Gregor Wolbring is critical of entrepreneurs and scientists who champion gene therapies as miracle cures or transformative tools of human enhancement.
If everyone uses these tools to achieve the same unimaginative dreams—to grow big muscles or have blue eyes—then, Wolbring says, humanity will be stripped of character and biological diversity.
Wolbring, a biochemist who gets around in a wheelchair, is concerned that CRISPR, a molecular tool that can be used to manipulate DNA in embryos and adults, will be used to edit people like him out of existence. “You can understand people like me as part of human variation,” he says. “Or you can see us as being impaired and eliminate us from the population.”
Wolbring is one of the approximately 12,000 babies born with body differences after their mothers took a drug called thalidomide. In 1957, a German company, Chemie Grüenthal developed and marketed thalidomide to treat nausea and morning sickness in pregnant women. Slowly the medical community began to notice problems. One boy was born without ears in Germany followed by a girl whose hands and feet were attached directly to her body, a condition called tetra-phocomelia (literally, “four seal’s limbs”).
Rather than just point the finger at Chemie Grüenthal, Wolbring is critical of social attitudes that result in ongoing discrimination. It would be too easy to blame corporations for contemporary problems related to biotechnology and medicine. “Industry caters to the values of consumers,” he says. The mistakes of Chemie Grüenthal happened over 50 years ago, but people in his community still experience bullying and prejudice today. Bias frames everyday encounters. Social attitudes continue to have significant negative impacts on quality of life and well-being of people with different kinds of bodies.
“CRISPR-Cas9 is nothing new,” Wolbring says. When geneticists started celebrating this wonderful new tool for molecular biology, he says, “every biochemist was mostly just eye-rolling.”
Scientists are only starting to understand how genes fit within complex biochemical interactions in living cells. Before rushing ahead with new tools, biologists should learn from the recent past. Modern chemistry has already produced profound changes to humanity. Mistakes were made that have left a lasting impact on human bodies and the environment. The biologists who are celebrating the power of CRISPR could be dangerous in their naïveté if new precautionary laws aren’t passed. Wolbring asks, “Will society be able to live with their mistakes?”
Wolbring argues that “normal” human bodies and minds have already been transformed by a wide range of chemical, robotic, and digital enhancements. He insists that it is impossible to draw a clear line distinguishing medical use of technology from uses for human enhancement. Genetic engineering technologies could further transform our sense of what it means to be normal. Enhancements targeting human DNA could shift the baseline over expectations about species-typical abilities.
“We expect certain abilities in members of a species,” Wolbring writes. “We expect humans to walk but not to fly, but a bird we expect to fly.” But doctors are already offering people the opportunity to go “beyond species typical bodies, to enhance themselves as they seek treatment for disability” [1].
Differently abled people are often seen as having sub-species-typical abilities, and can face intense pressure to bring themselves up to the norm. Historically, many deaf people have resisted this pressure, insisting that they are members of a subculture. Others have embraced the latest technological enhancements. “Many deaf people are now opting for cochlear implants that enable them to hear frequencies beyond the normal range of human hearing,” he says.
But enhancements can be expensive and not everyone can afford to be “liberated” from their disability, Wolbring observes. He suspects that future enhancements will further exacerbate issues of social inequality and competition.
Pointing to statistics from the US Department of Labor, he notes that roughly 80 percent of disabled people are unemployed. Dystopian movies like Gattaca, set in the near future where unenhanced people are regulated to menial jobs, depict the current reality for most people who live with mental or physical disabilities.
Wolbring uses the term “ableism” to understand how society treats disabled people. “Ableism is our obsession with certain abilities and the accompanying negative treatment of people who don't have these kinds of abilities,” he says. Ableism is defined as “discrimination in favor of able-bodied people” and also “prejudice against or with disregard of the needs of disabled people.” In some cases, this bias has produced outright violence.
Many babies who were born like Gregor Wolbring were killed when they were young. “Euthanasia was in the cards for dealing with thalidomide babies,” writes Wolbring [2]. “Some parents engaged in so-called ‘mercy killings’ by giving their child barbiturates.” Disabled children continue to be systemically eliminated from the population before birth through abortion, as parents make choices with guidance from doctors.
“The idea that eugenics could prevent suffering, save money, eradicate disease, and help us to achieve the so-called ‘perfect’ human appeared in the early sterilization articles and continues through to today,” Wolbring writes in a co-authored article [3]. He advocates for the existence of people who have different bodily abilities and cognitive capacities as a result of genetics. “The arguments supporting eugenics tend to paint a clear picture; those who fall into the ‘unfit’ group are suffering, too expensive, and ought to be ‘fixed’ or prevented.”
A classic book by the anthropologist Rayna Rapp, Testing Women, Testing the Fetus, documents how new eugenic practices emerged as amniocentesis became a standard part of clinical practice for older mothers. When amniocentesis first became available in the United States, many felt pressured into having an abortion when tests revealed that they would have a differently-abled child.
CRISPR could exacerbate trends that already are playing out in the clinic. New genetic tests for fetuses, Wolbring says, have already radically expanded the scope of consumer-driven eugenics. As applied to babies, the category of “defective” has gone beyond Down syndrome in recent years to include a host of other conditions associated with neurodiversity and even sexuality. The global prenatal testing market is expected to grow to $2.5 billion by 2025, as more women adopt non-invasive tests as a routine part of pregnancy.
If CRISPR becomes a routine part of fertility treatments, current trends could be taken to the next level. If genetic surgery procedures become cheap and widely available, he reckons, parents will be expected to eliminate genes from their children in the name of reducing costs to the healthcare system.
Right now, CRISPR is more likely to harm than help future children. As researchers sally forth to explore new experimental possibilities for humanity, it is important to remember that past scientific mistakes have produced long-lasting consequences.
This excerpt is adapted from the forthcoming book The Mutant Project: Inside the Global Race to Genetically Modify Humans, out from St. Martin’s Press on November 10.
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[1] Wolbring, Gregor et al. “Emerging Therapeutic Enhancement Enabling Health Technologies and Their Discourses.” Healthcare, vol.1, no.1, 2013, pp. 20–52.
[2] Litke, Brian and Gregor Wolbring. “Superhip to Supercrip.” The Conversation, 30 August, 2012, https://theconversation.com/superhip-to-supercrip-the-trickle-down-effect-of-the-paralympics-9009. Accessed 17 September, 2020.
[3] Ball, Natalie and Gregor Wolbring. “Portrayals of and Arguments Around Different
Eugenic Practices.” International Journal of Disability, Community, and Rehabilitation, vol.12, 2013.
Eben Kirksey is a cultural anthropologist, writer, and storyteller. He attended the University of Oxford as a British Marshall Scholar and has taught at Princeton University and Deep Springs College. Research for The Mutant Project led to an international journey where he met the key scientists, lobbyists, and entrepreneurs who are pushing CRISPR into the clinic. In mainland China he spoke with volunteers who signed up for Dr. Jiankui’s controversial experiment, and learned unreported details about the health and well-being of the twins, Lulu and Nana. Currently Kirksey is Associate Professor of Anthropology at Deakin University in Melbourne, Australia.
