A little cold water

[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.

Serving suggestion.

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.

A young Lou Gehrig.

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.

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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.

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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

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.

Sir Francis Galton

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.

“Colonel” Wickliffe Draper

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.

Parents of the murdered girl

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.

DNA Day Hype

Happy DNA Day everyone. On this date in 1953, Nature published four articles on the structure of DNA, including the 800-word, data-free masterpiece by Watson and Crick—but also the work of Rosalind Franklin, Raymond Gosling, and Maurice Wilkins that did actually have data, and without which the first Watson and Crick paper would have been handwaving fluff. The Watson-Crick paper is a rightful classic of the scientific literature, but it’s too easy to forget those who provided the evidence to back them up.

MRC Biophysics Unit from PaulingBlog.
The MRC Biophysics Unit in 1951, from Paulingblog. Wilkins is scrunched up at the far left. Gosling is on his feet straining his lower back at the right.

To celebrate, the genetic testing company 23andMe posted a DNA Day infographic that is a marvelous inadvertent evidence of genetic oversell. That’s the best kind, because it unself-consciously undermines its own claims.

Rosalind Franklin
An unusual image of Franklin at the microscope, and the familiar portrait, from fantagabriele.blogspot.com.

These claims are about health. Last year, the company was ordered to stop marketing their genomic testing service as a health service and it agreed to stop selling it altogether. It would henceforth focus on the genealogy side of their service. They are evidently sneaking back in, though, with ads—sorry, “infographics”; so much more documentary-like than “advertisements”— like this one.

Ninety-one percent of Americans, it trumpets in giant type at the top of the ad, “correctly believe that knowing their genetic information can be helpful in managing their health.” On one level, Well, duh. Everyone knows that some diseases run in families: you don’t have to have a high level of genetic literacy to be aware that knowing whether your mother, grandmother, great-grandmother, and aunts have had breast cancer is a pretty useful little medical tidbit. The statement is worded so vaguely as to be meaningless. The remaining nine percent probably have some strongly hereditary learning disability that keeps them from correctly knowing how to feed themselves.

On a second level, though, I’d like to know what percentage of Americans incorrectly believe that knowing their genetic information can be helpful in managing their health. What percentage, for example, think that having one of the BRCA risk-factor alleles means they are going to get breast cancer unless they have a mastectomy? What percentage believe that a 300% increase in risk for an extremely rare disease—from one in 3 million, say, to one in a million—is cause for alarm? What percentage think that the association of a single nucleotide polymorphism with a genetic disease means that biomedicine has the cause—let alone a cure—for that disease? What percentage of Americans, in short, have no understanding of probability, pleiotropy, penetrance, or gene–environment interaction, and yet read ads from companies such as 23andMe and think, “Yee-haw! I can learn what diseases I’m going to get, and which ones not, just by spitting in a cup!”

Watson and Crick
The dynamic duo. From The Sandwalk.

The infomercial continues downward, with more statistics: smaller numbers in smaller type. Thirty-one percent know that genetic testing can “show their body’s ability” to metabolize caffeine, etc. At the bottom, though, the numbers get large again. “People still need a refresher on the basics of genetics,” they say. Forty-nine percent of women “believe their sex chromosome is XY.” Their sex chromosome is XY? What percentage of genetic testing companies employ staffers who can write simply and accurately about genetics? Another statistic: forty-one percent don’t realize DNA is organized into chromosomes.

Finally, in tiny print at the very bottom, they tell us that the survey was conducted on 1000 “nationally representative Americans” by an “independent research firm, Kelton.” Kelton Global is a marketing firm that specializes in repositioning companies that have lost market share or want to break into new markets. Their motto is “helping brands navigate change.” They take surveys, track metrics, re-brand companies, and so forth. Their niche is using numbers to persuade and making statistics say what their clients want them to say.

Let’s make a few postulates for the sake of argument. Let’s say that this is a real sample, designed seriously by people who understand statistics. Let’s say the questions were worded better than this and that those questioned understood what they were being asked. Let’s assume the ad was just badly written. It may be that these are totally unjustified, but we’ll give them the benefit of the doubt for just a moment.

