Are Sperm Banks in the Business of Eugenics?
by George Dvorsky / 12/30/15
“The most prominent sperm bank in the UK is under investigation after turning away donors with dyslexia and other questionable characteristics. This raises an important question: Should sperm banks be in the business of making “better” babies? Britain’s Human Fertilisation and Embryology Authority (HFEA), which regulates sperm banks, has launched a review of the London Sperm Bank after being alerted to its practices by The Guardian. The sperm bank is the largest in the UK and is accused of engaging in eugenics by banning men with dyslexia and other common conditions it describes as “neurological diseases.” A booklet produced by the London Sperm Bank lists several questionable screening criteria, some of which may be in violation of British law and human rights standards.
A page from the London Sperm Bank pamphlet, via The Guardian
In addition to dyslexia, the booklet lists conditions such as attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), cerebral palsy, dyspraxia, multiple sclerosis, and Tourette Syndrome. It also mentions Down Syndrome, color blindness, and a family history of Type 1 diabetes. But some of the conditions listed, including cerebral palsy and dyslexia, are not linked—or are very weakly linked—to genetics. At the same time, some experts question whether or not dyslexia, which affects upwards of 10% of the population, should even be classified as a disability. Dyslexics, including prominent figures like Albert Einstein, Richard Branson, and Steve Jobs, are said to have benefited from the attendant cognitive attributes, including improved lateral thinking, spatial reasoning, and pattern recognition. (Similar concerns revolve around the appropriateness of banning donors with color blindness, which affects as many as one in 12 males.)
The London Sperm Bank, it would appear, is adhering to an ableist and neurotypical bias, which the HFEA is now scrutinizing. “The HFEA has never required or endorsed prohibiting people with dyslexia, dyspraxia, ADD, ADHD and other disorders from becoming sperm donors,” noted the HFEA in a statement. “The clinic’s HFEA inspector is clarifying our requirements for selecting donors with the centre, and is reviewing all the exemptions cited in the centre’s materials, to ensure that all future donors are treated fairly and in accordance with the law.” In response, the London Sperm bank has pulled its booklet, saying it’s reviewing its practices and protocols.
United States eugenics advocacy poster, circa 1926. (Credit: Philadelphia Sesqui-Centennial Exhibition, 1926)
But Is It Eugenics?
Given the accusations levied at the London Sperm Bank, it’s fair to ask if the company is actually engaging in eugenic practices. “Sperm banks have been in the business of screening with an eye toward producing healthier or more ‘perfect’ children for decades,” said NYU Langone Medical Center bioethicist Arthur Caplan. “It’s nothing new, they’ve been doing it for a long time.” Caplan makes the distinction between hard and soft eugenics, the former being more closely associated with Nazi Germany and the killing of so-called undesirables. Soft eugenics, or what’s often referred to as positive eugenics, is the attempt to make better babies. So, in the sense that sperm banks are promoting and encouraging the idea of having babies built to order, then yes, it can be referred to as a form of positive eugenics. “In this case, customers are selecting for traits they want, and avoiding traits they don’t want,” Caplan explained to Gizmodo.
“Class on the Bertillon system in France in 1911″
Bioethicist Nigel Cameron, the president of the Center for Policy on Emerging Technologies, says the practice is absolutely eugenics— and that sperm banks are starting to take it too far. “There is something inherently eugenic about assisted reproduction unless donations are accepted, by clinics and recipients, sight unseen,” he told Gizmodo. “When we take this to the extent they have, banning the color blind, we are wading in deep.” He added, “And also, as this example shows, we are starting to be rather obviously stupid.” According to James Hughes, the executive director of the Institute for Ethics and Emerging Technology, eugenics is unfortunately a broad term. “This is certainly an attempt to help parents have genetically healthier children, but it is not a coercive state policy mandating reproductive choices based on racist and classist pseudoscience,” he said. “So some would call it eugenics, and others would not.”
