Monthly Archives: August 2013

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.

Does individuality save eugenics?


(Reprinted, with minor revisions, from “Is individuality the savior of eugenics?” at Scientific American blogs)

Is eugenics a historical evil poised for a comeback? Or is it a noble but oft-abused concept, finally being done correctly?

Once defined as “the science of human improvement through better breeding,” eugenics has roared back into the headlines in recent weeks as both Mr. Hyde and Dr. Jekyll. The close observer may well wonder which persona will prevail. The snarling Mr. Hyde is the state control over reproduction. Although this idea may evoke visions of Nazi genocide, the U.S. itself has a long, unsavory eugenic history, stretching through much of the 20th century. And now it extends into the 21st: the recent investigation by the Center for Investigative Reporting, which showed that between 2006 and 2010 nearly 150 pregnant prisoners had been sterilized against their will in California, was a stunning reminder that traces of the old eugenics remain in our current century. Another recent story—a polemical but informative three-part series on the continued efforts of Project Prevention, a private effort begun in 1997 that pays poor and drug-addicted women to be sterilized—highlights some of the complexities of reproductive rights. Payment of the poor or incarcerated has long been acknowledged as a form of coercion; yet some such women genuinely welcome the opportunity not to bear more children they cannot afford without curtailing their sex lives. Sorting out these issues has been a problem at least since North Carolina’s eugenics program, begun in the 1940s, which sterilized thousands through the 1950s and 1960s, with the express approval of the state. A dabbing of eyes and collective sigh of closure accompanied the news this month that the North Carolina legislature will pay a total of $10 million to the program’s victims, or, as they were known at the time, patients.

Charles Davenport (from University of Missouri Library)

Eugenics critics are still the vocal majority, spanning the political spectrum. But in recent years, a growing constituency of Drs. Jekyll within the biomedical community has sought to resurrect eugenics as something that, if done correctly, can bring about marvelous benefits for humankind. The key to the new eugenics, they say, is individuality—a word with complex resonances ranging from “individualized medicine” to individualism, a cherished American value. Indeed, the new eugenics is sometimes called “individual” eugenics. A recent article by Jon Entine, of the Center for Genetic Literacy at George Mason University, exemplified this push for eugenicists to come back out of the night. Prenatal genetic diagnosis is eugenics, Entine says—“and that’s okay,” because it is controlled by individuals, not governments. This sparked a lively debate on both his blog and mine. To those following the discussion this summer, individuality seems to be fighting for the soul of eugenics.

*

Individuality is one of the oldest and newest terms in medicine. The Hippocratic physicians acknowledged that each patient was a unique, individual constellation of heredity, environment, and experience (although individualized treatment was, as today, reserved for those who could afford it). In the second century A.D., Rufus of Ephesus stressed the importance of interrogating the patient as to habits, preferences, experiences, and congenital diseases as an aid to diagnosis. The development of the case-study method in the Early Modern period signaled new attention being focused on the individual; each case came to be understood as a unique manifestation of disease. Yet one of the greatest transformations in medicine—the 19th century concept of specific disease, caused by a specific disease agent such as the cholera vibrio or the tubercle bacillus—shifted the physician’s gaze from the patient to the disease. Although this development led to enormous gains in the potency of medical therapy, some have rued the disappearance of the “sick man.” The current fad for “individualized” or “personalized” medicine is, among other things, the latest call for a return to patient-centered medicine. Increasingly, the physician interrogates the patient’s genome, learning far more from the sub-microscopic ticker-tape of DNA in her cells than Rufus’s wildest dreams could conjure.