If their numbers are in fact meaningful, what they show is that people are buying the hype about genetic testing without understanding it. How happy should we be that people who don’t know what a chromosome is nevertheless believe that genetic testing can tell them about their health? We’re not talking about informed decision making about subtle and complex data; we’re talking drinking the Kool-Aid. What this ad says, most of all, is that even though officially 23andMe is out of the health-claim game, they are still very interested.

What If Vaccines Caused Autism?

Guest Post by Mark A. Largent

Medical advice—long under the authority of doctors and public health officials—is now freely available on the Internet, and nowhere are the effects of this trend more visible than around the issue of vaccines. The web provides easy access to the kinds of criticism of vaccines that was once available only from fringe natural-health booksellers and alternative medical providers. In an effort to counter these claims, mainstream healthcare providers offer orthodox scientific and medical information to consumers on the Internet. The result is a set of competing claims online that are nearly impossible for parents to reconcile into a coherent plan for vaccinating their children.

Reports of two court cases have recently emerged online that powerfully demonstrate how readers on either side of the debates over the safety of vaccines are armed with evidence to support wildly divergent views. Among mainstream medical providers, the widespread consensus is that there is no causal link between vaccines and autism. However, over the last several weeks, news has circulated on alternative medical sites about two federal court decisions that “confirmed … that there is a link between the MMR [measles, mumps, and rubella] vaccine, autism, and stomach disorders.”  Citing court records, news reports (which have also been published in mainstream sources like the Huffington Post) purport to show “repeated admissions by drug companies and government alike that vaccines do in fact cause autism.”

Here are the facts of the cases: The federal court that hears cases of people allegedly injury by vaccines has recently decided in favor of the parents of two children who say that their children developed symptoms of autism because of the adverse side effects of vaccines. The so-called “vaccine court,” which was established by the 1986 National Childhood Vaccine Injury Act, is charged with resolving vaccine injury claims and provides compensation from a trust fund that is financed by a 75 cent excise tax on every vaccine. Vaccine manufactures are protected from lawsuits because the vaccine court hears claims and pays injured parties from the trust without ever assigning fault. The court typically pays out between $100 and $200 million per year.

In the first case, the court decided that a 10-year-old boy from California named Ryan Mojabi suffered a “severe and debilitating injury to his brain, described as Autism Spectrum Disorder” that was caused by brain swelling that occurred after he had been vaccinated with MMR. As a result, Ryan now suffers from the symptoms associated with autism. He was awarded an undisclosed amount that could total $10 million or more.

In a second case, which had been in and out of court for nearly a decade, 15-month-old Emily Moller had developed a high fever and seizures after being vaccinated with the combined vaccine against diphtheria, pertussis, and tetanus. She has been diagnosed on the autism spectrum. Late last year the case was settled, and Emily will receive an estimated $9 million in compensation.

These cases provide a tremendously powerful rhetorical weapon to those who claim that vaccines can cause autism. Reports of the cases are circulating widely on the web, and they add fuel to the online debates that confront new parents as they seek out information on vaccines. Both children had suffered from rare but documented adverse side effects from being vaccinated, and in both cases serious long-term damages are evident. It is doubtlessly unfortunate that these children were injured in the course of receiving routine vaccines, but cases like theirs are very rare, and vaccines safely protect the vast majority of children against diseases that once caused considerable death, injury, and discomfort.

How, then, did we end up in a situation where incredibly uncommon cases like Ryan’s or Emily’s have so much rhetorical power?  And, what are we to make of these two cases?  The problem, I submit, does not reside in the vaccines themselves, but in the fact that we have failed to have honest conversations about difficult issues related to vaccines.

Today’s concerns about vaccines can be traced to allegations that emerged in the late 1990s of a link between vaccines and autism. In Britain, a preliminary report by a research team suggested that the MMR vaccine might sometimes damage children’s digestive tracts, which in turn might lead to developmental disorders associated with autism. At about the same time, as part of an overhaul of the Food and Drug Administrative, reports emerged that a mercury-laden preservative—Thimerosal—had long been used in childhood vaccines. The symptoms of mercury poisoning share many similarities with autism and public health authorities had long warned parents of the dangers of heavy metals like mercury and lead, so parents were shocked to learn that their children had been injected with vaccines that contained mercury.

