Bioethics

Genetics, Ethics and Disability

Genetics and Deaf Children – Friend or Foe?

A Presentation to the National Deaf Children’s Society Annual Conference, 24 June 2005


Ethics is the study of moral conduct – in this particular instance we are looking at the study of moral conduct in genetics.

Human rights are a moral code by which states should support the right of their citizens to life, equality, freedom and dignity.

It would seem axiomatic that therefore the ethics of genetics must be based on human rights.

However, we have a problem with regard to disability.  Society has treated disabled people as being less than human, as being so different that we do not have the same responses to our humanity that everyone else has and our human rights are systematically and universally violated.

Historically, disabled people have faced enforced sterilisation, pre-natal termination, infanticide, euthanasia and wholesale elimination. 

This historic treatment of disabled people forms the link between genetics and eugenics and we have mounting evidence that little has changed. 

DAA’s worldwide database of human rights violations records, for the UK, that 10% of the cases are violations against the right to life and 43% are cases of degrading and inhuman treatment.

We are fast learning from this sort of evidence that non-discrimination legislation may change the way society is run and built but that our fundamental rights ‘to be born equal in freedom and dignity’ are in serious jeopardy. 

We know that it is the loss of those fundamental rights and freedoms which are our greatest barriers to leading full and participating lives and it is the eugenic approaches to bioethics that are the greatest threat for ensuring that this situation does not improve.

Discrimination

While there are, and will be, substantial benefits from medical research, scientific and technical, progress in these areas often carries with it new, subtle but pervasive forms of discrimination against disabled people. 

One example is the rationing of health care services in relation to quality of life assessments which all too frequently undervalue disabled people’s lives and thereby discriminate against them – it is just these fears that led Burke to go to the courts to ensure he got treatment to ensure he lived when he could no longer speak. 

And it is just that right that the General Medical Council are now appealing against, with government backing on the grounds of cost and an impossible burden on the NHS.

In health care there is not only the withdrawal of treatment that is discriminatory but the imposition of treatment that people don’t want because they like themselves as they are – treatment, that in the eyes of the medical profession and the rest of society, will turn us into acceptable non-disabled people – treatments such as cochlear implants, ECT, drug regimes with personality changing effects, electrodes on every muscle to make you walk, endless, day-long exercises for children to make them get around without a wheelchair. 

But as Mike Oliver, Professor of Social Sciences said at his inaugural lecture ‘What’s so wonderful about walking?’ if you have an accessible society and an electric wheelchair. 

Indeed what is so wonderful about hearing - if you can speak to everyone in sign language and they can speak to you (as in Martha’s Vineyard)?

What’s so wonderful about seeing? – If you can access all information as you want and when you want it.

For not one single one of us is able to do everything – we all have serious limitations in terms of being able to carry out our lives, we all have enormous dependency on other people, on how society is ordered – on the provision of social services.

Should we make value judgements about one ability over another?  – Should we say that being able to play football is more worthwhile than being able to cook for a family of five, seven days a week, 52 weeks a year?

If we do make those sorts of value judgements surely it is the same as saying that someone is of more value because of their gender or because of the colour of their skin.  In fact judgements about the value of difference is outright discrimination.

And yet in genetics these lines of value are being drawn everyday:

•    By the ethics committees that formulate guidance and regulation,

•    By the scientists and professionals who make stark choices of which embryo to keep and which to throw away, choices of which gene is impaired and which is not,

•    By the general public who know that if you give birth to a disabled child or have a disabled member of your family that society will look on you with horror and subject you to isolation and poverty. 

There will be no recognition of your inherent worth

– No recognition of the love you can give or the love that you can receive

– No recognition of the particular sensitivities that grow when you live a life of discrimination

– No recognition of your intrinsic humanity

– No recognition that the language you speak may not be verbal but is just as powerful.  

Another area of potential discrimination is the promises made for genetic-based medical solutions, either in terms of pre-natal detection, termination or cure.

These solutions appear attractive to many people fearful of the consequences of having to care for a disabled child or adult in an uncaring and unsupportive society. 

However, these solutions reinforce the idea that disability is essentially a medical problem and reinforce the supposed negative consequences of disabling impairments, the contribution of disabled people as part of a diverse society and our opportunities for full equality.

The emphasis on the medical model of disability and quality of life assessments are further weakening the arguments for funding proper social support for disabled people to live fully and equally in their communities. 

Whether deaf people consider themselves to be disabled people or not – attitudes are the same as the ones I have enumerated and the results are the same:
Deaf people are a drain on society, cannot be communicated with and must always be in separate groups or families away from the verbal communities.

And in the new genetic sciences deafness is seen as a serious genetic disadvantage and one that should be eliminated.   

Many prominent ethicists argue that eugenics is not a reflection of the exterminations of the Nazi concentration camps but about promoting a healthy nation – a positive approach to a good and flourishing society. 

They argue that suffering and impairment should be avoided at all costs and that they are only being concerned and humane in their approach, but

Who decides what suffering is? 

Who decides what is an impaired gene?

To what degree should society dictate who we are and what we will become? 

Do human rights not say very clearly that every single one of us has the right to be a person and that governments have a duty to protect that right to personhood?


So what are we going to do about all this?

First and foremost government and ethics committees have to reinforce the necessity to keep decisions regarding genetics within human rights, non-discriminatory framework – UNESCO has provided us with a good declaration on the subject – that declaration needs to be implemented.

Disabled people must be everywhere in the debates – not just the odd one or two who may only be able to speak from their own experience, but disabled people who are used to working in a human rights framework for all disabled people, regardless of impairment.

Penalties for violations of rights against disabled people must be the same as violations against non-disabled people.

Information on the true status of disabled people and the negative impacts and barriers imposed by society on them must be part of general knowledge. 

Once society gets a glimpse of the degradation and isolation of most disabled people’s lives, then they will align with us to ensure social change. 

Difference is not bad – difference is the most important factor in our lives and should be celebrated.

 

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