But some question whether this new technology really puts the person back into medicine. Critics point out that personalized medicine often seems to concern profit more than health. Indeed, tech business sites show that personalized medicine is one of the healthcare industry’s biggest growth areas. Cui bono? Here is where individuality meets individualism—the libertarian swing that has captured much of American culture in recent decades. Events as disparate as the stock-market bubble, gay marriage, legalization of marijuana, and “right-to-carry” laws illustrate the resurgence of this quintessential American value. Individualism, of course, runs deep in the American identity, but not since the Gilded Age have the individualist mythos and free-market economics enjoyed such dominance. Indeed, the main arguments in domestic politics today seem to concern how and how fast to cut costs and disempower the government. Individualized medicine can be seen as individualist as well: many advocates stress that the new medicine must be “participatory,” meaning that the patient has increased responsibility for their own care. Modern individualism means everyone looks out for their own interests—from biotech CEOs to hospitals to patients.

*

The old eugenics was top-down and collectivist. Francis Galton proposed eugenics in Victorian England, as a humane alternative to the ruggedly individualist but misleadingly named social Darwinism. (More accurate though less sonorous would have been “social Spencerism,” after Herbert Spencer.) Rather than letting the weak kill off themselves and each other, Galton proposed a system of tax incentives and education programs he thought would lead the poor, sick, and stupid to voluntarily have fewer children—and the healthy, wealthy, and wise to voluntarily breed like rabbits. Human evolution could thus be gently directed toward perfection with much less suffering. Galton counted on evolution’s losers to unselect themselves, for the greater good.

After 1900, eugenics became yet more collectivist and much more potent, particularly in Progressive-era America. Progressivism was, fundamentally, a reaction to the exploitative practices of what Mark Twain called the “Gilded Age”—the industrial boom of the 19th century. Americans were fed up with the selfish greed and worker exploitation of Andrew Carnegie (an avid social Spencerist), Cornelius Vanderbilt, JP Morgan, and the other “Robber Barons.” (The fact that the history of American industrialism is more complicated than this doesn’t alter the mythos that motivated people at the time.) Progressives counted on Government as the only social entity powerful enough to stand up to industry, but even many who did not identify with the Progressive Party valued personal sacrifice for the greater good. The first part of the twentieth century was, by American standards, a moment of profound shift toward collectivism. However, progressivism was also about science. The rediscovery of Mendel’s principles in 1900 seemed to do for heredity what Marie Curie’s radium and Rutherford’s splitting of the atom did for physics: crack open the secrets of nature, providing hitherto unknown power to harness natural forces for the good of humanity.

The combination of collectivism and science could be deadly. Progressive-era eugenics grew highly coercive and—as politics always does—reflected the prejudices of the day. State after state passed laws that prevented miscegenation, restricted marriage, and permitted sterilization without consent for people with “defects” ranging from epilepsy to mild mental retardation to tuberculosis. Congress heard testimony from arch-eugenicist Harry Laughlin before passing the restrictive 1924 Johnson Immigration Act, and, to his great pride, Laughlin’s “Model Sterilization Law” served as the basis of the Nazi eugenic law of 1933. Thirty-five states ultimately had sterilization laws on the books. Contrary to widespread belief, the Second World War did not crush the eugenic spirit, though it did modulate it. Eugenics became increasingly medicalized. For example, the North Carolina eugenics program was run by credentialed, even distinguished physicians and scientists. Although coerced sterilizations dropped sharply during the Cold War, many of the laws remained on the books into the 1970s.

Not entirely coincidentally, about that time, “eugenics” became a dirty word. Even through the 1960s, it was possible for respected scientists to write that eugenics had a “sound core,” despite having been abused by the Germans. The conscious betterment of our gene pool, the self-direction of human evolution, had been a goal of human genetics throughout the field’s history. But by the 1980s, explicit discussion of eugenics had become Verboten, and even eugenics critics tended to think that the term had simply become too loaded to be productive. Calling someone a eugenicist was tantamount to calling him a Nazi.