“A set of photographs depicting anthropometry – the measurement of humans. Exhibit photograph scanned from: Harry H. Laughlin, The Second International Exhibition of Eugenics held September 22 to October 22, 1921, in connection with the Second International Congress of Eugenics in the American Museum of Natural History, New York”
The Narrowing of Humanity
Canadian bioethicist Kerry Bowman, who teaches at the University of Toronto, worries that this kind of screening is counterproductive, and that it’s in opposition to shifting cultural and social norms. “I would absolutely state that it’s narrowing humanity at a time when we’re starting to accept many aspects of diversity,” he told Gizmodo. “Creativity has a high association with some of the things banned by sperm banks.” Bowman says that some of our most treasured characteristics, such as innovation and creativity, are being undermined by these sorts of screening protocols. What’s more, he believes there are some definite human rights aspects to it as well. “The acceptance of broad aspects of human diversity is a great way to build healthy societies,” he said. “but we’re actually moving against that with some of these practices.”
“Class on the Bertillon system in France in 1911. Bertillonage exhibited certain defects and was gradually supplanted by the system of finger prints and, latterly, genetics.”
Wild West of Assisted Reproduction
Sperm banks are in the business of making money, so they’re doing their best to attract customers. If their marketing materials fail to impress prospective parents, or if they’re not screening for the “right” attributes, customers will take their business elsewhere. Trouble is, we’re currently living in the Wild West era of assisted reproduction, and sperm banks may be starting to abuse the lack of oversight. According to Caplan, sperm banks, as well as egg sellers and donors, essentially function in the US with almost no regulation. They’re required to look for things like transmissible diseases, such as HIV, but no one is required to check on their claims, or prove that the people used in their marketing materials are even representative of the real donors. Some of these sperm banks may even be using the same donor multiple times.
“It’s certainly wrong when sperm banks promise things that can’t be delivered, or when their claims fall outside of science, like suggesting certain traits are inherited when they’re not, like cerebral palsy,” said Caplan. “Deliberately misleading people, or classifying things as disorders, such as dyslexia and Asperger’s, which can have many positive attributes, is a problem. At this point, they’re distorting and deceiving their customers. They’re basically saying that they’re going to help your offspring avoid a disease, when in fact there isn’t any medical opinion that says it’s a disease.” Cameron shares these concerns. “The top Google search for sperm clinics yields an ad from one of the oldest firms touting its use of donors from only the top schools, and telling prospective clients how much choice they will have over the details of the donor,” he said. Sperm banks are making promises to parents about their future children that can’t possibly be met.
Given that we’re talking about the free market, however, a strong case can be made that parents reserve the right to know what they’re purchasing. To that end, Caplan says that parents should be able to access the genetic profile of the sperm they’re acquiring; they are paying for a product after all. But he says this sentiment is fueling a fear that, by treating this domain like a business, it’s turning baby-making into a form of manufacturing. This could eventually lead to issues of product liability. Parents may sue a sperm facility for a product that failed to meet specifications, or worse, they may reject a child outright. “If you treat making children as a for-profit business, suddenly the legal attributes of for-profit business starts to leak into child building,” he explained to Gizmodo. So, should sperm come with genetic ‘warning labels’? “Prospective parents have a right to know as much as possible about the quality, safety and efficacy of all the genetic manipulations they choose, and as much as is knowable about any sperm or ova they choose,” said Hughes. Cameron is not quite on board with this idea. “This is not a standard consumer situation, even if a money-making clinic will tend to think it is,” he said. “We’re talking about enormous issues of human dignity that even in the UK— the most ‘liberal’ jurisdiction in the world on these issues—is recognized in law and regulatory regimes.” Cameron says that talk of a parental “right to know” smacks of capitalism and may be misleading. Like Caplan, he worries that some parents may wish to return their product if it fails to please. “Yes, all baby-making should come with warning labels,” said Cameron, “including that your happiness and the child’s—and indeed, the child’s success, which is quite different, as this example shows—are likely to be unrelated to current decisions in our power.”
Finally, it’s important to acknowledge this issue as it pertains to our reproductive autonomy. “The right to know what kind of child you are making is fundamental to the right to control our own bodies, to reproductive rights, and to the right of parents to protect their children’s health and future,” Hughes told Gizmodo. “In assisted reproduction it is also encompassed in the medical ethic of informed consent.” This incident clearly shows that oversight is desperately needed in this realm. Without tougher regulations, sperm banks will continue to overpromise and decieve their customers as a way to keep ahead of the competition. And by violating our laws and cultural norms, they’re causing us to step backwards instead of forwards.”
