The Ethopolitics of Reproduction
Biopolitical strategies and their effects on the reproductive choices of people with disabilities, chronic illnesses, and carriers for genetic conditions
(Content Warning: This essay discusses eugenics, abortion, ableism, disability, chronic illness and genetic conditions in a manner which might be uncomfortable or upsetting for some readers.)
“We face discrimination every day in schools, in the work place and in society. And now thanks to this verdict the judges have upheld discrimination in the womb too.”
In 2021, Heidi Crowter, a woman with Down syndrome, lost her appeal to the UK High Court concerning a law that legalises the abortion of foetuses with Down syndrome up until birth (BBC 2021). In the UK, abortion is legal up until 24 weeks of pregnancy, except when “there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”. Heidi Crowter and her legal team argued that this legislation does not “respect her life”. Crowter’s appeal was overturned, with the judges of the case stating that the current law balances “the rights of the unborn child and of women [sic]” (BBC 2021).
Biopolitics
Michel Foucault, a celebrated French philosopher and historian, argues that the focus of political power has shifted from a power over death (which he calls sovereign power) to a power to manage and administrate life (Foucault 2013, 44). He terms this new kind of power ‘biopower’, and writes that biopower takes two basic forms: “anatomo-politics” and “bio-politics” (Foucault 2013, 44). The latter form, bio-politics, concerns power over the human species itself and the conditions which influence reproduction, birth, death, longevity and health (44). This essay will engage in a biopolitical analysis of the reproductive choices of disabled and chronically ill people, and carriers[1] of genetic conditions.
I will begin by identifying the biopolitical discourses, policies, technologies and practices associated with the reproductive choices of disabled and chronically ill people and carriers. ‘Discourse’ within the context of this biopolitical analysis should be understood not as the everyday discussions of citizens, but as ideologies and global interpretative frameworks that are introduced by religions, politicians, and other authorities. These discourses have sufficient power to shape or influence policies and technologies. Practices can be understood as lifestyle, and the way in which people tend to behave within a society.
The discourse surrounding health and disability is very visible in the outcome of Heidi Crowter’s High Court appeal. Disabilities and chronic illnesses are conflated with suffering, and conversely, health and able-bodiedness are associated with positive well-being. This discourse is biopolitical, since it concerns the management of the human population and their health. In response to the discourse surrounding health and disability, policies have arisen or been amended to respond to the threat of disability. The UK Abortion Act, which permits the abortion of abnormal foetuses after the 24 week mark, is one of many laws of a similar nature – in 2017, 61% of countries permitted legal abortions in instances of “foetal impairment” (United Nations 2020, 1).
In order to more accurately predict the health of a potential human being, technologies such as genetic screening and prenatal testing have been developed, and are often recommended as part of family planning and prenatal care (NHS n.d., John Hopkins Medicine n.d.). The aim of these predictions is to inform prospective parents of the risk of their future children having disabilities or genetic conditions. While online resources are evasive about the next steps once a disability or genetic condition has been discovered in testing, it is safe to assume, given that these tests are offered to those who are planning to start a family, that these tests are intended to be preventative on some level.
To summarise: on the level of discourse, disabilities and ill-health are conflated with suffering and are thus undesirable. On the level of policies, campaigns and laws are put in place to avoid ill-health, and it is increasingly becoming legal to terminate pregnancies on the grounds of “foetal impairment”. Technologies such as prenatal testing and genetic screening exist to identify, and sometimes ‘disallow’ disability and ill-health via termination. Having briefly discussed the biopolitics involved in reproduction, I will explore the ways in which these biopolitical strategies influence the reproductive practices of disabled and chronically ill people and carriers.
Abnormality & Disability in Genetic Screening and Prenatal Testing
In “Biopolitics and Human Reproduction”, Catherine Mills (2017) explores the role of reproduction in biopolitics. Mills writes that 19th and early 20th century biopolitics concerning reproduction involved a great degree of state intervention (283). Regarding the aim of eugenics, she concludes that eugenics aims to secure the survival of the nation through “quality control”, and that control over birth entails controlling who is born, and also who gives birth (288).
Mills argues that today, the principle of procreative liberty ensures that institutions cannot prevent a person from choosing to reproduce (unless the choice will cause harm to others) – a marked departure from the negative eugenics policies of the 19th and early 20th centuries, which directly interfered with the reproduction of citizens (Mills 2017, 283). However, this is not to say that biopolitics is no longer involved in reproduction. Individuals have the freedom to make their own reproductive choices, but their choices make them responsible for the health of society as a whole; “responsibilized” (Foucault 1990, 104-5 in Mills 2017, 284) prospective parents exercise biopolitical control mechanisms on themselves (Mills 2017, 283-4). In other words, the biopolitical responsibilization of individuals has taken the place of direct intervention into reproduction by institutions.