It is fascinating, then, to watch a small but growing contingent within the scientific community begin to use “eugenics” again voluntarily, even proudly. In recent years, authors such as DJ Galton, Nicholas Agar, John Harris, Matt Ridley, Julian Savulescu, and others have argued that it is time to reopen a discussion of eugenics. Like the original Galtonian eugenics, this new eugenics was voluntary and aspirational, but it traded collectivist altruism for personal choice. Some of the new eugenicists were coy about the term: “In point of fact, we practise eugenics when we screen for Down’s syndrome, and other chromosomal or genetic abnormalities,” said Savulescu in a 2005 interview. “The reason we don’t define that sort of thing as ‘eugenics’, as the Nazis did, is because it’s based on choice. It’s about enhancing people’s freedom rather than reducing it.” However, others called a spade a spade. Agar, for example, used a similar argument about choice—“prospective parents should empowered to use available technologies to choose some of their children’s characteristics”—but titled his 1998 book Liberal Eugenics.[1]

*

Modern medicine, yielding to the demands of real progress, is becoming less a curative and more a preventive science. From an art of curing illness, it is becoming a science of health. It is safe to predict, I believe, that…medical men generally will be more of the order of guardians of the public health than doctors of private diseases.[2]

Though they could stand as an epigram for genomic individualized medicine, those words were written one hundred and one years ago, in an article called “Eugenics and the medical curriculum,” by Harvey Ernest Jordan, later the Dean of Medicine at the University of Virginia. His next sentence, however, gives away that he is writing in 1910, not 2010: “This represents the medical aspect of the general change from individualism to collectivism.” To adapt Jordan’s quote to our century, we’d only need to reverse those last three words. Collectivism is now anathema. 

From davidkretzmann.com

Today’s nouveau eugenicists argue explicitly that the general change back to individualism is what defangs the new eugenics. In Cold Spring Harbor’s 2008 reissue of Charles Davenport’s big book, 1910’s Heredity and Eugenics, Matt Ridley writes,

There is every difference in the world between the goal of individual eugenics and Davenport’s goal. One aims for individual happiness with no thought to the future of the human race; the other aims to improve the race at the expense of individual happiness.[3]

First, that remark is disingenuous. “Control and nothing else is the aim of biology,” wrote Jacques Loeb in 1905.[4] Efforts such as the J. Craig Venter Institute’s efforts to engineer life “from scratch” or the “BioBricks” project—an open-source genetic engineering project, like SourceForge for wetware—make clear that designing living things from the DNA up is a conscious and widespread goal. It cannot but merge with medicine eventually. Further, concern for individual happiness has never been mutually exclusive of concern for the race. In 1912, Charles Davenport recognized this in 1912 when he wrote that physicians have an obligation to practice eugenics, for the individual, for the family, for the community, and for the race. Concern for your individual child is concern for a member of your family lineage. Savulescu’s principle of procreative beneficence—that one has a moral obligation to bring the best children possible into the world—grades into the view that we have such an obligation, collectively. Individual eugenics, in other words, becomes a species of collective eugenics.

Second, is giving no thought to our future truly anodyne against disaster? If collectivism carries the risks of the slavish embrace of ideology and the concentration of power, individualism carries the risks of selfishness and lack of foresight. Consider other individualistic approaches to technology—to name but one example, the impact of technology on our climate. Aiming for individual happiness with no thought to the future of the human race has led to countless inventions that provide individual happiness for millions of people every day: air conditioning, automobiles, smartphones, cheap food, global travel, and much more. However, all these devices and industries contribute massively to climate change. We have understood the climatic effects of anthropogenic CO2 for decades, but individual happiness (including not least that of the corporate CEOs) has trumped any thought for the future. We have, in short, altered an enormously complex system without meaning to, and the results, according to scientific consensus, may be catastrophic.

Our genome creates a climate within our body. Recent findings make clear that it is a dynamic, complex system—a “sensitive organ of the cell,” as Barbara McClintock wrote presciently in 1984. Under this view, Progressive-era marriage and sterilization laws regulated whole bodies and their relations, while modern genomics regulates single genes and their relations. Bringing the decision within the body’s boundaries makes individual choice possible. But it also disrupts a complex genetic ecosystem, which any scientist will admit we know almost nothing about. Our knowledge of this ecosystem is changing incredibly rapidly; it is certain that in 20 years, today’s knowledge will seem almost incomprehensibly primitive. Almost inevitably, then, altering individual components of the system in isolation will have unforeseeable consequences. Dog breeders, exercising individual choice, produced modern Labrador Retrievers, a breed blessed with qualities of temperament, strength, and beauty, but plagued by eye problems and a tendency to hip dysplasia. Selection at the level of individual genes is likely to increase, not decrease, such problems. Individual choice, then, is subject to pressures of fashion and the profit motive, which are no better guides to evolution than bureaucracy.