GERM LINE THERAPIES
Here’s Why We’ll Eventually Have to Accept Designer Babies
by George Dvorsky / 12/07/15
“Last week’s historic summit on human gene-editing has come to a close, and its organizing committee has given the go-ahead for scientists in the US to experiment on human genes — only if it doesn’t result in a pregnancy. It’s a surprisingly progressive stance. But make no mistake, human trait selection is coming. Here’s why we’ll eventually accept the prospect of genetically modified “designer babies.” The three-day International Summit on Human Gene Editing, held in Washington, D.C., brought together some of the world’s leading geneticists and bioethicists to discuss the prospect of editing the human genome.
The need for the summit arose earlier this year after scientists in China announced that they had genetically modified human embryos. Using a powerful and remarkably simple DNA cut-and-paste tool called CRISPR, the scientists modified a gene responsible for a fatal blood disorder. The resulting embryos were destroyed, but the achievement raised alarm bells among many scientists and ethicists. It was particularly significant because the scientists performed germline modifications, which means the edits would be heritable, i.e., they’d be passed down to the next generation.
Last week, the members of the organizing committee issued a statement summarizing its conclusions. They concluded it was okay for scientists to edit the genetic sequences of human cells, so long as it doesn’t result in a pregnancy. The committee’s recommendations were surprisingly reasonable—and even a bit progressive—especially considering the degree of concern expressed in previous months. Some scientists—even those who helped to develop CRISPR—went so far as to demand a moratorium on the practice. So this is good news. Science will be allowed to move forward.
At the same time, the committee made it clear that it’s not ready to accept the prospect of “designer babies.” Not only did they agree that the technology is still grossly premature (which is true), they also argued that this practice might never be accepted for technical, practical, and moral reasons. There’s no question that some of the concerns expressed by the committee are warranted, but make no mistake—human trait selection is coming. A ban on making GMO babies is wholly appropriate for the moment, but it won’t—and shouldn’t—stay that way forever.
The committee agreed that basic and preclinical research should proceed. Once the appropriate oversight is put into place, the committee saw no reason to prevent work in the following areas:
- Developing technologies for editing genetic sequences in human cells
- Identifying potential benefits and risks of proposed clinical uses
- Understanding the biology of human embryos and germline cells
The caveat: any resulting human embryos or modified cells should not be used to establish a pregnancy.
This mirrors what’s happening elsewhere. British scientists working at London’s Francis Crick Institute recently submitted a request to the U.K.’s Human Fertilisation & Embryology Authority (HEFA) to use a gene editing technique to modify human embryos. The gene editing committee also reaffirmed the practice of genetically altering somatic cells, i.e., manipulating cells whose genomes cannot be passed down to the next generation. There’s little controversy here, as most scientists recognize the relative efficacy and safety of the practice. Somatic gene editing could alleviate such conditions as cystic fibrosis, muscular dystrophy, certain cancers, sickle-cell anemia, and other genetic disorders. Unfortunately, the effects of somatic cell therapy are often short-lived, and patients require repeated treatments over the course of their lifespan to maintain the therapeutic effect. That’s why germline therapies hold so much promise.
Drawing the Line at the Germline
Human germline engineering was the committee’s biggest concern. The committee objected to the potential practice on the grounds that CRISPR and other gene-editing techniques aren’t ready for prime time. There’s still considerable risk of inaccurate DNA editing, leading to off-target mutations and the incomplete editing of cells in early-stage embryos. Until these and other scientific/technical issues are resolved, scientists have no business making genetically modified babies. As for the committee’s other objections, they’re considerably more abstract. While they agreed that gene editing could be used to eliminate inherited diseases, they warned that it could also be used to introduce novel or enhanced human capacities, such as extreme longevity, boosts to intelligence, and added physical strength. Some geneticists are worried that transhumanist-minded folks might use these biotechnologies on themselves to produce enhanced children, and thus trigger an “arms race” among parents.