Both of the scientific controversies that alleged an association between vaccines and autism were resolved by 2004. Today, the consensus of the scientific and medical communities is that neither the MMR vaccine nor Thimerosal is responsible for the recent rapid increase in the diagnoses of autism. Instead, most authorities point to increasing awareness, relaxed diagnostic criteria, and a number of social and economic incentives for diagnoses to explain the increasing rate of diagnoses.

While the scientific controversy over the alleged link between vaccines and autism has been resolved for almost a decade now, the political controversy has continued to rage. Advocates of the claim that vaccines cause or trigger the symptoms associated with autism have developed an alternative set of news sources to provide evidence to those who believe that vaccines are unsafe and that the government and mainstream media are covering up the evidence. As the potentially complicated discussions about the merits and potential problems of the modern vaccine schedule have become confined almost entirely to the vaccines-cause-autism debate, advocates on either side of the issue promulgate irreconcilable claims.

Image by the author.
The total number of shots in the routine vaccination schedule up to age 6. Image by the author.

In my 2012 book Vaccine: The Debate in Modern America, I argue that the rapid increase in the size of the vaccine schedule and Americans’ increasing concerns about vaccines were not merely coincidental. Under today’s vaccine schedule a fully vaccinated 6-year old will have received about three dozen inoculations of over 50 vaccines, most of them in the first 18 months of life. This has motivated considerable concern among parents about unintended side effects of vaccines. About 40% of American parents report that they have intentionally refused or delayed a recommended vaccine for their children, and about 1 in 8 parents have refused a state-mandated vaccine. Safety concerns about new vaccines and a widespread belief that we give too many vaccines, too early, against too many diseases are at the root of many parents’ concerns. Vaccine-anxious is the term I used for people who expressed concerns like these while generally accepting that vaccines are usually safe and effective. Elsewhere, I have argued that we ought to be very careful about mistakenly labeling vaccine-anxious people as anti-vaccinators. In terms of maintaining high levels of vaccine compliance, they are effectively “swing-voters,” and it is vital that we keep them within the fold. By mislabeling them as anti-vaccinators, we push them into the arms of those who have amassed ample evidence to support their fears about unintended side effects from vaccines.

Concerns that vaccines might cause autism are actually a proxy for a much more complex set of concerns, which I describe in the book. Some of these are practical, like how we cram as many as six vaccinations into one office visit. Others are moral, because half of childhood vaccines were researched and produced with the use of cells derived from aborted fetuses. Still others are deeply philosophical, including concerns that we have entered a realm of medical enhancements that fundamentally alter human beings. The vaccines-cause-autism proxy debate allows us to avoid actually engaging these complicated topics. It also allows many different views to gather under a single set of claims, which explains why criticisms of vaccines are launched by voices from every corner of the political spectrum.

The two cases from the vaccine court that have generated so much discussion among opponents of the modern vaccine schedule are influential only because we have failed to engage the real issues that animate the vaccines-cause-autism proxy debate. Until we do, the large and active community of people who express serious concerns about vaccines will continue amass evidence that will adversely affect the decisions of millions of vaccine-anxious parents.

 

largentpicsmallMark A. Largent is a historian of science and medicine and an Associate Dean and Associate Professor at Michigan State University. His teaching and research focus on the role of scientists and physicians in public policy debates. His most recent book, Vaccine: The Debate in Modern America (Johns Hopkins, 2012) analyzes the vaccine-autism debate and contemporary concerns about the modern vaccination schedule. He is currently completing a book on the history of Reye’s syndrome.

23andMe, myself, and I

Here is the new ad from 23andMe that will begin airing shortly on cable TV*:

Genomics is going mainstream and the best news is first that it’s real simple and second that it’s all about me.

Let’s take the most obvious first: the “me” meme. Of course this relates to the company name, but the ad takes me to a new level. It makes “you” your DNA. I give them points for a couple of qualifiers — it “helps” make me who I am, one character says. But the overall message is that you are your genes.

It also exploits the meme of egocentrism. Nearly everything today seems to be all about me. Memoirs are the hottest genre of nonfiction. We have a magazine called “Self.” One of the most common themes on commercial websites is to have a “My [company name]” area, which usually just means they have your personal information to use to sell you more stuff. There’s even a “.me” internet domain, which they advertise “is all about you.” Who isn’t curious about himself? I’m the most interesting topic in the world! And 23andMe will tell me about my true inner nature for just $99.