In short, as blogger Razib Khan has noted, we already live in the new age of eugenics. But we shouldn’t delude ourselves that the latest political pendulum swing immunizes us against its risks. Individualism solves the problems of collectivism in mirror image of the ways that collectivism solves those of individualism. To treat either approach as a panacea is both naive and dangerous. The sociologist Nikolas Rose argues that our health status is becoming more important than our labor in shaping our identity. Many people today may find more in common with a fellow cancer victim or celiac sufferer than with a fellow plumber or banker. Such “biological citizenship” will obviously be profoundly influenced by genome screening, prenatal diagnostics, and other techniques of the new eugenics. This fact should remind us that although our identity may be unique, it is never isolated. We are all individuals within a collective.

 

References

Comfort, Nathaniel. The Science of Human Perfection: How Genes Became the Heart of American Medicine. Yale University Press, 2012.

———. The Tangled Field: Barbara Mcclintock’s Search for the Patterns of Genetic Control.  Cambridge, MA: Harvard University Press, 2001.

Davenport, Charles. “Eugenics and the Physician.” New York Medical Journal June 8 (1912): 1195-99.

Jewson, N. C. “The Disappearance of the Sick-Man from Medical Cosmology, 1770-1870.” Sociology 10 (1976).

Schoen, Johanna. Choice & Coercion: Birth Control, Sterilization, and Abortion in Public Health and Welfare.  Chapel Hill: University of North Carolina Press, 2005.

Stern, Alexandra Minna. Telling Genes: The Story of Genetic Counseling in Modern America.  Baltimore, MD: Johns Hopkins University Press, 2012.

Rose, Nikolas. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton University Press, 2006.

Rufus of Ephesus. “On the Interrogation of the Patient.” In Greek Medicine, Being Extracts Illustrative of Medical Writers from Hippocrates to Galen, edited by Arthur John Brock. xii, 256 p. New York,: AMS Press, 1972.

 

Nathaniel Comfort is Associate Professor of the History of Medicine at Johns Hopkins School of Medicine. He is the author, most recently, of The Science of Human Perfection: How Genes Became the Heart of American Medicine (Yale, 2012). He also writes the blog Genotopia (http://genotopia.scienceblog.com) and can be followed on Twitter at @nccomfort.


[1] Agar, Nicholas. “Liberal Eugenics.” Public Affairs Quarterly 12, no. 2 (1998): 137-55, p. 2.

[2] Jordan, H. E. “The Place of Eugenics in the Medical Curriculum.” In Problems in Eugenics: Papers Communicated to the First International Eugenics Congress. 396-99. Adelphi, W. C.: Eugenics Education Society, 1912.

[3] Ridley, Matt. “Davenport’s Dream.” In Davenport’s Dream: 21st Century Reflections on Heredity and Eugenics. Cold Spring Harbor, N.Y.: Cold Spring Harbor Laboratory Press, 2008, ix-xi.

[4] Loeb, Jacques. Studies in General Physiology.  Chicago: University of Chicago Press, 1905, ix.

 

DNA Ink

We’ve been pretty serious for a while, which always makes me a little edgy. And “tattoos” or some version thereof continues to be one of the biggest search terms for this blog. So, to raise the font size of “tattoos” in the tag cloud, I’ve put together a gallery of eye candy.

