CRISPR could soon be used to edit the DNA of human embryos. With this intervention, the DNA changes are also passed on to the patient’s future biological descendants. By 2018, at least two children had been born as a result of germline editing with embryos that had been genetically modified in China. Prenatal editing involves editing the DNA of the fetus visible inside a pregnant woman’s uterus — without the intention of affecting future offspring.
Following his experiment, He was fined and sentenced to three years in prison for “illegal medical practice.” He, who is not a doctor, was released from prison in 2022 and returned to research. Following the case, China tightened its gene editing regulations, explicitly banning gene editing for reproductive purposes in humans.
Medical anthropologist and bioethicist Julia Brown believes that scientists and laypeople need to debate whether and how CRISPR should be used to edit fetal genomes. With their primary goal of advancing scientific knowledge, most scientists are not trained or motivated to think about the social implications of the technologies they develop. Even in genomic medicine, which aims to help future patients, time and funding constraints make real-time ethical oversight difficult.
In 2015, three years after scientists discovered how to permanently edit the human genome, US scientists issued a statement calling for an end to embryonic genome editing, a controversial type of gene editing in which DNA changes are also passed on to the patient’s future biological descendants. The scientists’ statement called for “open discussions of the benefits and risks” before experiments began. But those discussions never took place.
By 2018, at least two babies had been born as a result of germline editing, with embryos that had been genetically modified in China. After learning about the babies, scientists continued to debate — but mostly among themselves. Then in 2020, a report from an international panel of experts echoed the same call for public debate about whether germline editing could be ethical.
Prenatal genome editing of humans has not yet been performed, as far as official statistics are known. Prenatal genome editing is not the same as editing embryos ex vivo, as the Chinese scientist did, since prenatal editing involves editing the DNA of the fetus visible inside the womb of a pregnant woman — without the intention of affecting future offspring.
In 2022, a citizen’s jury in the UK, made up of people with genetic diseases, met and voted that editing the germline of human embryos could be ethical – as long as certain conditions were met, such as transparency and equal access.
Recently, in the US, the National Council on Disability published a report on their concerns about fetal and prenatal editing. Their main concern was the potential for increased discrimination against people with disabilities.
Some people consider preventing the birth of people with certain genetic traits to be a form of eugenics, the disturbing practice of treating the genetic traits of a social group as undesirable and attempting to remove them from the human gene pool. But genetic traits are often tied to a person’s social identity—treating certain traits as undesirable in the human gene pool can be deeply discriminatory.
Losing a child to a serious genetic disorder causes deep suffering for families. But the same genes that cause disease can also create human identity and community. As the National Council on Disability noted in its report, people with disabilities can have a good quality of life if they are provided with sufficient social support.
It is not easy to engage non-scientists in discussions about genetics. And people have different values, which means that public discussions that work in one context may not work in another.
Prenatal human genome editing, also known as fetal genomic surgery, offers the opportunity to alter cellular processes of disease early on, perhaps even preventing symptoms from occurring. Treatment delivery may be more direct and effective than what is possible after birth. For example, gene therapy delivered to the fetal brain could affect the entire central nervous system.
However, editing a fetus necessarily involves the pregnant woman. In the 1980s, scientists succeeded in performing surgery on a fetus for the first time. This defined the fetus as a patient and a direct recipient of medical care.
Treating the fetus as a separate patient oversimplifies the mother-fetus relationship. It has historically diminished the interests of the pregnant woman. And because fetal genome editing can harm the expectant parent or require abortion, any discussion of prenatal genetic interventions also becomes a discussion of abortion access.
Fetal gene editing is not just about editing the fetus and preventing genetic diseases. Prenatal genome editing is part of a broader spectrum of human genome editing that extends from the germline, where changes are inherited, to somatic cells, where the patient’s offspring will not inherit the changes. Prenatal genome editing is, in theory, somatic cell editing.
There is still a small potential for accidental germline editing. “Editing” the genome can be a misleading metaphor. When it was first developed, gene editing was less about cutting and pasting genes than about sending out a drone that might hit or miss its target, a stretch of DNA. It can change the genome intentionally, and sometimes unintentionally. As technology advances, gene editing is becoming less like a drone and more like a surgical incision.
Another important ethical question concerns who gets access to these technologies. To distribute prenatal genomic therapies fairly, technology developers and health systems will have to address both cost and trust issues.
Take, for example, new genetic engineering techniques for children with sickle cell disease. The disease disproportionately affects black families, who continue to face significant inequities and barriers in accessing both prenatal care and general health care.
Editing a fetus instead of a child or adult could potentially reduce healthcare costs. Because the fetus is smaller, doctors would use less gene editing materials, with lower production costs. Moreover, treating the disease early could reduce the costs a patient might accrue over their lifetime.
However, all gene editing procedures are expensive. Treating a 12-year-old child with sickle cell disease with gene editing currently costs $3.1 million. Although some scientists want to make gene editing more accessible, little progress has been made so far.
