Can we use the notion of normality in genetic selection without discriminating?

Abstract

With the hope of somehow contributing to the ongoing discussion on the topic, this paper is loosely based on the debate that emerged from Rob Sparrow's article “Should human beings have sex? Sexual dimorphism and human enhancement” (The American Journal of Bioethics, 10, 3–12, 2010). Building on some of his arguments, my claim is that we should not refer to gender when discussing not-yet-born agents. More broadly still, my intention is to provide a further analysis of the intersection of the concepts of gender and autonomy. I will begin by briefly highlighting Sparrow's article and critiques, with special emphasis on the poststructuralist attack. In doing so, I will consider the differences between structuralism and poststructuralism in relation to this debate. Subsequently, I will draw a parallel between Judith Butler's notion of the performativity of gender, sex and Ronald Dworkin's distinction between zoe and bios. The next move will then be to re-divert attention to the crucial role that health plays in the discussion (as instrumental to the “normal” and autonomous functioning of the body), suggesting that one of the substantial differences between human enhancers and non-enhancers is the ranking that health has in their corresponding scale of values. Setting the bar for how an organism functions “normally” will be the last step necessary to create the basis for my main claim: building on Butler's description of the singular agent in relation to others, I will suggest Jürgen Habermas and Onora O'Neill as credible and valuable expansions of a position willing to reconcile individual and relational autonomy, supporting this final claim with the words of Immanuel Kant. If we aim to use genetic engineering and preimplantation genetic diagnosis (PGD) to prevent unhealthy children from being born – as I shall state we should – we can use this notion of normality in a way that will be accepted also by those who are historically critical of such a way of conceptualising a human being, only if we understand the parallel need for society to shift to a more inclusive and shared definition of autonomy.

Keywords:

• preimplantation genetic diagnosis (PGD)
• gender
• autonomy
• normality
• human enhancement
• genetic selection
• discrimination

Sparrow's reductio ad absurdum

With his reductio ad absurdum argument, Sparrow seeks to unmask the limits of human enhancement (HE) by affirming that (thanks to modern biotechnologies) we should choose to select the sex of our children; and more specifically, we should opt for baby girls mainly because they live longer and can give birth. His argument met with two main criticisms: one moved by those in favour of HE, who affirm that their theory does not call for sex selection, and the other put forward by poststructuralists, who claim that the non-use of the term “gender” is inappropriate, as is the conceptualisation of “dimorphism”. Here, I will only focus on the second criticism. Partially allowing the point, in criticising Sparrow's avoidance to refer to gender, in his article “This is What Happens When You Forget About Gender”, Dan O'Connor pointed out that even if we allow for distinction and independence between gender and sex we would still have a problem. He wrote:

But if gender is a construct that is given to sexed bodies, what, then, is this “sex” of which Sparrow speaks, this “normal male” and “normal female”? [ … ] “The normal male bodies and normal female bodies” upon which Sparrow insists are only “normal” because a (socially constructed, historically contingent) discourse of gender has decided that they are so. (O'Connor, 2010, p. 28)

Given that Sparrow constructed this dimorphism as a function of the reductio, and that he has already replied to this objection, instead of considering the distinction between the two sexes, I shall focus on how we can reach a definition of “normality” that is more acceptable to poststructuralists; a version of the notion that will not deny the possibility of different forms of normality (i.e. transgender is normal) and yet condemn some forms of being “abnormal” in the light of their unhealthy dimension.

However, a clarification related to both Sparrow's work and this paper should be made: bioethics emerged as a discipline inspired by analytic philosophy. As a result, when writing in a prose aimed at tackling issues central to this branch of philosophy, it is to be expected that we are forced into a standard analytical dialectic that is not in line with poststructuralist positions, but certain dynamics are inescapable. I am aware that such critics would affirm that the very way I express and label these interactions are reinforcements of the status quo, but I am also conscious of the fact that a common language is necessary if we aim to create a productive dialogue. Perhaps it would be useful to remember that even Judith Butler has often been criticised for not being sufficiently clear, or – in more crude terms – of not actually saying anything. For this reason, I consider the critique moved by O'Connor to Sparrow – at least partially – to be misplaced, but nonetheless worthy of attention. By intentionally avoiding to refer to gender in his framing of sexual dimorphism, Sparrow does not limit the number of possible “gender performativities” from the given two options. On the contrary, he uses language in a way that refrains from evaluating the performativity of the agent and loading her down with pre-established political schemes. Sparrow presents us with a classification of human beings focused on their “objective” sexual dimension, without adding any layer derived from the use of such a body by the agent in question. It is in this very choice that he voluntarily refrains from giving relevance to the gender, and he does so with the intention of focusing more on what we define as normal – in a strict sexual sense – when considering the health status of a choice. Of course, the notion that we can provide “pre-existing factors” (such as normality) troubles O'Connor and poststructuralists more in general, and that is why I will next highlight some fundamental differences between structuralism and poststructuralism in order to later attempt to reconcile them.

