Genetic Justice: Identity and Equality in the Biotech Age
This is a post-peer-review, pre-copyedit version of an article published in Development. The final authenticated version is available online at: https://link.springer.com/
As genetic technologies merge with forensics, medicine, and human reproduction, renewed eugenic temptations are arising. The prospect of heritable genetic modification has been debated for decades; the prevailing position in international policy and human rights documents has been that, due to its numerous safety and social risks, it should be legally off limits. The question is now at a tipping point. With decisive action, we can avoid this threat to the future of equality.
DNA, genetic testing, heritable genome editing, pre-implantation genetic diagnosis (PGD), eugenics
A series of television commercials for the direct-to-consumer genetic testing company AncestryDNA, which have aired frequently in the US for several years, promises to help you learn ‘what makes you, you’. One ad features a man who grew up in a family with German cultural traditions, but ‘traded in his lederhosen for a kilt’ when he learned that ‘52% of his DNA was from Scotland and Ireland’. Another, which aired during the 2018 Winter Olympics, urges viewers to discover their ‘greatness’ with an Ancestry DNA test. It depicts a young white figure skater practicing, while a voiceover explains how an Ancestry DNA test can reveal the source of the athlete’s precision, grace, and drive – as each attribute is named, a pie chart appears in the background, revealing ‘Scandinavia 48%’ in time with ‘precision,’ ‘Central Asia 27%’ in time with ‘grace,’ and ‘Great Britain 21%’ in time with ‘drive’ (Lowthorp 2018). A few months later, 23andMe teamed up with Fox Sports for a campaign to encourage Americans, whose soccer team did not make the World Cup finals, to ‘root for your roots’ – using their genetic ancestry test to find ties to another country’s team (Garzon 2018).
In the context of growing nationalism and xenophobia globally, it’s not difficult to see how dangerous it is to popularize the idea that ‘ethnicity,’ ‘roots,’ or even ‘nationality’ – let alone ‘what makes you, you’ – are determined by genetics. And research has shown that genetic ancestry testing does just that, reinforcing people’s belief in race as a biological category (Bolnick et al. 2007). In fact, white nationalists and neo-Nazis have flocked to ancestry testing to seek results that they think ‘prove’ their racial purity. They have also developed a range of critiques of these tests, some quite sophisticated and some less so, when the tests fail to provide the desired results (Panofsky and Donovan 2019).
But these concerns about genetic testing and identity don’t stop with encouraging individuals to understand themselves in increasingly determinist and essentialist ways. Genetic testing now plays growing roles in politics, law enforcement, and migration, and in myriad other ways in which states interact with their citizens and others. Genetic testing is also increasingly being harnessed by a range of corporate players. As commercial genetic testing merges with medicine and assisted reproduction, these genetic influences are likely to balloon.
Genetic understandings of identity have bled into rising nationalism and identity politics in disturbing ways. In 2009, the president of Turkey was asked to submit to genetic testing to prove he isn’t Armenian, and in 2012 a genetic testing lab in Hungary certified that a member of parliament’s DNA did not show any evidence of Jewish or Roma ancestry (Shanks 2009; Abbott 2012). In 2018, US presidential candidate Elizabeth Warren offered her own genetic ancestry test to support her claims of Native American ancestry (Zimmer 2018). The same year, Canada’s Border Services Agency confirmed that it was using commercial DNA ancestry testing to determine some migrants’ nationalities (Khassam 2018).
In the US, the results of direct-to-consumer genetic testing are increasingly finding their way into the hands of law enforcement. GEDMatch, an open source genetic database initially intended for genealogy research and finding relatives, became a playground for the new field of forensic genetic genealogy when police in California used the site to identify a suspect in the Golden State Killer case (Kolata and Murphy 2018). Dozens of cases have used these kinds of databases to generate leads, and companies have sprung up that sell this as a service to law enforcement agencies (Aldhous 2019). In fact, one such company, Verogen, just purchased GEDMatch, bringing the process full circle (Molteni 2019).
So far, all but one of the major direct-to-consumer testing companies have chosen not to open their databases for law enforcement uses, but it is possible that they will change their policies or be forced to do so by court order. And researchers have estimated that the sheer number of profiles in genetic databases right now means that up to 95 percent of the population of the US could be identified through this kind of familial search, leading experts to call them a ‘de facto’ national DNA database, and a national security leak waiting to happen (Erlich et al. 2018; Ram 2019; Regalado 2019). Private ownership of vast DNA databases, with some companies’ business models dependent on selling access to this data, raises significant concerns related to data privacy and security, especially in combination with its use in law enforcement.