Dr. Neil Baer discusses a new book about the incredible promise and potential dangers of CRISPR gene editing technology. Since CRISPR was first conceived as a gene editing tool in 2012, scientists have seen its enormous potential.
It promises to revolutionize the treatment of genetic diseases. It is used to genetically engineer pig organs for transplant operations and to develop new antibacterial treatments. It is used to breed crops and livestock, as well as modified mosquitoes that prevent the spread of disease.
But CRISPR also has a dark side: it could become a tool for eugenics.
The ability to easily edit genes could theoretically reduce human diversity by classifying some traits as acceptable and others as unhealthy or “unfit.”
“That’s where I started to worry — who’s going to decide what gets passed on and what doesn’t?” Baer told Live Science. That question is the subject of a new book featuring essays from bioethicists, scientists, philosophers, and activists. Live Science spoke with Baer about the text and the many ethical dilemmas raised by CRISPR technology.
Dr. Neil Baer: As CRISPR was being developed, I saw that there was potential for some really amazing advances, particularly in, for example, sickle cell disease, which we all know from reading the headlines that CRISPR can be used to cure by turning on the fetal hemoglobin gene. So I started reading more and more about CRISPR and talking to people who were doing it. And I saw that the attitude toward CRISPR had changed from about 2015 to now, and that change was around editing germ cells.
The “promise” is the great things that could come out of this in terms of actually eradicating terrible diseases. The “danger” is how far we will go in potentially changing human evolution.
“We scientists have to self-regulate. I’ve heard it from very famous people who do CRISPR, that the people involved will ostracize those who don’t follow the rules. But look, Dr. He (Jiankui, the scientist who created the CRISPR babies) did it. And Ben Hurlbut in his article talks about geneticists and scientists from a famous university who encouraged Dr. He to do this work because they knew they couldn’t do it. It’s illegal in the United States.
But we’re talking about people who are very pro-germline editing, like George Church, the famous Harvard geneticist, who says, “Look, it’s going to be cheaper in the long run to just get rid of these diseases, so why bother with somatics – let’s just edit them.”
Then we get an article by Rosemary Garland-Thomson about who decides which genetic syndromes should be eliminated and which should not. We get the case of Down syndrome… should we eliminate these genetic syndromes that are compatible with life?
I don’t know anyone who would say they want to have a child with Tay-Sachs when they know for sure that their child will die before age 5. But life isn’t that simple in black and white. There are many syndromes that people live with and they have very full, rich lives, and who are we to say that they shouldn’t exist?
Dual-use technology is fundamental to understanding not only CRISPR, but also artificial intelligence and many other technologies in this field, especially ideas for improving the human body.”
“Improving” future generations with CRISPR is a path to a “new eugenics,” says ethicist Rosemary Garland-Thomson. “Eugenics seeks improvement by eliminating characteristics that are considered disadvantages in a given time and place and maximizing those that are considered normal.”
The gene-editing tool CRISPR has created a groundbreaking treatment for sickle cell disease, and in the future, scientists expect it to be used to combat cancer, forms of hereditary blindness, various superbug infections, and even HIV. These applications of CRISPR are fairly uncontroversial — but in the background, ethicists worry that the tool could be used to edit other, non-pathological traits in humanity that are considered “abnormal” or “unacceptable.”
In the following excerpt from the book, Rosemary Garland-Thomson, a bioethicist, author, and thought leader in the field of disability justice, discusses the dangers of using CRISPR to implement what she calls “velvet eugenics.” The excerpt is part of an essay featured in the new book, The Promise and Peril of CRISPR (2024, Johns Hopkins University Press), edited by Dr. Neil Baer.
What does this reflection on eugenic science and its medical practices have to do with CRISPR, the newest and most promising tool in the suite of medical technologies that our rapidly evolving system of research, development, and commerce has provided us with? Much of the public and professional conversation about CRISPR focuses on explaining how it works, discussing its safety, assessing its potential benefits, considering its purposes, or warning about its unintended consequences. My concern is not with the technology’s efficacy or ingenuity, but rather with the epistemological questions that the existence of CRISPR technology suggests the limits of human existence—and what that means for my friend who might someday alter an embryo to match what is considered a healthy child.
I have invoked the history of modern eugenics to support the position in the public and academic debate that many modern reproductive technologies, including gene editing, perform a new eugenics in the name of health and reproductive freedom. The other side of the debate supports the free development and use of these reproductive technologies, often reinforced by commercial interests. An ethic based on the interests of freedom strongly supports the growth of this laissez-faire medicine in the current moment, when the public sector or public good enterprises and private commercial interests are increasingly intertwined. The commercial logic of free choice enters the obstetric medical environment not only in support of reproductive freedom, but also in the name of parental and medical obligation to fulfill the best interests of unborn children. For example, a fetus diagnosed with spina bifida through reproductive technology could potentially receive intrauterine surgical treatment or be aborted, depending on the mother’s exercise of her medical autonomy within the framework of state law and local medical protocol. The burden of such a choice falls heavily on the mother, who tries to weigh the harms and benefits of her parental responsibility to give her child a good life. Many of these stories find their way into the public discourse in the form of books and articles about the complex web of pain and joy, and pain and reward, that comes with raising a child with an unexpected illness or disability. The option to operate on the fetus is a choice the mother can make, but her choice is influenced by opposing societal views about the future health of the fetus and the mother’s reproductive freedom.
