Challenges, Questions, Answers: Thinking about Disability and Genetics

Tom Shakespeare raises some questions about disability and bioethics.

Mapping the Territory

The challenge I offer the SOF network is situated in the context of four different issues. In this article, I will first map that territory, then ask what a non-realist approach to theology might offer as an ethical or spiritual response, and then end with some key questions to which I hope answers may begin to be found.

The first development is the transformation that the disability rights movement (politics) and disability studies (academic) have made to our understandings of disability and difference. Broadly, disability has usually been understood in terms of deficit – things that individual bodies or minds cannot do, or can only do badly. Words like 'invalid' and 'retarded' and 'crippled' and 'deaf and dumb' connote some of the negative values that have surrounded disability.

Since the late sixties, disabled people themselves have challenged this pathological approach, often labelled 'the medical model'. Campaigners have claimed that disability is like race, gender and sexuality: in other words, a social issue, not a personal problem. Attention has focused on the barriers that exclude people, not the individual medical diagnoses that people might have. This attention to the ways in which society disables brings to mind Hebrews 12.13: 'Make a level path for my feet, so that the lame be not disabled'. In other words, do not add to the difficulties which people with impairments already have, by socially and physically excluding them.

This revolutionary approach to disability has not been all good. In my view, identity politics can have negative aspects – it sometimes becomes inward-looking, fosters self-segregation, imposes a single identity and voice on what is usually a plurality of perspectives and experiences. I worry that disability cannot be celebrated so easily as being a woman, or gay, or from a particular ethnic tradition: for some people, impairment is tragic or damaging. Maybe the analogy is not with gender, race, sexuality but should be with poverty: we want to respect people in poverty, but we also want to remove poverty and prevent it occurring in future.

The second development is the extraordinary developments in biomedicine that have occurred in recent decades, particularly the sequencing of the Human Genome, advances in stem cell research, and new possibilities for diagnosing, and ultimately treating, disease. In some ways, genetic research dissolves the minority group approach of the disability movement: it shows we all carry up to 100 genetic mutations in our genome, we are all impaired. Genetics also reminds us that we are unequal: some people have better genes than others, translating into better health, higher intelligence, more talent. Unequal outcomes are not just a matter of unequal opportunities.

Biomedicine is an example of what has been called the 'Baconian project', after the seventeenth-century scientist and thinker Francis Bacon. The term refers to the ambition to use science to eliminate suffering and maximise choice, to rid humans of the burden of fate. The question is, how far does this go? How do we decide, as a society, about the costs and benefits of particular technologies? What choices should we make in our own lives?

Third, bioethics is the philosophical and social response to the challenge of biomedicine. In Britain, the field is dominated by analytical philosophy, which draws on the thinking of utilitarianism and Kantian deontology. The contemporary bioethicist looks at problems posed by genetics or other biotechnologies in a rational, logical and consistent way. She, or more often he, would tend to dismiss emotional or faith-based perspectives, looking for evidence that a particular innovation would lead to harm to anyone. Notions such as 'it's unnatural' or 'we are playing god' would be given short shrift. The 'bioethics toolkit' deploys four key principles: beneficence (do good), non-maleficence (do no harm), justice and autonomy. In practice, it is usually autonomy that prevails: individuals should be able to do what they like, as long as they do not harm others, for example the idea of reproductive autonomy.

A Finnish colleague once suggested that bioethics sees disability purely in terms of killing: abortion issues at the beginning of life, assisted suicide and euthanasia issues at the end of life. Disability activists have been enraged by the arguments of prominent bioethicists such as Peter Singer and John Harris, who see disability as a wholly negative experience best avoided. More widely, bioethics is ill equipped to deal with limitations of the 'Baconian project', because it draws on the same intellectual foundations of the Enlightenment. Robert Song argues that this is what hampers Jurgen Habermas' recent attempt to develop a critique of biomedicine. There is a need to find another way of thinking about nature, including our human nature, which goes beyond trying to subdue and control it. Also, John H Evans has suggested that the problem with bioethics is that it explores the means, not the ultimate ends. He thinks this is because there is no agreement on what our goals should be, in contemporary pluralist society. Therefore we spend our time arguing about procedural issues, not questions of ultimate value.

Fourth, Christian theology has been generally conservative in its response to biomedical advances. Christians are less negative about suffering than utilitarian bioethicists, and more concerned about the value of the embryo (life begins at conception), and life in general. The notion of humans being created in God's image can translate into a reluctance to manipulate or improve on the species. This could be contrasted to a Jewish theological approach, based on tikkun, the idea of humanity as unfinished, and humans as co-creators with God: this partly explains the importance of science and medicine in Jewish culture, and the strength of biomedical research in Israel. Judaism does not tend to have concerns about the early embryo (up to 40 days the embryo is 'as water').

