseling, childcare, transportation, career guidance and training. My C-note could buy lunch for 20 kids. It could buy chalk for a hundred classrooms. It could enable a single mom to take the bus to work for a month. If transparent, responsible, effective non-profits like Living Classrooms had $40 million, they could lift an entire neighborhood out of poverty. That would mean less gun violence, fewer murders, less drug use, more economic development for my city. Maybe one of those kids will go to college, get interested in science, and apply to grad school.

So here’s my “ice-bucket” challenge: skip the bucket, let biomedical research take care of itself, and donate to an underfunded charity that will do some direct and long-term good.

On city life, the history of science, and the genetics of race

August 28, 2014August 9, 2014 by Nathaniel Comfort

BAM! A sharp thud on our little back deck about a yard from me the other day. I looked and saw a brick, lobbed over the fence by three kids in the alley. I yelled an obscenity and dashed for the gate. The kids took off and I gave chase, barefoot, indifferent to the shards of back-alley glass. The boys were young—between 9 and 12—brown-skinned. They outran me easily after a couple of blocks. But I got close enough to get a good look. They were clean and well-groomed. Nice-looking kids. They probably had moms who would give them a licking if they knew what their boys had done. Fortunately, no damage was done. I didn’t get a concussion or a bone bruise. It didn’t total my laptop. It didn’t shatter a window. The event was not serious in the wider scheme of city crime. But it was an invasion, a violation. It pissed me off and I thought about it the rest of the day. I weighed their crime as racially motivated. They were black and I am white and they probably wouldn’t have thrown that brick into a black family’s yard. Then I thought about it as motivated by class. Houses in our neighborhood are modest, but probably by those boys’ standards we are wealthy. I thought about how much violence lay behind the gesture. The beefy white cop who took my statement told me to dispose of the brick safely (lest it explode?) and suggested I work in a safer place than my back deck. The brick remains, as a reminder, and I continue to write in the garden. I will not be cowed by a nine-year-old. In the end, I concluded that class was more important than race—and mischief more important than class. The incident was the more troubling because two days earlier, I had also been writing outside when helicopters began circling. We live near a hospital with a Medevac, and traffic copters occasionally make a few passes when there’s a jam or an accident on a nearby artery, so a couple of minutes of their drone is normal. But these persisted, and then I saw that they were black police choppers. A few minutes later, a woman ran up our small one-way street screaming and wailing into her cell phone. We thought we heard her scream, “My baby!”

I checked the Baltimore PD Twitter feed and my heart sank:

Shooting. 3600 block Old York Road. Adult female and juvenile reported to be shot.

It was about five blocks from my house, across the busy thoroughfare marking my neighborhood from the friendly but sketchier one to the east. It’s not “The Wire” sketchy. Just a lower-middle-class neighborhood, mostly black, higher-than-average unemployment rate, lots of families and low-budget hipsters. Shootings are rare there, and broad-daylight gunplay is rare anywhere. But this particular afternoon, three-year-old MacKenzie Elliot was playing on the porch. Caught a stray bullet. Was dead by sundown. The piece I was trying to write that weekend was a review of several books, on genetic and cultural theories of race. One is Nicolas Wade’s A Troublesome Inheritance, which received a satirical review on these pages. It is a pernicious book, a defense of white privilege on biological grounds, cloaked in the same phony tone of reason that eugenicists and anti-evolutionists have evoked for decades: I just want to talk about this issue. Science has to be able to investigate any question, no matter how unpopular. Help help, the Political Correctness Police are trying to silence me. Blah blah blah.

In the early 1980s, I learned that the nature/nurture controversy was officially over. The Victorian polymath Francis Galton had coined the phrase “nature vs. nurture” a century before.

Everyone knows now that it’s a false dichotomy. Everything interesting is shaped by both genes and environment, and moreover, genes and environment mold one another. The relative influence of genetics on a trait is not fixed; the trait may be primarily genetic under some conditions, primarily environmental under others. Scientists know this. Science journalists know it. Scholars of science know it. We have moved past it. Twenty-first century biology is about the interplay among heredity and environment: gene–gene, gene–environment, and environment-environment interactions.

Except it isn’t. Why else do we still have books like Wade’s? If anyone ought to be up on the latest findings in genetics it ought to be him, a long-time reporter on the genetics beat for the New York Times. Yet instead of providing a fair survey of the field as he was trained, he chose to be persuaded by a narrow slice of work that continues a long-discredited scientific tradition. One focusing on the biological race concept and its supposed connections with intelligence, sexuality and other tinderbox issues. As Sussman shows, much of this research is sponsored by the blatantly white-supremacist Pioneer Fund. When it comes to those qualities we think of as quintessentially human, the basic question of nature or nurture seems independent of the state of scientific knowledge. The question returns with force whenever the trait is morally charged. Sexuality. Violence. Intelligence. Race.

Since the 1970s, the brilliant Marxist population geneticist Richard Lewontin has been arguing that the essence of using genetics as a social weapon is equating “genetic” with “unchangeable.” For decades, Lewontin has been pointing out examples of how that’s not true. It’s even less true now, with biotechnology such as prenatal genetic diagnosis and genome editing. Increasingly, the eugenicists’ dream—the control of human evolution—seems to be coming within our grasp. The new eugenicists want to give individuals the opportunity to make the best baby money can buy. No government control, they insist, no problem: if the free market takes care of it, the ethical problems disappear. Adam Smith’s invisible hand will guide us toward the light. As we take control of our own children’s genomes, the rich white people may have rich white babies, but, once we equalize access to whole genome sequencing, IVF, and prenatal genetic diagnosis, then poor black couples can have,…um…the smartest little black babies they can. And so can the Hispanics! And the Catholics who believe procreation shouldn’t require intervention, well they can produce “love children,” just like in GATTACA. It’ll all be fair and market-driven, once we socialize it a little bit.

