A provocative, heartfelt but ultimately misguided article in the Denver Post decried “the rise of a new eugenics.” It was written by two prominent, thoughtful people, Lloyd Lewis and Julie Reiskin, officers with the Colorado Cross Disability Coalition (CCDC).
My issue is not with their stated mission to advocate for social justice for people with all types of disabilities—but with their simplistic and counterproductive demonization of DNA screening tests reflected in this opinion piece. Their premise is this: Over the past decade, technological advances have led to the development of simple and inexpensive genetic screening tests that can determine whether a fetus has a genetic disorder. If a disorder is identified—and if the laws of the state or country in which the pregnant woman resides allow—the fetus can be aborted. This is all very much like amniocentesis, which is widely embraced around the world. The CCDC focuses on fetuses with Down syndrome (DS) to argue that modern DNA screening techniques (but not amniocentesis) present a moral hazard.
Abortion is a prickly issue, contentious and personal, entangled with legal and moral standards that vary from community to community. Lewis and Reiskin advance a moral argument as a backdoor way to promote changes in the legal landscape, and I believe they do so disingenuously. If successful, their efforts would lead to curtailments in abortion rights and limit genetic health screens.
Amniocentesis, abortion, and DNA screening
Almost all communities in the United States, Europe and most other Western countries allow for the termination of pregnancies when the mother is found to be carrying a fetus with a genetic disease. The raw truth is that prospective parents would prefer having children with no genetic defects. As the Denver Post article states, 80 to 90 percent of women who receive a positive amniocentesis test for DS choose to terminate their pregnancy.
There is already broad national support for screening fetuses to determine whether they contain genetic abnormalities: amniocentesis. It involves inserting a needle through the uterus to withdraw fluid and fetal cells from the amniotic sac. Although controversial in its early days, it’s now a broadly accepted procedure that ultimately results in the termination of tens of thousands of pregnancies every year. But amniocentesis is an invasive test; some women refuse to ask for it for that reason alone.
The CCDC’s opposition to genetic screening is based on its belief that because genetic screening is a non-invasive technique (and now booming in popularity), it will result in even more terminations. “To be blunt, this test will likely result in a rapidly decreasing population of people with DS,” write Lewis and Reiskin. That’s almost certainly accurate.
It appears the CCDC is a responsible organization that promotes the rights of the disabled. They are good guys. Most of the people linked to CCDC have or are associated with children with one form of genetic disability or another, often DS. They have a compelling, deeply personal moral argument that’s not unlike the one promoted by anti-abortion groups—terminating human life in any form and at any stage of development is wrong. The CCDC however appears to take no position on abortion—which means in effect it voices no concerns about terminating healthy pregnancies—but it wants to establish unique moral and legal rights for fetuses with genetic defects.
Lewis, Reiskin, and the CCDC have the right to advance any policy position. Their engagement is part of how democratic societies have chosen to work through this moral thicket. But positions should be based on sound science and reasoning, not on appeals to emotion and hyperbole.
Playing the anti-biotechnology hysteria card
My concern is that the CCDC’s framing of the issue undermines support for genetic testing, particularly pre-conception. Lewis and Reiskin deploy the word “eugenics” as if it’s a synonym for genocide. It’s a reckless, socially fraught way to manipulate historical facts, and is an all-too-common distortion of the social history of genetics policy in the United States. They write:
“Adolf Hitler’s embrace of eugenics would discredit the movement, but unfortunately it didn’t disappear… Today, in fact, we see the rise of a new eugenics, made possible by the rapid development of bioscience and biotechnology, especially from the mapping of the human genome. This is obviously technology and philosophy that the American eugenicists in the 1920s would have embraced, along with their counterparts in Nazi Germany.”
The authors are either ignorant of history or willing to misrepresent it to promote their cause. Eugenics is typically portrayed as morally repugnant by today’s standards, but classical eugenics (meaning “good genes”) has its roots in the progressive era at the turn of the twentieth century, not in Hitler’s twisted vision of a Final Solution. The scientists who formulated these ideas were very much mainstream, and their proposition sounded reasonable to an American and European establishment trying to come to terms with waves of ill-educated immigrants from Southeastern Europe.
Scientists offered what they considered to be a progressive solution: “positive eugenics,” which focused on better pre-natal and natal and health and encouraged society’s healthiest citizens to have more children, thus improving the overall health of society. The founder of Planned Parenthood, Margaret Sanger, along with many major Protestant and Jewish clergy were eager proponents of positive eugenics. Those eugenic views remain a central tenet of modern society today.
The “negative” wing of eugenics, which was popular in the late 20s and early 30s but never widely embraced, wanted to legally prevent the mentally ill, poor, immigrants and non-whites from having children. Some Social Darwinists also propagated the belief that progress could only be attained by phasing out “undesirable genes.” Again, we practice mild versions of this today—that’s what amniocentesis accomplishes. It was only later however, that ideologues of the far right twisted eugenics to justify Nazism and genocide. Their exploitation and abuse of the concept led to the “eugenics movement,” but this movement casts a shadow over the modern focus on improving individual and societal genetic health in a non-coercive way.