Mills continues her argument by discussing the role that “normalization” (282) plays in biopolitical discourse and technologies surrounding reproduction. She writes that the parameters for a normal (healthy) foetus as observed through ultrasound technologies are derived from the measurements of other foetuses – a foetus can fall into the “healthy range” if it exists within a norm that has been “derived statistically from pre-existent bodies” (290). This is not to say that ultrasound technology dictates that a foetus that falls outside of normalcy must be terminated; rather, what is “normal” becomes valued and what is “abnormal” becomes devalued (290).
Mills proposes that, as opposed to being an innocent measure to observe whether or not a foetus falls within “normal ranges”, prenatal testing technologies which target “foetal malformations” are responsible for creating an association between the statistical normal and a particular quality of life (Kittay 2006 in Mills 2017, 290). Institutions cannot directly intervene in matters of reproduction, but they can present prospective parents with the results of a test that makes an a priori assessment of the quality of life of their offspring, based on associations between statistical normality and the ability to lead a particular kind of life. This association results in the exclusion of the statistical abnormal from the biopolitical community via selective termination (282).
As Mills argues, the medicalisation of pregnancy has meant that those who can become pregnant[2] have become “moral pioneers”, making decisions about life and death on the basis of medical testing that was unavailable to prior generations” (2017, 289). While the choice to ‘disallow’ life lies with the prospective parents, institutions create and advise on the basis of norms, from which ideas about quality of life, well-being and value are derived (290). As a result of the availability of statistics and predictions about the health of a foetus, prospective parents are made aware of suffering before it happens, and are given the choice to ‘disallow’ it, or ‘allow’ it on the grounds of an ethical obligation to prevent others from suffering through a low quality of life.
The technologies of contemporary biopolitics ensure that individuals are aware of the risks at play in their reproductive decisions. Responsibilized individuals can no longer “passively” choose to reproduce in the presence of the possibility of disability or a genetic condition. Technologies such as ultrasounds and prenatal tests are so ubiquitous that in refusing to be tested, one makes the conscious choice to ignore the advice of biopolitical institutions. Furthermore, since biopolitical discourse posits that some instances of disability and illness can be prevented via biopolitical technologies, prospective parents who make the choice not to “prevent” these instances of disability and illness are rendered responsible for the health of their children. Thus, every individual reproductive choice – even the choice not to engage with biopolitical technologies – is given an ethical significance.
Ethopolitics of Reproduction
Concerning the notion that individual choices have an ethical significance, Nikolas Rose (2001) writes that “contemporary biopolitics is ethopolitics” (2). By ethopolitics, Rose means a political system in which human lives and everyday choices are subject to continual moral judgement by the individual, with the aim of self-betterment (18). In an ethopolitical system, knowledge of one’s own biological and genetic risk factors becomes a part of one’s overall obligation to be responsible (19). Screening technologies allow experts to evaluate or mitigate risk when it comes to individuals’ reproductive decisions; Rose argues that these tests are a way to resolve the difficult ethical choice presented to prospective parents (12). The availability of genetic screening and prenatal testing, and also the possibility to seek an “ethical abortion”, creates a possibility for prospective parents to minimise or prevent the suffering that is associated with ill-health and disability. If one’s reproductive choices can cause suffering (by fostering life) or prevent suffering (by disallowing life), these reproductive choices become ethical choices.
Evidence of a higher risk (and thus a higher likelihood of the suffering associated with disability and chronic illness) presents an ethical argument, on the basis of biomedical science, against a particular reproductive decision. Rose argues that this has led to the prevalence of screening those in a ‘high-risk’ category for developing particular conditions or passing them on, and the use of amniocentesis[3] in order to identify genetic abnormalities in foetuses. Ultimately, “therapeutic abortion” may be offered to parents whose foetus tests positive for a genetic condition (Rose 2001, 12).
However, Rose argues, these risk evaluations are based on probability, not certainty. It is impossible to guarantee the results of prenatal screening – genetic testing can indicate a higher risk of developing a disease, but the tests cannot predict whether or not an individual will develop a condition with 100% accuracy, nor can they predict the severity or timeline of a condition with any certainty (12). Choices surrounding reproduction are evaluated not based on a “clear-cut algorithm”, but on a weighing-up of risk. “In this space, biopolitics becomes ethopolitics” (12).