The committee cited an obligation to consider broader implications, too, when it comes to heritable modifications: once introduced, it would be difficult to remove such genetic modifications from the human population as it spread through subsequent generations. There is also the “possibility that permanent genetic ‘enhancements’ to subsets of the population could exacerbate social inequities or be used coercively,” and that there are “moral and ethical considerations in purposefully altering human evolution using this technology.” These claims aren’t entirely convincing, nor do they speak to the tremendous benefits to be gained by genetic engineering. In fact, a case can be made that we’re morally obligated to develop these tools as quickly as possible.
Much to Gain
“The benefits would be huge,” said NYU Langone Medical Center bioethicist Arthur Caplan. “Just huge.” Caplan told Gizmodo that the practice would lead to dramatic cost reductions in medicine, and enable more people to marry and have children without the fear that they might pass on genetic problems. Gene editing would also enable our descendants to live healthier, longer lives. Caplan believes that human enhancement ultimately would make people “stronger, smarter, faster, saner, better rested, and more adaptable.” Bioethicist and legal expert Linda MacDonald Glenn agreed, saying that gene-editing can increase human potential and productivity, while alleviating suffering and improving the human condition as a whole. Oxford bioethicist Julian Savulescu said we should embrace gene-editing research on human embryos because it will help us cure genetic diseases, like cystic fibrosis and thalassaemia, and it will help us deal with complex diseases that can’t otherwise be tackled. Savulescu also said it will finally put an end to the so-called genetic lottery: “People worry that such technology could be used to create a master race, like fair-haired, blue-eyed “Aryans.” What this concern neglects is that the biological lottery – i.e. nature – has no mind to fairness. Some are born gifted and talented, others with short painful lives or severe disabilities. While we may worry about the creation of a genetic masterclass, we should also be concerned about those who draw the short genetic straw.” There are potential downsides. Caplan said that gene-editing might create an even wider gap between the haves and have-nots. He also warned that it may produce an intolerance of disability and imperfection, and a “narrowing” of human diversity.
As MacDonald Glenn explained to Gizmodo, the committee members are hoping to prevent a potential unknown harm, a restatement of the precautionary principle. “The difficulty with the precautionary principle is that it requires proving a negative,” she told Gizmodo. “If we applied the precautionary principle to almost everything in modern life (bicycles, microwaves, cell phones), we would never have any innovation.” What’s more, the idea that there are “moral and ethical considerations in purposefully altering human evolution [that may preclude us from] using this technology” is problematic. We most certainly have a moral obligation to influence human evolution with technology. To do otherwise would be to succumb to Darwinian selection, which works off a brutal process of trial and error, and often produces less-than-ideal results.
And as MacDonald Glenn explained, the very fundamentals of medicine would be threatened by a prohibition. “The primary moral argument behind gene-editing relates to the purpose of medicine,” she said. “The very purpose of medicine is to cure disease, and if the disease is incurable, to alleviate suffering. It is a quintessential element of compassion that we want to provide comfort and care to those who are ailing.” And any proposed moratorium on human gene-editing would likely violate our reproductive freedoms. “It interferes with procreative choice, a notion that is recognized in the law and valued greatly in this country,” MacDonald Glenn told Gizmodo. “The government does not mandate how many children one should have or how we have them. Government interference in this arena would be an impingement on procreational freedom and harken back to the days of Buck vs Bell, where Virginia and other states involuntarily sterilized those they deemed ‘feeble minded.’”
As for the claim that some alterations might negatively affect future populations, and that these modifications would be difficult to remove, that’s another questionable unknown. Traits will be selected (or discarded) according to their efficacy. It’s reasonable to assume that if it’s good for the individual, it will be good for that person’s offspring. And if not, modified parents of the future, in conjunction with the technologies and norms of the day, will choose to “roll back” and revert to the original genetic blueprints. Furthermore, genetic fixes and enhancements won’t happen in isolation. Parents, working with their doctors, will hew to established guidelines and oversight regimes. The idea that a “wild west” world of genetic enhancement awaits us in the future is unlikely. Lastly, the committee’s claim that “the human genome is shared among all nations” is also questionable. A singular, discrete genome belongs to the individual, not “all nations.” And the suggestion that there even is a concrete and inviolable thing called a “human genome” is dubious. Earlier this year, geneticists scanned the genomes of 2,504 people from around the world, allowing them to map the 88 million ways that humans are genetically different.
