It's A Sin? Genetics and Disabled People

Statement by Agnes Fletcher at CAHGE press conference, 14/6/00

"Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children". So said Bob Edwards, world-renowned embryologist and IVF pioneer (Sunday Times, 4 July 1999).

This view is reminiscent of medieval religious ideas of disability being punishment for "the sins of the fathers". Talking about the genetic "quality control" of children as a new public responsibility is reminiscent of ideas prevalent in the 1930s about threats to the population stock from those classed as "imbeciles", criminals or alcoholics. What do such ideas about the supposed new responsibilities arising from genetic knowledge mean for disabled people and society as a whole?

Genetics is a fast-paced field of scientific development. Disabled people are involved by default because our impairments are used as justification for enormous resources being used for research. In fact, the big bucks may reside more in the increasingly consumer-led approach to reproduction - "positive eugenics" - and the tests to screen out individuals with "bad genes" - "negative eugenics" - rather than in effective treatments for people with quite rare genetic conditions.

In addition, "new hope" for disabled people is accompanied by the danger of disabled people and others experiencing increased discrimination in employment, insurance, healthcare provision and education. This is where disabled people feel a responsibility to raise the alarm. There shouldn't be unfair discrimination in our health service, in employment, in insurance - but there is. For years, disabled people have been turned down for jobs that they were qualified for, denied or charged high premiums for insurance for spurious reasons. The discrimination that disabled people have faced and continue to face should act as a warning about what may come.

Many in society see disability as a purely medical problem - and genetics offers new "empirical" evidence to bolster this view, alongside the promise of potential miraculous solutions. For those of us who see disability as a political and human rights issue, the "cure" for the negative experiences that many disabled people face lies elsewhere - in according value to people&rsquos lives, to ensuring that society is accessible and open to the needs, rights and talents of disabled people. It does not mean a rejection of good quality healthcare, available on an equal basis according to need not resources or judgements about "quality of life".

Among the potential dangers of developments are:

• Genetic discrimination - discrimination on the basis of someone's genetic identity, whether relating to a condition that currently effects an individual, one that will develop later or a predisposition which may or may not result in a condition. This discrimination is most likely to occur in employment, insurance and healthcare provision. There may be an increasing impact on personal relations, in terms of sharing of genetic information that affects family members, choice of partner, decisions about reproduction, etc.
• Genetic determinism - the belief that who we are, how we look and behave, and what our futures hold is determined entirely by our genes.
• Geneticisation of differences - expanding from diagnosis of what we might now term impairments, aspects of the differences among humans (such as height, weight, personality) may be geneticised and medicalised. This may lead to an increase in stigma, blame and personal anxiety and guilt.
• Increase in pre-implantation diagnosis, whereby embryos are assessed for disease and the healthiest implanted. Currently, this is legally used to avoid single gene disorders and those affecting one sex only. This may spread to encompass "desirable attributes" as well as what is now termed disease. Some disabled people object to these procedures, viewing the creation of human life followed by its immediate termination on grounds of disability, even at embryo stage, as discriminatory and a comment on the value of disabled children and adults with the conditions concerned.
• Increase in pre-natal screening and testing. Screening at a population level is currently available for genetic and non-genetic impairments. There are around 100 conditions that can be tested for in utero. It is likely that as well as conditions such as Down's syndrome, cystic fibrosis and muscular dystrophy, predisposition to conditions that may or will develop later in life will be detectable. The question for public authorities will be whether it is cost-effective to screen at a population level for such things, whether to leave such tests to the commercial sector, or whether to limit their availability. The expense of testing older women for Down's syndrome is justified in terms of the healthcare costs saved if such a foetus is terminated. (For example, Wald, N.J. et al, BMJ, 1992, 305, 391-4. "Ante-natal maternal serum screening for Down's Syndrome: Results of a demonstration project".)

Some disabled people who uphold women's rights to make choices in relation to continuing with pregnancies regard selective termination on grounds of impairment - legal until birth if defined as "serious handicap" - discriminatory. They believe there is pressure within reproductive services towards testing and termination ('The stress of tests in pregnancy', National Childbirth Trust, 1997) and that many medical professionals believe that the only "choice" is to terminate, with access to testing sometimes limited to those who agree to terminate. They also see the poverty and lack of social support for disabled people as in effect limiting women's choices to continue with pregnancies. This is borne out by RADAR's 1999 survey, 'Genes Are Us? Attitudes to Genetics and Disability' (a summary of results is attached).

While it is easy to believe that "the public" will consider anything in pursuit of "perfect babies", there is evidence that public attitudes towards disability are changing and that people have a healthy scepticism about science that operates without social and ethical checks. A 1997 Wellcome Trust poll asked a number of questions, including:

Is human genetics research going too far?

