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The Myth of the Designer Baby\u2014Why \u2018Genetic Optimization\u2019 Is More Hype Than Science<\/p>\n
A genomics firm saying they can help parents with \u201cgenetic optimization\u201d of their embryos is tone-deaf Silicon Valley marketing trampling over legitimate science. Parents should be wary<\/p>\n
An understandable ethics outcry greeted the June announcement of a software platform that offers aspiring parents \u201cgenetic optimization\u201d of their embryos. Touted by Nucleus Genomics\u2019 CEO Kian Sadeghi, the $5,999 service, dubbed \u201cNucleus Embryo,\u201d promised optimization of traits like heart disease and cancer resistance, as well as intelligence, longevity, body mass index, baldness, eye color, hair color and left-handedness. It also promised to weed out what makes someone an alcoholic.<\/p>\n
That left one commentator, a venture capitalist, feeling \u201cnauseous.\u201d Critics worried that it \u201ctreats children as marketable goods.\u201d More than one reference to \u201cdesigner babies\u201d and \u201ceugenics\u201d naturally followed. \u201cThe GATTACA Future Is Here,\u201d read one headline, referencing the classic sci-fi film from 1997 that imagined a dystopian future where genetically engineered \u201cValids\u201d reign supreme over the \u201cIn-Valids\u201d who were conceived the old-fashioned way.<\/p>\n
As professional bioethicists, we would have those same concerns\u2014if Nucleus Embryo actually did what it claims. But it doesn\u2019t. The cinematic analogy to Nucleus Embryo isn\u2019t GATTACA. It\u2019s The Dropout\u2014the 2022 miniseries about the rise and fall of Elizabeth Holmes and Theranos.<\/p>\n
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To be clear, there\u2019s no sign of the intentional deception that marked Theranos, but there are striking parallels in commercializing a research tool into something it isn\u2019t. Like Holmes, Sadeghi dropped out of a prestigious university to start his own biotech company, wooing enough Silicon Valley investors to launch his start-up. (Is it mandatory that all CEOs of biotech start-ups be college dropouts?) Like Holmes, Sadeghi draws on personal experience with the medical industry and its disappointing results as part of the inspirational narrative he uses to motivate his call for a health revolution. And like Holmes\u2019 Theranos, Sadeghi\u2019s Nucleus Embryo starts from existing technology, and uses that reliable foundation to then leap into the realm of fantastic claims that may entice venture capitalists and wealthy but naive customers but don\u2019t hold up to scrutiny when you start seriously poking around.<\/p>\n
Sadeghi sees it differently: \u201cNot that long ago, IVF once sparked fear and the stigma of test tube babies,\u201d he said in a launch video aimed at would-be parents. \u201cToday\u2019s it\u2019s how one in 50 people in the U.S. are conceived. What was once controversial is now an everyday practice. The same is true with genetic optimization. The technology is now here, and it\u2019s here to stay.\u201d<\/p>\n
But it\u2019s not. At least not the way Sadeghi depicts it: Parents-to-be have utilized preimplantation genetic diagnosis as part of in vitro fertilization for decades. After a set of fertilized embryos are created by IVF, a sample of DNA from each is extracted and tested. The parents can then select which embryo or embryos to implant based on their genetic profiles. The technology has been extraordinary for families plagued by hereditary diseases, such as Huntington\u2019s disease and Tay-Sachs disease\u2014deadly conditions with known genetic causes. The technology can also show major chromosomal abnormalities that might make an embryo less likely to be viable if implanted. In more recent years, diagnostic services have expanded to test for other, rarer genetic conditions, which may not appear so frequently in families but are still debilitating. IVF and preimplantation genetic diagnosis are very expensive, and there are legitimate ethical concerns about who is able to access the technology and who is not. But there is little ethical handwringing about parents who use the technology to prevent transmitting a horrific disease to their child, or who opt not to implant an embryo that might not develop.<\/p>\n
But let\u2019s say a couple undergoing IVF doesn\u2019t just want a child without a deadly disease. Let\u2019s say they want a child who will be at low risk of cancer and heart disease, and also highly intelligent, slender, acne-free and destined for a long life. Enter Sadeghi\u2019s Nucleus Embryo. The genetic optimization software offers the parents an opportunity to test for all these traits and hundreds more in up to 20 embryos.<\/p>\n