In their 1994 book, The DNA Mystique, Susan Lindee and Dorothy Nelkin write that “habitual images and familiar metaphors…provide the cultural forms that make ideas communicable.” The double helix is the scientific icon of our age—much like the Bohr atom was during the Cold War. Putting it on your body identifies you with science, with biotechnology, with life. It is also just a stone beautiful image, which works in a line, say down your spine, wrapped around a biceps or ankle, or curving sinuously just about anywhere. The best collection of science-themed tattoos of course is Carl Zimmer’s “Science Tattoo Emporium.” Many of these were borrowed from his archive, so a big hat-tip (tat-hip?) to him. I have the hardcover version Science Ink prominently displayed on my coffee table. Others drawn from elsewhere around the web. Click the picture to open the original url.

tree-dna

A DNA riff on the Darwinian image of the “tree of life.” But it of course also reminds me of the eugenics tree…

eugenics-tree

Foot tattoos are hard. Here's a cute rendition of unwinding DNA that flows nicely with the anatomy.

Foot tattoos are hard. Here’s a cute rendition of unwinding DNA that flows nicely with the anatomy.

Not the best execution of the image (no major and minor grooves), but a neat black-light effect that reminds me of fluorescent labeling.

Not the best execution of the image (no major and minor grooves), but a neat black-light effect that reminds me of fluorescent labeling.

Just. Wow.

Just. Wow.

All right, I admit I'm wondering whether this represents bacterial DNA (and is therefore circular).

All right, I admit I’m wondering whether this represents bacterial DNA (and is therefore circular).

An interesting “biomechanical” visual effect.

Here artist Jason Stomber has woven the double helix into a full sleeve.

Here artist Jason Stomber has woven the double helix into a full sleeve.

Clever use of the DNA icon by a pair of twin sisters. Of course, when they line them up, they become prokaryotes.

Clever use of the DNA icon by a pair of twin sisters. Of course, when they line them up, they become prokaryotes.

 

 

Alex Stern on California’s recent nonconsensual sterilizations

Just a quick note to let you know about Alexandra Minna Stern’s recent interview on Capital Radio, discussing the California sterilization case. Her work appears frequently on Genotopia—she’s one of the smartest historians discussing this important case.

 

Is There Any Malevolence to Procreative Beneficence?

John Belmont has asked a question that deserves a separate post. This is necessarily brief and should not be mistaken for a general survey of this concept, but the concept is so general that it deserves a somewhat fuller answer than I can (or should) give in the comments. Here is John’s question:

Can you discuss Savelescu’s Procreative Beneficence in the context of these new genetic screening technologies? (Screening that then often triggers definitive diagnostic testing)
It seems normal for parents to desire healthy offspring. Is it evil or morally suspect for a couple to choose healthy offspring?

In 2001, Julian Savulescu advanced a principle he calls “procreative beneficence,” which states that “couples (or single reproducers) should select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information.” It is of that species of ethical principles called “intuitive”: on the face of it, who could argue on behalf of not providing the best possible conditions for one’s child, whether they be environmental or genetic? So no, of course it’s not evil to choose healthy offspring, so long as one is morally okay with disposing of “unfit” embryos or young fetuses. But its morality is less straightforward.

Savulescu’s idea has spawned a sizable secondary literature, especially among bioethicists, most of whom have tried various tacks to destroy his principle. A full discussion and evaluation of this literature is more than I can undertake here, but i’ll provide a starter bibliography at the bottom.

Few–including Savulescu himself–deny that PB is an element of the “new eugenics.” By this is meant an “individualized” or “liberalized” (or even “commercialized”) eugenics, rather than a state-controlled eugenics. This distinction is entirely appropriate. State-controlled eugenics is part of a specific historical context, whereas I see eugenics as a trans-historical principle (what I have more colloquially called an “impulse”). The eugenic impulse goes beyond notions of “old” or “new” eugenics: eugenics is just there, manifesting in different ways in different periods. Empirically, we appear to be driven to take control of our own evolution.