Despite those objections, the committee did not explicitly rule out the possibility that gene-editing in humans will be allowed in the future:
The international community should strive to establish norms concerning acceptable uses of human germline editing and to harmonize regulations, in order to discourage unacceptable activities while advancing human health and welfare. We therefore call upon the national academies that co-hosted the summit… to take the lead in creating an ongoing international forum to discuss potential clinical uses of gene editing; help inform decisions by national policymakers and others; formulate recommendations and guidelines; and promote coordination among nations.
This is exceptionally well said, and extremely encouraging. The report isn’t calling for a moratorium, but rather, for an ongoing dialogue. The gene-editing committee could have very easily gone the other way, and set the United States back in this critical area of research. Now, over the course of the next few years and decades, we can expect to see the kinds of scientific advances that will result in safe, effective, and accessible genetic interventions.”
It Should Be Legal To Hack Your DNA
by George Dvorsky / 3/24/15
“A group of geneticists has called for a moratorium on research into modifyingheritable human DNA — a practice that could lead to so-called “designer babies.” But as scientists consider this drastic proposal, they should also recognize the potential benefits this technology could afford – and the risks of an outright ban. Before we begin, you should be familiar with the two broad types of gene therapy. So-called “somatic” gene therapies target the non-reproductive cells of the body, and affect only the patient receiving the therapy. In other words, the genes addressed by somatic gene therapies are not heritable. Germline gene therapies, in contrast, are genome-editing techniques that affect egg and sperm cells. The modification of these germ cells can result in all the cells in the organism containing the modified genetic information, which would allow the altered code to be passed down to subsequent generations.
In an editorial published earlier this month at Nature, geneticist Edward Lanphier and four other researchers currently investigating somatic gene therapies call for a temporary ban on germline gene therapy, citing “grave concerns regarding the ethical and safety implications of [research into germline gene therapies].” The authors also express fear that such research could have a “negative impact… on important work involving the use of genome-editing techniques in somatic (non-reproductive) cells” – i.e. their own research.
In their Nature letter, Lanphier and his colleagues write:
In our view, genome editing in human embryos using current technologies could have unpredictable effects on future generations. This makes it dangerous and ethically unacceptable. Such research could be exploited for non-therapeutic modifications. We are concerned that a public outcry about such an ethical breach could hinder a promising area of therapeutic development, namely making genetic changes that cannot be inherited.
At this early stage, scientists should agree not to modify the DNA of human reproductive cells. Should a truly compelling case ever arise for the therapeutic benefit of germline modification, we encourage an open discussion around the appropriate course of action.
Today, 15 of 22 European nations prohibit the modification of human germ lines. It’s also illegal in Canada. In the U.S., legislators haven’t officially prohibited this sort of research. That said, the NIH’s Recombinant DNA Advisory Committee has stated that it “will not at present entertain proposals for germ line alterations.” Lanphier and his colleagues would like to take the NIH’s injunction a step further by introducing a voluntary moratorium, which would serve to discourage human germline modification and raise public awareness about the issue.
Therapy vs. Enhancement
The researchers published this article because, in their words, “It is thought that studies involving the use of genome-editing tools to modify the DNA of human embryos will be published shortly.” Lamphier and his colleagues claim that they, like others, “oppose germline modification on the grounds that permitting even unambiguously therapeutic interventions could start us down a path towards non-therapeutic genetic enhancement.” But this stance is not particularly helpful, given that the line distinguishing therapy from enhancement is not so clearly drawn. Human health, after all, is a normative concept. It’s driven by advances in the medical sciences and changes to social conceptions. Consequently, as time passes, it will be increasingly difficult to distinguish between a therapeutic intervention and an enhancement. For example, vaccinations are an enhancement — a super-immunity we’re not born with. Having the capacity to read, acquiring a a good education, and being able to access the Web can be considered an enhancement. In future, we can expect to be further “enhanced” by synthetic organs, artificial limbs, nootropics (think about how Ritalin has already been used by people who don’t have ADD), and nanotechnology. Our species is on the cusp of the enhancement era, so we’d better start getting used to it.