On disability, Christianity has mixed messages: disabled people are objects of charity, or of healing missions, but they are also valued because of equal worth in the eyes of God. For example, the L'Arche communities inspired by Jean Vanier have enabled people with intellectual impairment to live alongside non-disabled people in the community. The visually impaired theologian John Hull writes that Jesus 'first accepts the infirmities of humanity by healing them, but finally he accepts the infirmities of humanity by participating in them, by becoming one of them'. He quotes Isaiah 53:3: 'He was despised, shunned by all, pain-racked and afflicted by disease.' Disabled theologian Nancy Eiseland, who died in 2009, wrote of Christ as a person with physical impairment in The Disabled God (2004), where she challenges the church to remove barriers: “People with disabilities will accept no less than the church's acknowledgement of us as historical actors and theological subjects and its active engagement in eliminating stigmatising social practices and theological orientations from its midst.” (p.67)

What would a Non-realist Position look like?

I am not a theologian, not a scientist and not a philosopher. But I am interested in coming to an ethical and religious understanding of contemporary disability and biomedicine. My trajectory echoes many in the SOF movement: brought up an Anglican, lost my faith at University, came to Quakerism at the age of 30. I read and valued The Sea of Faith, read the non-realist Quaker John McMurray (1891 – 1976), and would identify myself as a religious humanist, although not entirely sure what the implications of that are.

Probably the best account of the implications of this position for bioethics is Richard Holloway's Godless Morality, where he argues: “It is better to leave God out of the moral debate and find good human reasons for supporting the system or approach we advocate, without having recourse to divinely clinching arguments.” I agree. But I do wonder then, what is the added value of the 'religious' part of religious humanist? Is there a difference between the perspective or values of the non-realist religious perspective and the secular bioethics perspective?

What appeals to me in secular bioethics is that it is not woolly. It is rational, accessible and offers clear answers. But I recognise that it does so by eliminating all that is complicated about human social life: relationships, feelings, emotions. For that reason, I prefer alternative bioethics, arising from feminist approaches or from Aristotelian virtue ethics, which emphasises living virtuously and trying to promote human flourishing. But virtue ethics does not help when faced with a specific dilemma around a genetic test or a new technology.

Asking the Questions

I realise that we can't answer any question definitively, and that it's better to accept the diversity of opinion. But I do feel we need to develop a platform, a place from which to begin to answer questions. Bioethicists like John Harris are always ready to provide answers, and so are religious fundamentalists. Therefore it behoves us to think about the issues and come up with some broad ideas for answers. Questions which I do not feel contemporary bioethics answers well, questions which arise from my own research and experience, include the following:

On prenatal diagnosis and selective termination: does it matter if we eliminate disability? Screening is currently incomplete and imperfect, so this is a hypothetical question, but it is interesting to think about whether disability is part of natural diversity, and therefore valuable, or whether it is something which we can and should prevent, to improve human wellbeing. We were pleased to eliminate smallpox… Would it matter if there were no more people with Down's syndrome in the population?

On pre-implantation genetic diagnosis (embryo selection): lay people often respond to the idea of choosing embryos to be free of disease, or to be the preferred sex, or even to have other preferred characteristics, by saying 'Children should be a gift not a commodity'. What, in a post-religious world, does this mean, and does it capture something important about parenting, something which our emphasis on choice and control ignores?

On enhancement of human characteristics, through genetics or pharmaceuticals or nanotechnology: how far should this go? We compensate people for the social lottery (welfare state, redistributive taxation). Should we now compensate people for the natural lottery (the genes you are born with)? Jackie Leach Scully has distinguished between nudges (small improvements, like helping everyone to live to 80) and transformations (living to 150). The former might be desirable, the latter unacceptable. But add together the nudges and you get a transformation.

I want to find answers to these questions which are more humane than those provided by bioethics, and less conservative than those provided by most orthodox theology. I want to ensure that disabled people are included and respected, but I also want to improve health and prevent disease.

Final thoughts

Many of our immediate reactions to biomedical innovations can be summed up in terms of the 'yuck factor': we disapprove of that with which we are unfamiliar. So, in time, humans have found railways, cars, birth control, heart transplants and assisted conception to be unacceptable, unnatural and even 'playing God'. Now, we accept all of these as beneficial and progressive. So we should be cautious about our immediate reactions, and ask some more rigorous questions about who might be harmed, and what of value might be lost.

Personally, I do not object to any of the biomedical advances I have described, but I do worry about our overall direction of travel. Like US ethicist Dan Callahan, I believe that the exponential growth of medicine cannot go on: it is unaffordable on a global scale, and it prevents us coming to terms with the limitations of our embodiment, and finding meaning in the predicament we face: being born, being mortal, being frail. Robert Song asks how can sickness be integrated into a morally valuable life which has come to terms with finitude, and how are we to care for each other, as vulnerable human beings: 'our greatest task is to learn our own humanity'.

Finally, perhaps it is relevant to cite Luke 14: 12-24, the parable of the Great Feast. When the rich man's invitations to prominent people are rejected, he tells his servants to invite others to his table: 'Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.' Perhaps that says something important about the values which should predominate in our discussions.

Tom Shakespeare is a Research Fellow at Newcastle University. His publications include Disability Rights and Wrongs (Routledge, London 2006).

Further reading