Nathaniel Comfort, professor at the Institute of the History of Medicine at The Johns Hopkins University, addressed many of the complicated moral and legal issues raised by in the eugenics movement his book The Science of Human Perfection: How Genes Became the Heart of American Medicine, published last year. As Comfort argues, the impulse to use genetic screening reflects complex motivations:
“The eugenic impulse drives us to eliminate disease, to live longer and healthier, with greater intelligence and a better adjustment to the conditions of society. It arises whenever the humanitarian desire for happiness and social betterment combines with an emphasis on heredity as the essence of human nature. It is the aim of control, the denial of fatalism, the rejection of chance. The dream of engineering ourselves, of reducing suffering now and forever.”
We are in the “second age of eugenics” wrote Discover blogger Razib Khan, citing the growth in the number of terminated DS pregnancies. Because of advances in genetic screening, we are in a position to reduce the prevalence of many Mendelian diseases caused by single gene mutations (e.g. sickle-cell anemia, cystic fibrosis, PKU, Huntington’s disease). The mostly small, start-up genetics companies that Lewis and Reiskin mischaracterize as “Wall Street backed corporations” are actually marshalling their resources to educate the public on these thorny issues. For example, we are now able to identify mutation carriers before conception so diseased embryos are never conceived and abortion is never a question. And yes, that would mean fewer babies born with Down syndrome.
New eugenics, old fears
The potential power of the “new eugenics” has put both the far left and right on edge. They share a quasi-religious belief that nature and life should be considered inalterable. Pro-life groups and activist groups on the left that argue for the dignity of people with disabilities often campaign vigorously against aborting fetuses known to carry debilitating diseases.
Their case has been taken up by activist writer Alex Knapp who holds that no one is “eugenically unfit” and society has advanced too far scientifically and morally to allow such practices. He focuses solely on negative eugenics and not the positive impact that family planning and genetic screening have already had on society.
His focus on negative eugenics is rampant on the hard-edged ideological left, promoted most vociferously by the Center for Genetics and Society, which considers itself a progressive advocacy group but is actually the opposite on many genetics issues. It takes every opportunity to conflate prenatal testing and gene therapy with negative eugenics, arguing that it is socially and ethically reprehensible to alter the genes that we pass on to our children.
It’s an odd argument given that CGS supports planned parenting—which attempts to achieve the same goal as preventative screening but with far less precision and more unintended consequences. Their fear stems as much from the tool itself (biotechnology) than its intended consequences.
The limits of eugenics
Scientist and blogger Gerhard Adams, writing last year at Science 2.0, raised more sophisticated cautions about eugenics and genetic fetal screenings. The concept itself is potentially flawed, he maintains, because there is no way to determine whether what appears to be a negative mutation may confer unexpected or unknown benefits. The sickle cell mutation, for instance, protects people from contracting malaria. Eliminating the mutation entirely would put many populations at suddenly increased risk of malaria infection.
“Some may argue that we have plenty of evidence from our experiences in animal domestication,” he writes, “yet who would claim that these results are an improvement of the original species? The modifications [may] have made these animals more compliant with human demands, but improved the original species?” If given a choice, he writes, humans will converge toward genetic homogeneity—which is also bad for the species.
One key problem with Adams’s line of reasoning is that screening and abortions do not necessarily eliminate a trait—it would be very difficult to actually wipe out many genetic diseases. Eugenics-inspired screening in the Jewish community has all but ended Tay Sachs among Orthodox Jews, but the frequency of the mutation in the larger non-Jewish population has not changed. Furthermore, Down syndrome is a spontaneous, not inherited, trait—screening and abortions would have no direct impact on its prevalence.
The Gattaca argument: more “fi” than “sci”?
In the grand scheme, the biggest bugaboo haunting personal genomics is the specter of Gattaca: as more people adopt genetic screening, the choice to use it could become less voluntary—or at least harder to turn down. Science 2.0 founder and editor Hank Campbell argues that once it becomes possible to engineer “superior” qualities in human beings, then a parent’s only moral choice would be to have genetically superior children. That’s the ominous theme behind the Lewis and Reikin’s Denver Post opinion piece.
It may sound like a real argument but it’s sci-fi in the extreme. The CCDC, Knapp, CGS and Campbell may believe they are warning against Big Brother but their positions would seem to favor Big Brother-like restrictions.
Should we limit personal choice, including the right of prospective parents to terminate their pregnancies? In a post from last year about prenatal sex selection and reproductive rights, science blogger Cameron English struck a sensible balance:
“There’s no doubt that we need to consider the difficult ethical questions that arise as our ability to manipulate nature improves… But making ominous predictions and restricting personal choice shouldn’t be a part of that discussion, at least not without evidence.”
Modern eugenic aspirations are not about the draconian top-down measures promoted by the Nazis and their ilk. Instead of being driven by a desire to “improve” the species, new eugenics is driven by our personal desire to be as healthy, intelligent and fit as possible—and for the opportunity of our children to be so as well. And that’s not something that should be dismissed lightly.