So why are we even still talking about race and IQ? To Wade and others who say that it is a reasonable scientific question, that proper science has no politics and that the Morality Police have no business blocking scientific progress, I respond: What progress? What benefit? In order to frame this as a scientific question one has to define race, and any definition of race has a moral dimension. There is no way to ask whether racial associations with IQ are “real” without an agenda. The association of race and IQ is a legitimate historical question, but it must be acknowledged that even the most objective historian can only be interested in that question for moral reasons. If the scholarship is good, the agenda will be transparent, evaluable, debatable. But not absent. A good scholar (or reporter) will seriously investigate other viewpoints, present all sides. But he or she will not make pretense to absolute objectivity. The great danger of scientific investigations of questions such as race and IQ is just that pretense.

Science has immense cultural authority—it is the dominant intellectual enterprise of our time. Consider the state of funding or education for “STEM” (science, technology, engineering, mathematics) fields versus that for the humanities, social sciences, or arts. A good deal of science’s cultural authority stems from its claims to objectivity. Thus when a scientist investigates race and IQ, or a science journalist writes about it, they can invoke a cultural myth of science as having privileged access to The Truth. Not all do it—those with historical sensitivity recognize and teach the fallibility of science. But it’s common enough, even among experienced science educators and reporters, to be a crucial justification for the scholarly study of science as a social process. Science has a potent Congressional lobby. Like any industry, it needs watchdogs. Science is not just any industry. Aspects of it remain curiosity-driven, independent of the profit motive. It has an aesthetic side that unites it with the arts. And yet, for many types of questions, it provides a pleasingly rigorous set of methods for cutting through bias and pre-expectation. When scientific methods are pitted against superstition, belief, and prejudice, I side with science every time.

But when you study a lot of science; when you examine it over broad swaths of geography and time, rather than focusing on one particular tiny corner of it; when you study the trajectories of science; when you study the impact of science; when you examine the relationship of science to other cultural enterprises; you find that scientific truth is always contextual. The science of any given day is always superseded by the science of tomorrow. Despite popular myth, science does not find absolute Truth. “Science erases what was formerly true,” wrote the author John McPhee. When I was in college, brain-cell formation stopped shortly after birth. The inheritance of acquired characteristics was debunked nonsense. Genes were fixed and static. Humans had about 100,000 of them. IQ did not change over one’s lifetime. There were nine planets in our solar system. All of that was scientifically proven. None of it is true any more. Only a scientist ignorant of history can be confident that what she knows now will still be true a generation hence.

Which brings me back to the murder and the brick. On one level, the shootings a few blocks away were another incident of violence, probably drug-related, in a poor, predominantly black neighborhood. When they catch the bastard that shot that little girl, if they do a DNA test they might find genetic variants that occur with higher frequency in black males than in the population as a whole. If I catch the little punk who nearly beaned me with that brick, should he spit on my clothes and were I to have it analyzed, the lab might find SNPs in his DNA associated with a predisposition to violence. Whether those differences exist are legitimate scientific questions. But they are moot. The only reason to ask them is to prove an innate predisposition that, historically, has tended to foster racism and hinder social change. They may be legitimate scientific questions, but they’re stupid questions, and the motives of anyone who asks them are suspect. It’s not censorship to declare certain inquiries out-of-bounds. And people knowledgeable about science but outside the elite ought to be part of the process. Scholars. Journalists. Technicians. Students. Research funding should be less of a plutocracy, more of a representative democracy, so we can make better decisions about what questions are worth asking. In my case, the right questions are not “What biological differences account for that brick or that murder?” They are, Who is that brick-throwing kid’s mom? Can I, a “rich” white male, win her trust enough for her to let me into her house, to tell her my story in a way she can hear, so that she can discipline her child and get him back on a more positive path? What can we do to take our neighborhoods back, to make them not shooting galleries but communities again? How can we get people to get to know their neighbors, to keep their eyes open, to watch out for each other?

The other night, my wife took me along to an impromptu wake for the murdered girl, a five-minute bike ride away, near where the shootings occurred. In conventional racial terms, the crowd looked like Baltimore: about two-thirds black, one-third white (the latter mostly young), a sprinkling of Asians. But culturally, it was a black event, run by black women. The MC was the head of the neighborhood community association, a black woman. Words were said by the mayor, a state senator, a city councilwoman—all black women—and the governor, a white man. There was a prayer led by Sister Tina, a holy-rolling preacher who could make a middle-aged, over-educated, white atheist’s eyes well with her furious message of love and community. After the prayers and speeches, one young man threw down a Michael Jackson imitation, lip-synching and doing every move in Michael’s bag—full splits, knee-drops, and skids—on the coarse, hot Baltimore asphalt. The crowd whooped its approval. But the power that evening was held by the women. As we got ready to leave, I walked up and introduced myself to a few of those formidable, warm women. I threw my arms around Sister Tina and told her I thought she was amazing. She beamed and said she could see that the light of God was in me, she could see that I understood. And maybe I did. I know too much about evolution to believe in a literal god, but our mutual warmth and shared ideals are real. It may have been a culturally black event, but all were welcome. I understood in a new way how race matters in exactly the ways, to precisely the extent, that we want it to. Searching for the SNPs that make “them” and “us” different, seeking differences in test scores between the mixture of genes and culture Americans call “black” with those we call “white,” divides us. But here in this corner of this city, we have opportunities to celebrate each other’s cultures, and we have opportunities to share each other’s grief. The more I take those opportunities, the less value I see in the sciences of human racial difference.