Furthermore, second-trimester amniocentesis has an 0.1-0.3% chance of causing a miscarriage, even if the amniocentesis is performed by a skilled physician (1-3 in every 1000), and the risk is higher in the first trimester (Mayo Clinic 2022). The evaluation of risk hence involves the introduction of an additional risk. For whom could this additional risk be tolerable? Amniocentesis is usually only offered to those who are in a ‘high-risk’ category, such as those who are disabled and chronically ill, and carriers who have a family history of genetic conditions (Mayo Clinic 2022). The decision to perform amniocentesis in spite of the additional risk involves a judgement of the worth of the foetus. The unmitigated risk of disability or genetic disorder lowers a foetus’ worth, meaning the risk of causing damage or a miscarriage in the process of testing for these conditions is ethically permissible.
Rose writes that the power dynamic between prospective parents and influential voices within biomedicine is “pastoral” (2001, 9), rather than outright controlling. The ethics of the “guider” (experts on biomedicine) work in relation with the ethics of the “guided” (prospective parents). Rose argues that this pastoral process, whereby the expertise and ethics of the “guider” enter into discussion with the ethics of the “guided” often exacerbates feelings of shame, guilt, and a sense of obligation to a party that is not present and cannot advocate for themselves – the potential offspring of the “guided” (9-10).
There is much to be said about the affective potential of knowing that one could theoretically ‘give’ one’s offspring a gene that causes them to suffer. On the Genetic Alliance UK website, they have made a plea for those who have such a gene “to remember that genes are distributed by chance and having a faulty gene is no one’s fault” (Fletcher-Dallas 2016), demonstrating that the link between ‘giving’ and ‘causing’ can sometimes be drawn by those who test positive for a particular gene. Some prospective parents could feel as though, since their child is ill or disabled due to a gene they passed on, they have ‘made’ their child ill or disabled. In other words, if a prospective parent is made responsible for their own genes, by passing these genes to their child, they are responsible for their child’s suffering.
In the case of carriers, whom Rose describes as “those individuals carrying the markers or polymorphisms of susceptibility who are neither phenomenologically or experientially ‘sick’ or ‘abnormal’” (12), their understanding of the predicted quality of life of their potential offspring comes from information provided by “guiders”, rather than their own experiences. They simply carry genes that increase the risk for a particular condition. Any ethical judgements about the quality of life of their offspring, whether on the level of their medical or societal condition, are guided by the pastoral influences of discourse surrounding disability and abnormality.
Rose argues that, in consultations with biomedical experts about one’s reproductive choices, the affected party – the foetus – is not represented (Rose 2001, 9-10). However, while the foetus may not be able to represent themselves, there may be a person or persons present in the discussion who have an innate understanding of how that foetus would feel should they be ‘allowed’ to live – the prospective parents, should they be disabled or have a chronic illness themselves, can judge their quality of life a posteriori, not a priori. They know what it means to be disabled or have a chronic illness in the society they live in, so they understand the implications for the quality of life of their potential children. This, in combination with the pastoral guidance of biomedical experts who offer a host of preventative measures, means that the reproductive decisions made by disabled and chronically ill people are entangled in an ethopolitics of both affect and empathy. When considering having children, disabled and chronically ill people must consider whether it would be ethical to subject another human being to the conditions they are experiencing.
Disability, Heritability and Labour
Worth and Productivity
In common parlance, the phrases ‘quality of life’ and ‘well-being’ are often used interchangeably. Both terms involve an evaluation of a person’s life, and these evaluations can be either positive or negative. The frame of reference for both of these evaluations can be based on statistically-derived norms, as this essay has previously explored. In this sense, ‘high quality of life’ and ‘positive well-being’ both reflect a valuable life, and thus one can assume that a person with positive well-being also experiences a high quality of life.
However, there is a significant aspect in which these terms diverge in meaning. While ‘well-being’ concerns an individual’s health and happiness, ‘quality of life’ concerns a much broader range of factors. The World Health Organisation defines quality of life as: “individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (WHO 2012, 3).
Positive well-being is associated with high quality of life, but is not the only characteristic of a high quality of life. In fact, the World Health Organisation Quality of Life (WHOQOL) User Manual explicitly differentiates between ‘well-being’ and ‘quality of life’, stating that “quality of life cannot be equated simply with the terms ‘health status’, ‘life style’, ‘life satisfaction’, ‘mental state’ or ‘well-being’” (2012, 3). The WHOQOL lists six broad domains that are to be evaluated when considering one’s quality of life: “physical health, psychological state, level of independence, social relationships, personal beliefs and their relationships to salient features of the environment” (3).