One element of personalized medicine, then, is narcissism. Another, more noble, element is individuality. No one is more committed to his individuality than I am—but I’m also wary of its dark side: selfishness. I am struck by the single reference to future generations (“what I will pass on to my kids”). Again, this is a two-sided coin. In the Progressive era, the literature on genetic medicine emphasized family and community. There isn’t a hint of that here. On the one hand, then, the ad is free of the eugenic message of controlling human evolution. On the other, it’s relentlessly selfish. Most likely, the reason for staying away from issues such as family, community, and responsibility is that it enables them to steer way wide of abortion. This ad is about me, not my kids and not the future. That’s actually a new and rather radical development in genetics. 

A persistent theme in popular literature from the 19th century to the 21st, is that hereditary information provides certainty. This despite the fact that one of the signal insights from genomics is how uncertain its results are. Genetic medicine today is all about probabilities, and to make informed decisions based on our genetics we have to understand how probability works. The ad works against this principle, promising certainty where there is only chance. “Now, I know” says one woman. No, you don’t. Now, you have a sense of risk—not certainty. This is a dangerous over-simplification.

double helix
Simplified double helix from Watson and Crick’s 1953 paper.

This sense of simplicity is also carried in the graphics. Note how there’s hardly a double helix in it. “Your” DNA is reduced to circles, dots, and lines. They move and whirl entertainingly and there’s just enough suggestion of complexity to carry the message that you can’t understand “you” without them‚ 23andMe. If DNA becomes as central to identity as companies such as 23andMe want to make it, this ad suggests that its iconic image may fade. Even the stripped-down ribbons and bars version is simply too complex for TV.

karyotypedowns
An early karyogram (of Down syndrome) from the 1960s.
A comprehensive chromosome map from UCSF.
Screen shot from 23andMe commercial. Her “DNA” is those two colorful cylinders by her ear.

Most of the genetic “knowledge” promised is simple enough to be carried in the one- and two-syllable words that dominate mass-market media. Genetic medicine, stuffed as it is with Latinate and Greek words, is a tough sell in that market, but the ad pulls it off. At 0:21 we hear the longest word in the ad: “hemochromatosis.” The speaker pauses after the second syllable, to suggest empathy with viewers who get hung up on such terms. According to the Mayo Clinic website, hemochromatosis is indeed usually inherited, is rarely serious, is most common in men, and is the most common genetic disease in Caucasians. The ad script gives this word to a black man. Thus, one of the ad’s subtle messages is to erase racial differences—even differences supported by scientific evidence. It’s a commonplace in TV ads nowadays to feature men and women of many hues, but the 23andMe ad takes it a step further.

Another theme of the commercial is the way it suggests communities based around biological identities of health and disease. Once, our primary identities were with those who lived near us, or shared our work or hobbies or politics. But politics has become personal, our communities are digital, and our identities center around health. The sociologist Nikolas Rose calls this “biological citizenship.” The 23andMe website features forums where members who share particular mutations or risks can discuss diets, lifestyle habits, child-bearing decisions–or their pets, if they wish. They are communities based around health. The ad sends the message that race, class, and gender are no longer our defining social themes: what matters now is health and disability.

We hear so much about the importance of educating the public about their biology as a key component of contemporary personalized medicine, but in this ad that biology is reduced to bumper-sticker-like phrases about this circle “saying” I will have blue eyes and that line segment “saying” I have a risk of this or that disease. Learning about me will be fun, easy, and inexpensive. Thank goodness I can mail off a C-note, spit in a cup, and in a few weeks get a report that simplifies it all in language I can understand. The ad ends with a rainbow of people chanting “Me. Me. Me.” It’s the “Om” of the 21st century.

 

*h/t to Bob Resta for sending the link to the ad, and to Shirley Wu (@shwu) for a tweet that showed me that the hemochromatosis passage was too terse in yesterday’s version. I’d been wanting to add something about biological citizenship and Shirley’s comment suggested a way to do it.