This is where we enter Theranos territory. Unlike Huntington\u2019s disease and Tay-Sachs disease, there are no major genetic markers for many cancers or a truly definitive set for heart disease, let alone for intelligence, acne, body-mass index or longevity. Geneticists have known this for decades. Granted, there are hundreds of locations across the human genome where genetic variants have ever-so-slight positive or negative associations with those traits, and information about what\u2019s at each of those locations can be combined into one big measurement called a \u201cpolygenic risk score,\u201d which many geneticists use for research purposes. But the clinical value of polygenic risk scores for even straightforward medical conditions like asthma and stroke remains highly dubious. Most of the research so far has been done almost exclusively on people with Western European ancestry, so there\u2019s little guarantee that the predictions extrapolate to people with family trees that trace to different parts of the globe. And even for people of European ancestry, the predictive power of polygenic risk scores remains so severely limited that you won\u2019t find them part of standard clinical care anywhere in the world. The Washington Post noted “serious reservations\u201d in medicine over such use earlier this month, and no peer-reviewed research supports it.<\/p>\n
Nucleus Genomics says it offers customers the ability to engage in genetic optimization because the potential parents can select among embryos based on the genetic information that Nucleus Embryo provides. But that isn\u2019t genetic optimization; no embryos or genetic material is optimized in some technologically innovative new way. It\u2019s just old-school preimplantation genetic diagnosis of fertilized embryos, irresponsibly expanded to offer prospective parents the illusion of control over things like IQ and mental health when the science isn\u2019t there to support the claims. The company also makes counseling about this mountain of confusing information optional, which is not optimal.<\/p>\n
Sadeghi\u2019s Nucleus Embryo is what happens when you Silicon-Valley-ify diagnostic genetics. Scientific reliability is swapped out in exchange for braggadocio about disrupting a medical status quo that may not even need it. Peer-reviewed research is less important than a punchy promotional video. Widespread uncertainty about the clinical value of polygenic risk scores gets buried under a snazzy app that lets you name each embryo you\u2019re testing. Established clinical guidelines about what traits warrant genetic testing and what don\u2019t are cast aside as affronts to your reproductive and capitalistic liberty: \u201cSome people don\u2019t think you should have this choice,\u201d Sadeghi says. \u201cBut it\u2019s not their choice to make. It\u2019s yours.\u201d<\/p>\n
When confronted with the Theranos comparison in this essay, Nucleus Genomics and Sadeghi called it unfair, defending Nucleus Embryo as helping people, not harming them. We disagree but not for the reasons raised by the critics who have assumed that Nucleus Embryo works the way its marketing says it does.<\/p>\n
If Nucleus Embryo really let you optimize your potential child\u2019s intelligence or dial up her longevity, dial down her acne and steer clear of the dreaded left-handedness, then there would be some deep ethical questions to ask about designer babies, the legacy of eugenics and the marketization of children. But you can rest easy. This isn\u2019t GATTACA. There\u2019s no danger of the genetically optimized, unblemished, lithe and right-handed Valids ruling over the In-Valids, whose parents couldn\u2019t afford Nucleus Embryo.<\/p>\n
The real danger is that a bunch of wealthy parents-to-be who are too eager to control their children\u2019s biological future will shell out $5,999 for a product that offers no such control. Those parents might avoid perfectly healthy embryos, scared of implanting ones that don\u2019t appear to be sufficiently optimized. Or it could result in children being born to those parents and expected to live up to their purchased optimized future, but instead winding up very much like the variety of humans who proceeded them.<\/p>\n
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.<\/p>\n","protected":false},"excerpt":{"rendered":"
The Myth of the Designer Baby\u2014Why \u2018Genetic Optimization\u2019 Is More Hype Than Science A genomics firm saying they can help parents with \u201cgenetic optimization\u201d of their embryos is tone-deaf Silicon Valley marketing trampling over legitimate science. Parents should be wary By Arthur Caplan & James Tabery An understandable ethics outcry greeted the June announcement of<\/p>\n","protected":false},"author":1,"featured_media":12745,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[50],"tags":[6403,6401,2670,6402,6404],"class_list":{"0":"post-12744","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-environment","8":"tag-embryos","9":"tag-genetically","10":"tag-misleading","11":"tag-optimizing","12":"tag-unethicaland"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/12744","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=12744"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/12744\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/12745"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=12744"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=12744"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=12744"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}