Governments are also building up their own massive DNA databases, often through national genome and biobank projects or their health systems, with the stated intention to leverage the data for scientific research toward developing ‘precision medicine’. But these databases have potential for much more concerning surveillance and human rights abuses (Moreau 2019). In 2019, police in the western Chinese province of Xinjiang are using DNA samples acquired under dubious circumstances to build databases that will help them monitor the minority Muslim Uyghur population. In the United States, the Department of Homeland Security authorized the mandatory collection of DNA and its storage in police databases from immigrants in custody at its borders, including at legal ports of entry (Moreau 2019).
These practices raise the specter of 20th century abuses of genetics in large-scale, government-organized eugenics projects. Eugenic temptations, this time implemented not through state coercion but through individual market choices, can also be discerned in current and prospective applications of genetic selection and genome editing technologies to human reproduction. In addition to the mushrooming market for early non-invasive prenatal genetic testing, multiple companies in the US and China have developed and marketed genetic tests to parents that promise to identify young children’s intelligence, interests, athletic ability, and even personality. Now one company has taken this disturbing step further, offering to sequence the genomes of IVF embryos and provide a scorecard that identifies embryos with the highest risk of developing diseases like breast cancer and type 1 diabetes, but also short stature and ‘low intelligence’ (Lemieux 2019; Shanks 2019).
Beyond this lies the prospect of heritable genome editing: manipulating the genomes of eggs, sperm, or early embryos and using them to start pregnancies so that the altered genome would appear in every cell of the eventual child’s body – and would be passed down to subsequent generations. This is wholly different from the development of somatic gene therapies, which make changes to the genomes of existing patients in order to treat disease, without altering the DNA that would be passed to future generations. Heritable genome editing carries a range of scientific and technical risks, including the potential harms of off-target edits, incorrect insertions or deletions at the targeted site, mosaicism, and the unpredictable health effects of edited genomes in future children and generations. It also poses significant ethical concerns and dangerous societal effects.
The medical justification for germline gene editing is thin (Lanphier et al. 2015). Despite proponents’ claims that heritable human genome editing holds immense promise for curing disease and reducing human suffering, using gene-edited embryos for reproduction should not really be considered a medical treatment: no existing patient is treated or cured. Preventing the transmission of genetic diseases to future generations can already be accomplished through several established methods (Lander et al. 2019). Prospective parents have the options of using donor gametes or adopting in order to have an unaffected child. Those who wish to avoid passing on a genetic condition and to have a child who is genetically related to both parents can do so in almost all cases using an embryo screening technique called pre-implantation genetic diagnosis. PGD has been used for two decades to safely and effectively screen IVF embryos, giving prospective parents the option to transfer only those embryos that are unaffected. While PGD also raises numerous ethical questions, particularly around what kinds of lives we will welcome into the world, heritable genome editing raises these questions to an exponential degree, because it allows the design of future children through the introduction of new traits.
This fundamental shift in the relationship between generations might mark one of the most significant ways in which heritable genome modification could alter identity. Would parents (those with the means to afford genetic modifications, which would always be costly) begin to think of or treat their children as expensive commodities to be upgraded and customized to order? Would genetically modified children feel they had been denied an open future? Given the rapid obsolescence that comes along with a relentless rate of technological development, it might be that genetically ‘upgraded’ children would be out-of-date as quickly as the latest iPhone model. This would have profound implications for our identities, and over a few generations, could even erode our experience of a common humanity (McKibben 2019; Buchanan 2019; Sparrow 2019).
Adopting heritable genome editing on a large scale would also pose risks to already vulnerable and marginalized groups in our societies. The availability of germline genome editing for reproduction could increase disability stigma and discrimination, resulting in loss of societal and material support for disabled people and communities. Pervasive ableism and contested definitions of disease could lead valuable forms of human variation that many people consider central to their identity to be targeted for ‘editing out’ (Garland-Thomson 2019). It might also result in pressure on women to undergo otherwise unnecessary IVF procedures (with all of the attendant risks) in order to give their child the ‘best possible start in life’. Women would also experience increased risks as egg donors for genome editing research and as those who would gestate gene-altered embryos (Adams 2019).