The third domain, ‘level of independence’, is of particular significance in relation to disabled and chronically ill people. In the WHOQOL User Manual, pages 60-61 are dedicated to an explanation of the individual facets of quality of life within this domain. In the explanation of facet 9, ‘Mobility’, it is stated that having to depend on another person for one’s mobility is thought to lower one’s quality of life (60). Facet 10, ‘Activities of Daily Living’, involves an evaluation of a person’s ability to independently perform ‘usual’ everyday tasks (61), again under the assumption that depending on another person to do these tasks lowers one’s quality of life . The assumptions about quality of life inherent to facet 11, ‘Dependence on medication or treatments’, are immediately evident (61). All of these facets involve an assessment of one’s quality of life that is not necessarily concerned with one’s medical or physical reality, but rather one’s status as a dependent within society.
The tendency of biomedical experts to provide guidance on the basis of quality of life, rather than well-being, initially appears to be an issue of phrasing. However, using the phrase ‘quality of life’ means that not only a person’s projected well-being, but also predictions of the kind of life a person will lead, are involved in an assessment of whether or not it is ethical to ‘allow’ life. The facet of ‘mobility’ does not evaluate an individual’s quality of life on the basis of “impairment” in the sense associated with physical well-being, but rather if that person is independently mobile (WHOQOL 2012, 60).
The conflation of ‘well-being’ and ‘quality of life’ was not explicitly elaborated on by Mills (2017), but she does note that: “[…] concerns about biological normality are made inextricable from concerns about ways of living well” (291), as a part of her argument that norms of health become associated with a particular lifestyle. Arguably, the practice of incorporating assessments of one’s health and one’s ability to lead a particular, normative lifestyle into a singular evaluative criterion, ‘quality of life’, is a compelling reason for this association. This is not to say that those who are unable to live independently do, in fact, experience a high quality of life. However, low quality of life, to the extent that it could constitute an ethical obligation to ‘disallow’ it is not an intrinsic feature of dependence; it is the feature of a society that devalues life as a dependant.
The United Kingdom is an exemplar case of such a society. The government of the UK has recently proposed a policy whereby disabled, chronically ill and mentally ill individuals who depend on benefits will have their benefits cut by £4,680 a year if they do not look for remote work (Open Access Government 2023). This policy is openly hostile towards those who are not currently able to work because of their health, and places individuals who were already experiencing financial insecurity in an incredibly difficult position; perhaps an impossible position. It is a biopolitical strategy to attempt to increase productivity, by making an ethopolitical claim that it is a “citizen’s duty” to work, and that working is expected as part of a normal lifestyle.
Statistically-derived norms, as Mills (2017) emphasises, create an association between fitting a particular norm of health and living a particular kind of life (290). For prospective parents who are aware of the connection between dependency on the basis of disability/chronic illness and a low quality of life, the question of whether their offspring will be able to be independent becomes a part of an overall consideration about their offspring’s quality of life. The issue is not simply the health concerns associated with an individual’s disabilities or chronic illnesses, but whether they can have a high enough quality of life within a society that devalues dependence to an extent that causes additional suffering. Prospective parents with a disability or chronic illness understand this connection, not because they have been made aware of this connection due to the pastoral guidance of a biomedical professional, but because they have likely experienced it themselves.
Facet 12, within the ‘level of independence’ domain of the WHOQOL, is highly indicative of the fact that human life that is capable of work is valued more highly. This facet concerns ‘Working capacity’. The explanation for this facet is as follows:
This facet examines a person’s use of his or her energy for work. “Work” is defined as any major activity in which the person is engaged. Major activities might include paid work, unpaid work, voluntary community work, full-time study, care of children and household duties. Because such questions refer to these possible types of major activities, the facet focuses on a person’s ability to perform work, regardless of the type of work. (WHOQOL 2012, 61)
On the basis of this quality of life assessment, if a person is unable to work, their quality of life would be evaluated more negatively than that of a person who is able to work. Given the hostility of society towards those who cannot work, it is no wonder that an inability to work is counted among health issues, psychological issues and physical insecurity as factors that can depreciate an individual’s quality of life. One can imagine that in a world in which an inability to work is accommodated for, disabled, chronically ill people and carriers could be more optimistic about the quality of life experienced by their potential offspring.