Chinese scientists genetically modify human embryos
A Reproductive Right?
Human trait selection can also be considered a form of assisted reproduction, one not unlike in vitro fertilization. Consequently, it can be seen by prospective parents as an indelible component of reproductive liberty and the right to bear children according to their desires and values — so long, of course, as these genetic modifications are safe, effective, and governed by institutional processes. Fears of parents wanting to alter their offspring’s eye or hair color misses the point, as are concerns that parents will demand a “perfect child.” The nature of the proposed enhancements, as it were, have a bit more substance to them than that. For example, scientists have already isolated the genetic variants for extra-strong bones, lean muscles, insensitivity to pain, and virus resistance. All those seem quite reasonable, as do those modifications that boost immunity to age-related disorders (again, in a certain light, even anti-aging can be seen as a kind of enhancement).
In future, parents may also be able to bear offspring with a diminished proclivity for psychological disorders, including depression. And as noted by Duke University bioethicist Allen Buchanan and his co-authors in From Chance to Choice: Genetics and Justice, the prospect of genetically modifying our offspring will also have a profound influence on our appreciation of distributive justice (i.e. making sure most people have access), equality of opportunity, the rights and obligations of parents (e.g. could un-modified children sue their parents for failing to use these technologies?), the nature and meaning of disability, and the very concept of human nature, and what it even means to be human.
Some might argue that genetically modifying human offspring sounds like a transhumanist or even eugenicist agenda — but as Harvard geneticist George Church has noted, “throwing in the word ‘transhumanists’ is unnecessarily confusing.” When asked if germline modifications represent the next logical step in human genetics research, he told the Knoepfler Lab Stem Cell Blog: “I don’t think that germline is the next goal (nor next logical step), but it might be an acceptable side-effect of treating genetic diseases early, safely and effectively. Many gene therapies currently in clinical trials are already aimed at young children to avoid permanent damage. Treating sperm and eggs could reduce the number of abortions (spontaneous and induced) and the number embryos needed in IVF clinics.” In other words, there are unforeseen and peripheral benefits to this research; when a ban is placed on research, the biggest loss is liable to be a therapeutic discovery we could never have predicted or account for from our current vantage point. Another problem of a research ban is the likelihood that black markets will emerge. In my opinion, it’s far better to have a regulated and monitored development regime than a slew of shady basement labs.
And in regards to the claim that germline therapy could constitute a new form of eugenics, Church had this to say:
Eugenics in USA from 1907 to 1981 involved government sterilization of 65,000 individuals to “improve” the gene pool. The new technology enables parents to make choices about their children just as they might with Ritalin or cleft palate surgery to “improve” behavior or appearance. To prevent such parental decisions, the government would again interfere with reproductive choice, but this time in the apparent opposite direction in terms of improving the gene pool. To give the same name (eugenics) to these two scenarios seems unnecessarily confusing. Should we be talking about benefits and risks? Yes. Frequently and engaging many voices.
Many years ago at a bioethics conference at Yale, I referred to state-imposed restrictions on the human germ line as “neugenics” — a top-down injunction to ensure human genetic stasis. It would appear that Dr. Church shares my concern. The authors of the Nature editorial are not wrong to call attention to this issue. As geneticists, they know what’s at stake. But to call for an outright moratorium is clearly not the way to go. Let’s have an open discussion, absolutely – but let’s be sure to recognize that humanity is a species in transition; heritable germline modifications may very well be the way of the future. Rather than being forged by the powers of natural selection, humanity is finally taking its destiny — and its genomes — into its own hands.
For further reading on this subject I highly recommend John A. Robertson’s Children of Choice: Freedom and the New Reproductive Technologies, Allen Buchanan’s Better Than Human: The Promise and Perils of Enhancing Ourselves, Gregory Stock’s Redesigning Humans: Choosing our Genes, Changing our Future, and Ramez Naam’s More Than Human.”
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