The ethical issues raised by the new eugenics today concern the dynamics between correction, restoration, enhancement, and elimination as approaches to the development and use of medical technologies such as CRISPR. If the broadest ethical goal of any medical technology is to improve human lives, we must distinguish some of the aspirations of eugenics from the enterprise of gene technology and other medical interventions aimed at bringing all humans to a standard, “normal” form and function. Characteristics that deviate from this standard in ways we understand as disadvantages are human variations that we consider diseases. Characteristics that we understand as advantages that deviate from this standard are often sought after as enhancements. Eugenics seeks enhancement by eliminating characteristics that are considered disadvantages in a given time and place and by maximizing those considered normal. The preconditions for enhancement amplify the advantages of the norm, creating forms of superadvantage. Genetic manipulation offers the tantalizing possibility of improving society and individuals by bringing the abnormal to the normal and elevating the advantage of the normal to the enhanced advantage of the imagined supernormal. This mechanical understanding of humans as a compilation of individual characteristics that can be added or subtracted through medical intervention reduces us to the sum of our genetic profiles. Since the characteristics of the body and mind that we consider diseases or disadvantages are always parts of the whole living person, their excision or addition of supposedly better features—to use the editing and excision metaphors used to understand and explain CRISPR—promotes a crude understanding of human embodiment. The application of eugenic thinking in the early decades of the twentieth century ended because it failed to recognize that humans cannot simply be improved by erasing certain characteristics, considered disadvantages, from whole human beings embedded in lives and worlds.
A collective warning against enthusiasm for this simplistic understanding of human enhancement comes from historians such as Daniel Kevles, bioethicists such as Nathaniel Comfort, Nicholas Agar, Inmaculada de Melo-Martin, and Françoise Baylis, political theorists such as Michael Sandel, and philosophers such as Jürgen Habermas, all of whom oppose the liberal eugenics that gene editing seeks to achieve. These thinkers believe that genetic manipulation to enhance or improve future individuals or communities creates morally unacceptable consequences, ranging from causing medical harm to overriding consent, reinforcing genetic discrimination, increasing social inequality, encouraging conditional parental acceptance, turning people into products, furthering the for-profit medical-industrial complex, and encouraging fraudulent scientific and medical practices. Many who oppose gene editing understand it as scientific paternalism and a resource grab that undermines funding for other initiatives that support the public good. Habermas is a strong advocate for all of them, concluding that genetic editing is “liberal eugenics, regulated by supply and demand.”
The development of commercialized medical technologies in the interests of this liberal eugenics is producing a culture of what de Melo-Martin calls reprogenetics, which standardizes human variation in the interests of individual, market-based freedom at the expense of social justice and the robust diversity and inclusion on which modern egalitarian social orders depend. This development and use of technology goes beyond genetic editing to encompass a range of reproductive testing and selection techniques that implement what I call velvet eugenics. Velvet eugenics traces its roots to the Velvet Revolution of 1989, which toppled many communist republics in Central and Eastern Europe without overt violence. Velvet as a metaphor suggests the implementation of smooth change using only the best, commercially available product for the well-heeled consumer. This modern laissez-faire attitude, which seeks what is understood to be best by a person in a given time and place, drives much of the market for healthy conceptions, pregnancies, and curated offspring that are grown by commercial genetic testing companies.
While acknowledging the eugenic work of medical science in the modern era, these historians, bioethicists, and philosophers offer a collective warning that recognizes the limits of the human ability to control the future through actions in the present, no matter how well intended, carefully considered, morally justified, or strictly controlled.
In contrast to these existential realists are techno-optimists, who cling to the belief that the technologies developed and used by medical science can control outcomes that will benefit both future individuals and human societies. Optimistic futuristic aspirations, such as the elimination of all human disease, enthusiastically espoused by psychologist Steven Pinker, or the creation of a future population composed of what philosophers Julian Savulescu and Guy Kahane call “better ones,” ignore or even reject both the unfair uses of these eugenic technologies and their unintended consequences. Such faith in what the twentieth century called progress flies in the face of what the twenty-first century knows about the collateral damage that flows from innovations ranging from nuclear power to gasoline engines to the ubiquity of plastics, sugary drinks, and opioid painkillers—all aimed at creating a better future for everyone. Just as in the past we collectively failed to foresee the future harm of what we considered progressive advantages, many proponents of gene manipulation technologies today refuse to consider the complexities of how and whom these technologies might harm.