 

 

 

Eugenics: the week in review

It’s been a great week for eugenics fans. First, we learned that California has been involuntarily sterilizing pregnant prisoners for the last 15 years–a haunting coda to Alexandra Stern’s chilling research on California’s 20th century eugenics program. Then Jon Entine wrote that eugenics is coming back and that’s just fine–provoking a lively exchange with yours truly. And now Dhruti Shah publishes an article on the BBC site claiming of all things that the Nazis “undermined” eugenics. Damn! And it had all been going so well up until then!

I’m gathering my thoughts on this issue, so stay tuned. But two points immediately leap out at me. First, both Entine and Shah are either ignorant or Panglossian about the early history of eugenics. Entine writes that some imagined “negative wing” of the eugenics movement “was never widely embraced.” Historians of eugenics agree that on some level, almost everyone in the Progressive era was a eugenicist, in the sense of advocating or supporting eugenics. There was no “negative wing”–there was only positive and negative eugenics, which were seen as complimentary.

And Shah writes that the Nazis’ use of eugenics “ended up undermining its credibility as a science.” Actually, its credibility as a science had been undermined for quite some time. By 1933, few seriously trained geneticists were willing to do more than sigh longingly for the day when we would know enough to direct our own evolution without wrecking the gene pool, society, or both. Its popularity as medicine and as population control rose steadily through and beyond the Nazi period. Indeed, the Nazis’ experiment in scientifically rationalized genocide coincided with the peak in sterilization and compulsory birth control of Americans and Scandinavians, and with explicitly eugenic programs ranging from immigration control to race- and class-based family planning on every inhabited continent of the globe.

The second point that immediately comes to mind is that these reports and commentaries suggest that my argument, which I made in the conclusion of The Science of Human Perfection, about eugenics regaining respectability in the post-genome age, is correct (see also my article “The Eugenic Impulse“). Scientists, at least, really do seem to be more comfortable with the term “eugenics” as a name for what they are trying to do. And what they’re trying to do, in a nutshell, is engineer ourselves a better future. To control human evolution.

The argument is that “Sure, it was done wrong before–but that was because we didn’t understand the science well enough.” That’s always the argument. Eugenicists have always said “Now we know enough to do it right.” And the next generation always comes along and clucks its tongue at the naivete and ignorance of its forbears.

No, it’s not because we didn’t understand the science. It’s because we didn’t understand society well enough before. And for all the remarkable technological advances of the last century, there’s scant evidence that we understand society much better now.

Major new cause of achievement discovered: studying

In a breakthrough discovery, researchers have identified a significant causal factor in educational achievement. It involves sitting one’s ass down at a table and opening books.

The problem of the underlying causes of educational achievement have stymied geneticists for years. Back in the Progressive Era, eugenicists attributed most of the variance in IQ, or intelligence quotient–a test designed to measure educational achievement–to a single Mendelian gene. Today, geneticists are just as obsessed with the genetic causes of IQ. After years of study, they have succeeded in spreading the effect out over several genes, while whittling the genetic basis down to under two percent of the variation. A recent study in Science magazine found that all known genetic variations combined explained 1.98% of the variation in achievement; the largest single effect of a genetic variant was 0.02%.

A different approach was taken by a researcher who prefers to be known simply as “Miss Perkins.” With her half-moon glasses, her hair done up in a tidy bun, and her sensible shoes, she is the picture of an elementary school teacher. Which she is. Collecting data over more than 20 years of teaching social studies to 3rd, 4th, and 5th graders at Martin Luther Malcolm Kennedy Roosevelt Elementary and Middle School, in Slippery Rock, Missouri, she has found that studying (STUH-dee-ying) explains a whopping 60% of the variance in educational achievement–no matter whether it is measured in grade-point average, standardized test scores, or subjective evaluations.

Another 30% of the total variation can be attributed to parents teaching their kids to put their butts in the chair and keep them there, without videos, music, or cell phones to distract them. A further 8% was attributed to nutrition.

The results have rocked the biomedical world. “I’m literally stunned,” said Dick Dorkins, of the Society for the Prevention of Intelligent design, Teleology, Or Other Nonsense (SPITOON), a biological think tank in Tumwater, Washington. “I feel exactly like I did last week when I accidentally got TASERED at the end of a bar fight.”