On the surface, Savulescu’s principle, like arguments in favor of “new” eugenics generally, appears not to be concerned with control over human evolution. It refers only to choices about specific individuals—a couple’s (or individual’s) choices about the genome of an embryo or fetus, it doesn’t concern the well-being of the population. However, <a href=”http://www.ncbi.nlm.nih.gov/pubmed/20047587″ target=”_blank”>Elster</a> shows that procreative beneficence is impossible to fully separate from “General Procreative Beneficence”–the idea that “couples ought to select children in view of maximizing the overall expected value in the world, not just the welfare of their future child.” Most literature advocating the new eugenics treats the individual and the population as wholly distinct, yet of course what is a population but a collection of individuals? These two principles–concern for the individual and concern for the population– are by no means mutually exclusive; indeed, the thrust of my book is that they have always coexisted. It’s naive (or cynical) to act as though one can be separated from the other.

Under this view, PB is in fact an indirect means of directing the evolution of the population. My position is that state control is not what makes a practice eugenic. What makes a reproductive practice eugenic is whether it includes a decision about the welfare of the population; whether it is subject to social (including economic) pressures. If one is “merely” choosing the “best” possible child, few of us have the luxury of ignoring racial features, for example. The “best” child is the best in a particular or anticipated environment. The literature on PB that I have read does not take this fully into account.

If the “best” environment is truly adapting, shifting, and local, then we have Darwinian conditions, in which the population is “evolving itself” with no particular end. This is morally less troubling than a Spencerian goal-directedness. I make no claim to being a moral philosopher, but as a historian, it seems morally less responsible to deny parents that freedom than to allow it. In sum, I am not persuaded by moral arguments against PB.

But I have rational arguments against it. They are two: What if it doesn’t work?; and What if it does?

What if it doesn’t work? We can tinker with genomes long before we understand them, the way one can learn a few Unix commands without fully comprehending the operating system. I worry we will make bad choices. I worry we will uncouple biological systems that have evolved together for millennia. I worry that our technology outstrips our wisdom.

What if it does? I worry that corporate control–via market pressures, advertising, and so forth–may prove even more potent than government control. I worry that PB will instantiate in our very DNA ideas of normalcy that may transcend local conditions and become general principles of human perfection. I worry that it will encourage the idea that genes are all; that we can simply “dial in” the child we want; that we will rob poorly funded social programs to pay for already amply funded research programs for the elite. Historical examples do not provide a comforting set of models for human behavior in these areas.

In short, then, it may not be “evil” to choose the genetic constitution of a child, but in doing so we are making many more choices than we are aware of.

 

Some references on procreative beneficence:

Savulescu, J. “Procreative Beneficence: Why We Should Select the Best Children.” Bioethics 15, no. 5-6 (Oct 2001): 413-26.
Savulescu, J. “In Defence of Procreative Beneficence.” J Med Ethics 33, no. 5 (May 2007): 284-8. doi:10.1136/jme.2006.018184.
Savulescu, J., and G. Kahane. “The Moral Obligation to Create Children with the Best Chance of the Best Life.” Bioethics 23 (Jun 2009): 274-90. doi:10.1111/j.1467-8519.2008.00687.x.

Herissone-Kelly, P. “Procreative Beneficence and the Prospective Parent.” J Med Ethics 32, no. 3 (Mar 2006): 166-9. doi:10.1136/jme.2005.012369.
Bennett, R. “The Fallacy of the Principle of Procreative Beneficence.” Bioethics 23, no. 5 (Jun 2009): 265-73. doi:10.1111/j.1467-8519.2008.00655.x.
Elster, J. “Procreative Beneficence: Cui Bono?”. Bioethics 25, no. 9 (Nov 2011): 482-8. doi:10.1111/j.1467-8519.2009.01794.x.
Herissone-Kelly, P. “Reasons, Rationalities, and Procreative Beneficence: Need Hayry Stand Politely by While Savulescu and Herissone-Kelly Disagree?”. Camb Q Healthc Ethics 20, no. 2 (Apr 2011): 258-67. doi:10.1017/S0963180110000903.
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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.