37% said yes

32% said no

30% didn't know.

Should there be more controls on how the research is used?

74% said yes

7% said no

18% didn't know.

And the Pro-Choice Forum's survey of young people aged 16-24 revealed strong support for disabled people's rights in the context of abortion:

"Abortion for foetal abnormality was thought by most students to be understandable in some cases, although most thought it would be wrong to have an abortion purely because the child was disabled . . . Students often suggested that disability could have positive as well as negative aspects . . . Students perceived disability to be an attribute or form of identity, akin to gender or skin colour, rather than as a disease or illness. Since the issue of disability was therefore thought of as a rights rather than a health issue, concern was expressed that abortion for abnormality [sic] could be, or at least could encourage, discrimination against disabled people." - From Summary of findings, 'Young people's attitudes to abortion for foetal abnormality: report of the findings of a study looking at school and university students' opinions', published by the Pro-Choice Forum, 1998.

Agnes Fletcher
Head of Communications
RADAR
12 City Forum
250 City Road
London EC1V 8AF
Tel: 020 7250 3222

RADAR (the Royal Association for Disability and Rehabilitation) is a national disability organisation working with and on behalf of disabled people irrespective of their particular type of impairment. The organisations has around 500 self-governing organisations in membership, the majority of which are controlled by disabled people, whose interests we seek to represent in all aspects of our work.

'Genes Are Us? Attitudes to Genetics and Disability', A RADAR Survey

Summary of Most Significant Findings

General feelings about developments in genetics

53% feel a mixture of hopes and fears (238¹)

22% feel hopeful (100)

15% feel worried (68)

8% feel horrified (35)

Will developments in genetics improve or worsen disabled people's lives?

73% feel they will bring benefits and problems (328)

14% feel they will only improve things (64)

9% feel they will only make things worse (42)

3% feel they will make no difference (13)

Should there be stronger regulation of genetic technologies?

94% say yes (422)

Genetic Discrimination

85% believe that disability discrimination law should outlaw unfair discrimination on the basis of genes (384)

Human Cloning

76% believe that the current ban on human cloning should remain (344)

Should it be illegal for employers to have access to the results of genetic tests?

91% say yes (411)

Should it be illegal for insurers to have access to the results of genetic tests?

90% say yes (406)

Conflicting Positions?

23% believe that abortion is entirely a woman's choice and that her reasons are no one else's business and that abortion should be available at any time during pregnancy (105). However, 53% (56 of 105) of this group also consider that at least one of a range of suggested reasons for abortion relating to impairment should be illegal.

9% believe that all abortions should be illegal, except in cases of rape (41).

However, 44% (18 of 41) of this group also consider that at least one of a range of suggested reasons for abortion relating to impairment should be legal.

Reasons for terminating pregnancies

72% believethat termination for a correctable genetic condition, such as cleft palate or near-sightedness should be illegal (326)

56% believe that termination because of predicted deafness should be illegal (252)

53% believe that termination because of predicted blindness should be illegal (238)

53% believe that termination because of a painful genetic condition predicted to onset at age 40 should be illegal (238)

37% believe that termination because of predicted Down's syndrome should be illegal (166)

36% believe that a termination because the foetus is not expected to live beyond the age of five should be legal (165)

36% believe that a termination because the foetus is not expected to live beyond the age of five should be illegal (163)

29% believe that there should be the same time limit for almost every abortion, unless it can be proved that the baby is likely to die within a few days of birth (132). [At present, while 24 weeks is the usual time limit, an abortion can take place at any time during pregnancy if the foetus is thought to have a "serious handicap", the term used in the legislation.]

Genetic Counselling

61% of those who have had genetic counselling say it was helpful and supportive (44 of 72)

21% say it made them feel bad about themselves and having children (15 of 72)

18% say it was of no use (13 of 72)

About the Respondents

452 people responded to the survey

57% identify themselves as disabled (256)

24% indicate that their condition is, or is probably, genetic (108)

20% indicate that their condition might be genetic - they are not sure (83)

17% indicate that their condition has no genetic element (78)²

20% identify themselves as non-disabled (90)

19% identify themselves as close relatives of disabled people (84)

Gender

71% of respondents are female (320)

27% of respondents are male (124)

2% did not give this information (8)
 

1 Numbers given in brackets are the number of respondents (from the total of 452) indicating agreement with a statement or answering the relevant part of a question. Percentages are rounded up or down but can be re-calculated by dividing the numbers in brackets by 452 and then multiplying by 100.

2 Some people do not choose to define themselves as disabled but indicate that a genetic condition is relevant to their lives, which is why the percentages in this section exceed the total percentage identifying themselves as disabled. This may be because they do not choose the term "disabled" to describe themselves, because they are carriers of conditions or because they have close relatives with genetic conditions.