Not all scientists are convinced by the results, which involve 573 children and 1,719,000,000,000 base pairs. Nicholas Spork, a genomicist at Kashkow University, best known for its discovery of the “Republican gene,” said that Perkins’s “one-size fits all” approach was a “pedagogical dinosaur.” He was pioneering a personalized education approach, he said, that would tailor standardized tests to an individual’s genome. He also said he had applied for a federal grant to buy fourteen new high-speed sequencers that would identify 2 trillion base pairs in 93 seconds. “It’s just a hunch of course,” Spork said with a conspiratorial wink, “but I have every confidence that, with enough venture capital, in ten years we can double the amount of variance explained by single-nucleotide polymorphisms” (or “snips”). That would bring the total to around 3 percent.

Meanwhile, Miss Perkins continues her study—and her students continue their studying. She teaches about 60 students a year, in two classes. Her most high-tech tools are a globe, in the corner, a whiteboard (without a projector), and a terrific set of dry-erase markers, ranging from deepest violet through the spectrum to cherry red. But that’s not all. “Over the summer, a parent donated me a set of grays and blacks,” she said proudly during a quiet moment in class. “They were expensive, but oh, this will help a great deal. Nothing’s too good for my kids. Derek! What do you think you’re doing? Sit down and be quiet this instant, or you’ll have extra homework!”

Eugenics? In California?

Pacific Colony hospital in California, where they used to perform the sterilizations.

[UPDATE: Changed the link from the Sacramento Bee article to the longer report from cironline. h/t Alex Stern.] A quick note on today’s report from the Center for Investigative Reporting that at least 150 pregnant inmates in prisons in Corona and Chowchilla, CA, were sterilized against their will. Between 2006 and 2010. That’s TWO THOUSAND six. Another hundred or more may have been sterilized in the 10 or so years before that. (See also this HuffPo piece from last month.)

In an earlier post, I noted that when I applied for my marriage license in California, my betrothed and I received a state-sponsored booklet called “Your future together.” It was heavily gene-centered and mentioned that one can obtain free birth control and sterilization, paid for by the state. The historian Alexandra Minna Stern has written about the racial politics of California sterilization (see my review of her latest book–and then buy the book). Not surprisingly, the largest number of people sterilized are poor Mexicans, often illegal immigrants. Those surgeries, however, are at least nominally voluntary. Involuntary sexual surgery on prisoners sounds like something from the 1910s, not the 2010s.

In my book, The Science of Human Perfection, I note that eugenics is alive and well, though it often travels under an assumed name. The principles of informed consent can be–and as this report shows, are–used to mask persuasion. When that persuasion includes being made to “feel like was a bad mother if I didn’t do it,” it grades into coercion. Further, the ethics of sterilizing minority women in prison are even more complex than doing it outside—one wonders, for example, how many of those women were impregnated by prison guards. We should not let the drawing of apparently bright ethical lines allow us to become complacent about the gray, unlit areas where that good ol’ time eugenics can still flourish.

MMMOOOOCS!

 

 

Kashkow logo3lgKashkow University announced today the initiation of an innovative new program of online education that it says will create an “unprecedented revenue stream for non-profit institutions of higher learning,” while streamlining the university staff.

The Kashkow scheme is called Massive Money-Making Opportunity: Opting Out Of Courses! (MMMOOOOC!). Under MMMOOOOC! PROGRAM, Kashkow would eliminate all classes. Instead, it would offer college credits and diplomas through a subscription service similar to the online movie and television service Netflix. The caliber of the degree purchased would be tied to the subscription level. For $29.99 per month, for example, one can receive credit for a full load of coursework that is “equivalent to a Duke University or Washington University in St. Louis,” according to the university. Johns Hopkins or Wesleyan-level coursework costs $69.99 per month, while a Premium membership (Harvard, Princeton, or Yale) can be purchased for $99.99 monthly. There is a three-month minimum contract, which enables one to purchase a complete course; an automatic renewal system allows one to “drop out” of taking the spring semester. The university will also offer a “Basic” membership: for $9.99 a month, students can pursue coursework toward the equivalent of a philosophy degree from the Delaware College of Textiles and Mines.