Structuralists and poststructuralists

In open contrast with preceding theories, structuralism views a reduction in the importance of the agent, as she is not seen to describe a purely distinctive point of view. The author is deeply rooted in her socio-cultural context, and this results in very little room for changes and challenges to the status quo. This is why, poststructuralism, led by Foucault and Derrida among others, wanted to challenge this approach, by attacking the standard binary thinking of both Marxism (bourgeoisie–workers) and structuralism (nature–culture). However, Butler (1990) says:

Gender is not to culture as sex is to nature; gender is also the discursive/cultural means by which “sexed nature” or “a natural sex” is produced and established as “prediscursive”, prior to culture, a politically neutral surface on which culture acts. (p. 11)

When Butler refers to the blurriness of gender, she claims that gender as such is not a given and immutable truth, it constantly changes and gets reaffirmed in the process. I am aware that the discussion becomes very political when issues of gender relate to those already existent, because it deals with real cases of discrimination. As a result, it is not casual that such fights for justice were classified as biopolitical, as they directly derive their existence from the interconnection between the political and biological spheres focusing on why we do not permit an individual to be accepted as different. However, I think that the tension lies in the fact that – while defending the right of each individual to be respected in themselves once alive – there are more doubts over the assessment of the status of foetuses. When doing that, we can – and probably should – use a more “scientific terminology” (i.e. sex), precisely to discharge it of its political weight. Let me put it this way: if we assume that plants have sexuality (a common way of classifying their reproductive system), we can refer to them as being female or male and yet we do not have to consider the issue related to gender – as I think it is reasonable to affirm that they do not have one. There are no doubts that this specific way of being “scientific” in evaluating humans is the result of an equally specific (possibly chauvinistic) way of perceiving and valuing the world around us, but it is nonetheless still true that certain features are classifiable, and I want to suggest that in order to define “normal human bodies” we should refer to their health. In other words, while I agree that all existing individuals should be respected for their intrinsic value, and therefore be considered “normal human bodies”, the same evaluation is not possible for foetuses since the absence of the cultural dimension puts more weight on the natural one (Garasic, 2012).¹ Of course, such a distinction is a difficult one to argue for, and in support of such a claim, I want to draw a parallelism with the method used by Ronald Dworkin (1994) in his book Life's Dominion. In discussing the notion of sanctity of life in relation to abortion, he describes two dimensions to define life: the zoe and the bios. To apply the dichotomy used earlier, we could say that the zoe is the natural dimension of life (and therefore refers to sex), whereas the bios is the cultural one (which instead refers to gender). This distinction, however, when having “restoring the patient's health” as the ultimate goal, continues to raise many questions (including the controversial therapy-enhancement one), but – in relation to the analysis considered here – the most notable result is that it obviously presumes an ideal “normal” standard that poststructuralists tend to refuse. Therefore, what is normality? In the next section, I will address the use of this term in bioethical contexts.