These are just a few of the ways that heritable genome editing could exacerbate existing inequalities within societies, and even introduce new forms. Whether or not children who developed from genetically modified embryos were really smarter, stronger, or otherwise ‘enhanced’, they would likely be perceived as superior – and as we know from the sordid history of racism, perceptions matter: powerful social and economic disparities and discrimination have been driven by false ideas about the biological ‘fitness’ of some groups over others. On a global level, heritable genome editing could vastly increase the already large disparities between the global North and South. Without international consensus and cooperation, differing laws could result in ‘ethics dumping’ and increased reproductive tourism. The results could be as dire as a world divided into genetic ‘haves’ and ‘have nots’.
For these reasons, the prospect of heritable genetic modification has been debated for decades, including in international policy and human rights circles (Darnovsky et al. 2018). Around the turn of the millennium, policymakers in dozens of countries concluded that safe and effective gene therapies to treat disease in existing patients should be supported, but that the threat to human rights and social equality posed by altering the genes and traits of future children and generations should place it legally off limits.
The Council of Europe’s 1997 Convention on Human Rights and Biomedicine (the Oviedo Convention), a binding treaty ratified by 29 nations, is the most widely known example of policies that prohibit germline interventions. Article 13 of the explanatory report notes that [t]he ultimate fear is of intentional modification of the human genome so as to produce individuals or entire groups endowed with particular characteristics and required qualities.
Also issued in 1997, UNESCO’s Declaration on the Human Genome and Human Rights, asserts in Article 1 that ‘the human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity’, concluding in Article 24 that germline interventions could be ‘contrary to human dignity’. While not legally binding, reading the declaration in combination with the Oviedo Convention and laws prohibiting germline modification in more than 50 countries shows the strength of the global policy stance against pursuing heritable human genome editing (Darnovsky et al. 2018).
The recent development of CRISPR and other gene editing tools, which are cheaper and easier to use than earlier techniques, has again raised the prospect of heritable human genome editing and, indeed, has resulted in the world’s first ‘CRISPR babies’ (Baylis 2019). For a small but vocal contingent of proponents, the improved technological tools and a reckless lurch into the production of gene-edited children are grounds for re-opening policy discussions to allow heritable genome editing to move ahead (Dzau et al. 2018).
But scientists themselves are deeply divided on the question of heritable human genome editing (Baylis and Darnovsky 2019). In the past year, dozens of prominent scientists (including CRISPR pioneers) and bioethicists (Lander et al. 2019), biotechnology executives, and civil society groups and public interest advocates have called repeatedly for a moratorium on or prohibition of heritable human genome editing, while signalling strong support for the development of safe, effective, and accessible gene therapies.
In response to the birth of the first ‘CRISPR babies’, two international efforts have taken up the question of how to govern heritable genome editing, one convened by the World Health Organization (WHO) and the other jointly by the US National Academies of Sciences (NAS) and the UK Royal Society. Unfortunately, these projects do not inspire confidence. Given the remaining technical obstacles and safety risks, and the potentially irresolvable ethical and societal dangers of heritable genome editing, why is the NAS commission tasked with plotting a path toward its clinical use? The commission appears to be a runaway train, barrelling ahead on the assumption that both the science and the broader societal conversation about whether heritable genome editing should go forward at all are far more settled than they are (Hasson 2019).
It’s unclear whether the WHO panel will be very different. So far they have brushed aside calls for a global moratorium, although the WHO Director General’s strong statement that ‘regulatory authorities in all countries should not allow any further work in this area until its implications have been properly considered’ has apparently been effective in deterring Russia from allowing scientists there to rush into human germline editing (Grebenshchikova 2019).
The bigger problem with both commissions is the narrow range of voices they include. As the UNESCO Declaration affirms, this is a matter that touches on all of humanity and the decision about whether to pursue it is therefore a global responsibility. In other words, we should all have a say in decisions about this potentially species-altering technology (Baylis 2019). Broad and inclusive public deliberations that include effective mechanisms for influencing policymaking will be necessary if we want to keep individual scientists or small groups of gene-editing enthusiasts from making the decision for us all (Andorno et al. forthcoming).
An enforceable global moratorium would preserve time for these deliberations to take place. We’re at a tipping point now on the question of creating genetically modified human beings, much as we were a decade or so ago with climate change. With simple but decisive action, we can avoid this threat to the future of equality, and reclaim human biotechnology for the common good (Dickenson 2013).
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