The new MMMOOOOCs! would be packed with information and essentially content-free. Subscribers would receive a full set of lecture notes, digests of reading materials, complete term papers (with bibliographies), and exam keys—everything needed to pass a course with a grade of A+ or higher. All exams and essays will of course be open-book, and students are encouraged to cut and paste from lecture materials in order to save time. This greatly increases the efficiency of the learning process, university spokesmen say.

Think of education like filling a bucket, said the former Kashkow Dean of Students, Prof. Tweed Pantsuit. In conventional teaching, the faucet is an old fashioned pump handle and the bucket is full of holes. The massively online course movement is a firehose that the student can turn on and off at will, while holding the bucket herself. The result is much more water hitting the bucket in less time—and as we learned in quantum mechanics (wasn’t it?) time is money. Prof. Pantsuit said more about the bucket model, but frankly it wasn’t printable.

The streamlining of courses into “courseware” will have a big impact on the university’s bottom line, according to a Kashkow spokeman. It will enable the university to trim the faculty salary and benefits budget from $75 million to $342.50, according to official university documents we obtained. The bold new plan would reduce the current faculty of 225 full-time professors down to two part-time adjuncts: one for “arts” and one for “sciences.” The medical and engineering faculty would be spun off into for-profit companies, “Kashkow Medicine Dot Edu” and “Kashkow Engineering Dot Edu Dot Com,” respectively.

MMMOOOOCs! will “revolutionize higher education,” said to university president Dieter Geld. “By concentrating on what we do best,” said Geld, “We will be able to better serve our stakeholders.” Pressed on what it was that Kashkow did best, Geld said, “Serving our stakeholders!”

Further aiding the bottom line is the fact that Mr. Aristotle Spinoza, MA, the Professor of Arts, will be on leave next year, serving steakholders at a local “Surf-n-Turf” dining establishment. Raising profits while cutting costs is a “win-win” for education, Geld says.

Such a massive transformation of the university structure will not happen overnight, Geld noted; nor will it happen on its own. “To facilitate the reallocation of resources,” he said, “we are pleased to announce the appointment of a crack team of administrators.” Kashkow will be hiring six new deans and associate deans. Horatio S. O. B. Functionary, former Provost of Gouger Administrators’ College in Shillings-upon-Quid, U.K., will be the new Dean of Profiteering and will oversee the university’s money laundering program. Reed M. N. Weap, a freelance card sharp with over 20 years’ experience in money management, will be the new Dean of Accumulation. And John “Bud” Balls, formerly the football coach at Bigten University, will serve as Associate Dean of Associate Deans and will manage the university’s burgeoning roster of high-level administrators. (Balls will also head up the new varsity intramural sexual predator squad, The Fighting Flashers.) The Office of Public Relations will be split into three, each with its own associate dean: the Office of Stakeholder Relations, the Office of Trustee Relations, and the Office of Dean Relations. The new administrators will make an average of $550,000 per year salary, plus an average of nearly $4,000,000 per year in benefits.

When asked about the wisdom of adding high-paid staff as a cost-cutting measure, Geld replied, “It takes a crack team to bring out real educational change. When it comes to sparing expense, we spare no expense!”

 

Hilary Rose on eugenics & genetic medicine

Just saw this clip of an interview with the inveterate science critic Hilary Rose with The Guardian. She expresses beautifully and forcefully the idea I try, however awkwardly, to trace in The Science of Human Perfection and, often more humorously, here on Genotopia. She discusses how eugenics has always had a strand of preventive medicine, and how that strand runs continuously down to today’s genetic medicine. And that doesn’t make modern genetics evil. However, we have to be honest about what it is we’re up to. E.g.:

“Preventive [genetic] medicine is eugenics. Now, I’m not going to say I’m totally against eugenics. I just think we need to say what we’re doing.”

Rose is often a fairly radical critic, but this strikes me as a balanced and fair reading. I am ordering the new book Genes, Cells, and Brains, by Hilary Rose and Steven Rose. I expect to post more on it.

How good it would be to see some momentum gather for an honest, non-polemical critique of genetic biomedicine, one in which the aim was not to strap ourselves to the gears and wheels and levers of the machine* but rather to steer it in a positive direction—one that maximally benefits those it is meant to serve.

 

*paraphrase of a favorite quote from my hometown history

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