Normality in bioethics

The notion of normality can be viewed from two different angles: one medical and the other societal. In recent decades we have become increasingly aware of the negative influences that bigotry and prejudice have had on shaping the latter and, as a result, we might now be tempted to increasingly undermine the legitimacy of the former as well. However, we should refrain from such a temptation since progress has been made in the conceptualisation of what is normal within the medical sphere, as a result of its re-elaboration in symbiosis with society. Think of the changes that have occurred in Western societies regarding homosexuality for instance: from being regarded as a mental illness in the 1970s, this way of intending to live one's sexuality has increasingly been accepted as “normal”. Certainly, this overlapping of normality and health will not be sufficient to convince more radical poststructuralists, but to deny medical facts altogether seems to me to be unjustifiable and extreme. A good example of this was the analysis of the power relationships involved in issues concerning mental health done by Thomas Szasz and the anti-psychiatric movement; which sadly did not alter the fact that some people do suffer from mental illnesses. Similarly, I think we might have reached a point where our understanding of the misuses and abuses of gender and sexuality is sufficient to rebuild an alternative interaction between individuals, rather than continuing to criticise their use in an endless vortex of deconstruction. I think that it is time to move from a critical phase of medicalisation of morality to a more constructive depoliticisation of medicine (Foucault, 2003).² In order to achieve this goal, I think it is necessary to place health in the centre of the picture, using it also to determine in which way the suggested approach for using prenatal testing and preimplantation genetic diagnosis (PGD) differs from that of the defenders of HE. As argued by others elsewhere, liberal eugenics claims to be pluralist and to give priority to individual liberty, but it seems as though our society is in fact driven by what Gregor Wolbring (2008) refers to as “Ableism”: whereby we give importance to a set of values that see an intrinsic positivity in being fast, tall, intelligent and beautiful. While the first two features listed do not leave much room for interpretation (there is little doubt that Usain Bolt is faster than me and that I am not as tall as Yao Ming), the latter two are already less clearly definable in “absolute” terms. If asked, I would have some difficulty in assessing who was the most intelligent between Aristotle and Plato, or the most beautiful between Monica Bellucci and Naomi Watts. This aspect deserves attention. If we combine this awareness of the HE trend with the equally important aspect that according to human enhancers, health is not a value in itself, but is only functional in permitting the existence of the best possible option, I define at least one crucial distinction between the way of characterising “normal” in HE advocates' accounts and in Sparrow's. In fact, it seems as though for supporters of HE the value of being fast is more important than that of being healthy. An approach that does not seem to me consistent with affirming that each individual has a value in herself or that leaves much room for a truly pluralistic approach. This shows the a priori condition that sees the individual subordinated to a pre-established set of values that make a life “extraordinary good”. The bar is set before interaction with the world and it is not influenced by it. To use Butlerian terminology, there is no performativity. Thus, going back to Butler, the question is: how can we reconcile the acceptance of diversities and – at the same time – be ready to judge some foetuses as normal and others as not? One way of trying to answer questions such as this would be to reconsider the notion of autonomy, as centred not upon the individual alone, but rather as the agent of a community. Of course, this approach could easily be twisted into a social imposition, but I would like to point out that Butler herself, in a very interesting discussion with Sunaura Taylor over the “myth of normality”, agrees in affirming that we are all dependent upon others. It is in some way in our nature not to be self-sufficient. To be normal is to be not self-sufficient. In their discussion, Taylor characterises the two labels currently used in disability studies to classify differently abled people: impairment and disability. Impairment is the medical label, whereas disability has a cultural dimension. After all, it seems that binary thinking is still very present in our society and perhaps we should reconsider the reasons it was there in the first place and readjust it accordingly. To do so, I will once again look to Butler's work.

Sara Salih (2002) writes:

Actually, Butler is not claiming that gender is a performance, and she distinguishes between performance and performativity [ … ] whereas performance presupposes a preexisting subject, performativity contests the very notion of the subject (GP: 33). [ … ] How is linguistic performativity connected to gender? Towards the beginning of Gender Trouble Butler states that “[w]ithin the inherited discourse of the metaphysics of substance, gender proves to be performative, that is, constituting the identity it is purported to be” (GT: 24–5). Gender is an act that brings into being what it names: in this context, a “masculine” man or a “feminine” woman. Gender identities are constructed and constituted by language, which means that there is no gender identity that precedes language. If you like, it is not that an identity “does” discourse or language, but the other way around – language and discourse “do” gender. There is no “I” outside language since identity is a signifying practice, and culturally intelligible subjects are the effects rather than the causes of discourses that conceal their workings (GT: 145). It is in this sense that gender identity is performative. (p. 56)

It seems thus, that we are moving back to a more structuralist conception of the agent. My claim is that if there is no “I” to guide us in shaping some directives, we can – and should – move towards a “We”. In the next section of this paper, a closer look at the Kantian approach should help us to disentangle this impasse.

The Kantian approach

Habermas’ (2003) much criticised argument against liberal eugenics in his book The Future of Human Nature, was based on the idea that – by applying any form of genetic enhancement to our offspring – the autonomy of those yet-to-be-born individuals would be undermined.

Although extremely valuable, in relation to the present analysis, this affirmation could push us towards drawing a very strict parallelism between this version of autonomy, sex and gender that we must resist. We should, of course, defend the possibility of a not-yet-born human to be able to preserve her or his autonomy (i.e. avoiding therefore genetic changes that will, in one way or another, undermine their independent choices during their lives), but by so doing, we fail to concede a self-standing status to this notion detached from its performative context. If we were to consider autonomy as an immutable feature, then we could reach a scientifically objective definition of what boundaries are not to be crossed to ensure fairness. In other words, we could affirm that – as long as we are capable of not damaging the sexual biology of the individual – we would be acting correctly. However, this technical approach misses out on what it fully means to be a human being. To reach that level of acceptability of the notion of normality in genetic selection without discrimination, we should aim to agree on objective reference points which can be used as guidelines, and this should not occur by analysing every single case and contrasting it to a static, detached version of autonomy. Rather, we should evaluate its content in a dynamic manner that would engage with the surrounding community to produce a truly acceptable version of what is normal. Therefore, autonomy in this context does not overlap with only sex or gender, but is a synthesis of the two. To support my argument, it is worth mentioning that Habermas was aware that his claim was often the subject of misuse so he addressed the issue by clarifying that, in fact, he considers autonomy more a socially related characteristic than part of the human beings themselves. He writes:

The concept of humanity obliges us to take up the “we”-perspective from which we perceive one another as members of an inclusive community no person is excluded from. [ … ] Therefore, the universality of moral norms ensuring equal treatment for all cannot be an abstract one; it has to be sensitive to the individual situations and life-projects of every single person. (Habermas, 2003, p. 56)

In the end, autonomy might not be as individually centred as it often is in bioethics. In support of such a claim, it is interesting to consider what Onora O'Neill (2002) wrote in her book Autonomy and Trust in Bioethics: “The Categorical Imperative, in all its versions, including the Formula of Autonomy, articulates this double modal structure of the supreme principle of reason for the domain of action: we must act on principles others can follow” (p. 92). This idea was later reinforced in the book written in collaboration with Neil Manson, Rethinking Informed Consent in Bioethics:

Three conceptions of autonomy are commonly invoked and commonly confused in writing on bioethics. One of them, the Kantian conception of principled autonomy, can be set aside. It is often mentioned with respect, but hardly ever discussed in writing on medical and research ethics. Those who invoke Kant's legacy and authority almost invariably overlook the fact that Kant used the term autonomy to refer not to a characteristic of the individuals,³ but to the formal properties of principles of action that can serve for all, and in particular to the combination of law-like form and universal form. (Manson & O'Neill, 2007, p. 17)

We decide therefore to include others in the assessment of the moral permissibility of an action. In so doing, we move the decisional power from the “I” to the “We”. In support of these less individually centred versions of how to experience the world, and how to interact with it, here is a very enlightening passage from Kant (1991) himself:

But if we assume a plan of nature, we have grounds for greater hopes. For such a plan opens up the comforting prospect of a future in which we are shown from afar how the human race eventually works its way upward to a situation in which all germs implanted by nature can be developed fully, and in which man's destiny can be fulfilled here on earth. Such a justification of nature – or rather perhaps of providence – is no mean motive for adopting a particular point of view in considering the world. For what is the use of lauding and holding up for contemplation the glory and wisdom of creation in the non-rational sphere of nature, if the history of mankind, the very part of this great display of supreme wisdom which contains the purpose of all the rest, is to remain a constant reproach to everything else? (pp. 52–53)

Let us thus assume that such a plan is in place, and that our duty is to let its contents unfold without prejudice or self-imposed limitations that would only produce unnecessary pain. After all, if we are moved by a truly Kantian approach, we can indeed use the notion of normality in genetic selection without discriminating. In the same way that we can accept some kind of limitation to the obsessive individually centred version of autonomy, because of its reference to a principled autonomy guided by the community, so too can we rely on the same community to assess what can reasonably be described as “normal” in a medical context.

Conclusion

Starting off with the use of Sparrow's instructive work on gender discrimination and PGD, I have attempted to draw a philosophical web capable of rescuing us from falling into the realm of hypocrisy. Certainly, the fight against discrimination does not necessarily have to be abandoned when considering technological innovations, but we should realise that it is not to anyone's advantage to mislead the focus of our arguments. In conclusion, therefore, it is important not to discriminate between genders when they are present in the picture, but in order to escape from the re-creation of an indoctrinated power structure focused on one kind of terminology, rather than on the human being's specific experience of existence, it is equally important to accept that in certain cases limiting the spectrum of options for future human beings is morally permissible and probably advisable. That is so because – when referring to a medical condition – we can objectively assess what is normal and what we, as a society, should be aiming to get future generations to be or achieve. The key aspect that we have inherited from Kant – and that I have tried to articulate through all the thinkers considered here – is that the assessment of such normality should derive from a communal enterprise that would thus legitimise the use of the notion in the first place. The use of normality as a term of reference is often criticised because in the course of history it has been undeniably linked to discrimination, ostracism and, most of all, power struggles. If we are ready to embrace a model of autonomy that moves away from such an individually centred version of autonomy, we must be capable of stripping the notion of normality of its political charge and giving it back to humanity in its purest and most valuable form.

Funding

This work is part of my Golda Meir Postodoctoral Fellowship.

Notes

1. This binary thinking is not strictly necessary, but I consider it a valuable tool for building a bridge between analytic and continental philosophy which this project wants to achieve. In relation to this point, see Garasic (2012).

2. Here I would like to underline that even though I consider critiques such as Foucault (2003), there is the need for society to redirect itself towards a more neutral way of perceiving and describing medicine. The fact that some mistakes were made in the past, should not push us to escape the undeniable validity of medical evidence and objective progress in medicine.

3. As quoted in the book: Hill (1992) and O'Neill (2004).