It could be that some readers have thus far interpreted this essay as an anticapitalist critique, but this is not the case; ableism has existed for far longer than capitalism. This essay is as much a critique of contemporary capitalist societies as it is a critique of the Ancient Spartans, who bathed newborn male babies in pure wine to test whether they could grow into strong warriors, and killed the babies whose constitutions could not handle this (Penrose 2015, 510). Indeed, an anecdote from Herodotus about two Spartan men who were temporarily blinded by the same condition, one of whom went into battle anyway and died, and another who asked not to fight and was excluded as a coward (2015, 512), is almost reminiscent of the UK government’s policy that disabled and chronically people should “find work anyway” or suffer the consequences. Disability/chronic illness activism is necessarily anti-capitalist, since it advocates for those who do not labour, but we must not assume that anti-capitalism is inherently anti-ableist. I hope to have adequately demonstrated that ableist rhetoric is entrenched not only in our political systems but in conventional morality, down to the level of our individual reproductive choices. Regardless of whether or not we live within a capitalist system, the quality of life of disabled and chronically ill people will continue to influence people’s reproductive decisions.
Moralistic hand-wringing about ‘quality of life’ is ableist and unproductive if it is not accompanied by attempts to actively improve the quality of life of currently-living disabled and chronically ill people. Disability and chronic illness are not immutable. In spite of many attempts in the past and present to prevent disabled and chronically ill life through influencing the population’s reproductive choices, disability and chronic illness will continue to occur spontaneously. As a person living with fibromyalgia (a chronic pain disorder) for a decade as of the date of this publication, I can attest to the fact that able-bodiedness is far more precarious than most of us are willing to accept. Even for those readers who do not develop a disability or chronic illness in their lifetime, those lucky enough to reach old age will experience the realities of life as a dependent individual.
It is therefore in our best interests to maintain a society that guarantees a positive quality of life for disabled and chronically ill people, but it is as if, having observed our current quality of life, our ethopolitical responsibility has become preventing future disabled or chronically life rather than engaging in activism and societal change on the behalf of future disabled or chronically ill life. One is left to wonder who benefits from discourse that on the one hand encourages the prevention of disability and chronic illness (in other words, the prevention of disabled and chronically ill people), and on the other actively makes the world more hostile for disabled and chronically ill people. It is certainly not disabled or chronically ill people themselves.
Conclusion
This essay set out to examine the effects of biopolitical strategies on the reproductive choices of disabled and chronically ill people, and the carriers of genetic conditions. I have argued that the reproductive choices of disabled/chronically ill people and carriers are shaped by biopolitical policies and practices, and that these in turn are informed by ethopolitical discourse about ill-health and suffering. A biopolitical analysis of the discourse, policies, technologies and practices associated with reproduction shows that at every level, disabled and chronically ill people and carriers are influenced by authorities and institutions. In the case of carriers, the ethopolitics of reproduction may indeed be exercised on the level of pastoral guidance and abstract ethical equations, as Rose (2001) argues. However, in the case of those who are disabled or chronically ill themselves, their reproductive decisions are influenced by biopolitical strategies that affect the lives of disabled and chronically ill people at large.
Furthermore, biopolitical policies that reduce the quality of life for disabled and chronically ill people, such as the one proposed by the UK Government (Open Access Government 2023) not only control how people live, but control who gets to live. The knowledge that life – or rather, the current way of living – is hostile towards dependent individuals influences conceptions about quality of life, creating an ethopolitical component to individuals’ reproductive practices. Disabled and chronically ill people experience this hostility firsthand. If they do make the choice to reproduce, they are more likely to be offered prenatal testing, even if it produces additional risks for the foetus, because life as a disabled and chronically ill person is devalued as a result of the quality of life they experience.
The biopolitical strategies at play on the levels of discourse, policies and technologies, both on the level of biopolitical management of disabled/chronically ill people and the ethopolitical management of the reproductive choices of disabled people and carriers, promote a self-sustaining, able-bodied and independent population. It is indeed the case that dependent individuals experience a lower quality of life as a result of the ableist society they are born into. Having explored the reasons for the lower quality of life associated with disability and chronic illness, many of which are societal rather than inherent to disabilities and chronic illnesses themselves, it is apparent that positive societal change would likely influence the reproductive choices of disabled and chronically ill people, and carriers of genetic conditions. Notably, making an ethical argument in favour of improving the quality of life of disabled and chronically ill individuals by accommodating us within society, as opposed to making an ethical argument in favour of preventing our lives, is the road less travelled.
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[1] Henceforth, I will refer to people who carry genes for genetic conditions as ‘carriers’.
[2] Mills uses the word ‘women’, but it is more prudent to avoid using gendered language in this instance, as this argument is chiefly concerned with the potential for pregnancy rather than gender identity.
[3] Amniocentesis involves removing amniotic fluid and cells from the uterus. The procedure is sometimes done to test the genes of the developing foetus, or diagnose a foetal infection (Mayo Clinic 2022).