chapter 4

chapter 4 - UEi’lEi’ElfilfiH 14:43 Ellib4lotlllj42...

Info iconThis preview shows pages 1–9. Sign up to view the full content.

View Full Document Right Arrow Icon
Background image of page 1

Info iconThis preview has intentionally blurred sections. Sign up to view the full version.

View Full DocumentRight Arrow Icon
Background image of page 2
Background image of page 3

Info iconThis preview has intentionally blurred sections. Sign up to view the full version.

View Full DocumentRight Arrow Icon
Background image of page 4
Background image of page 5

Info iconThis preview has intentionally blurred sections. Sign up to view the full version.

View Full DocumentRight Arrow Icon
Background image of page 6
Background image of page 7

Info iconThis preview has intentionally blurred sections. Sign up to view the full version.

View Full DocumentRight Arrow Icon
Background image of page 8
Background image of page 9
This is the end of the preview. Sign up to access the rest of the document.

Unformatted text preview: UEi’lEi’ElfilfiH 14:43 Ellib4lotlllj42 HLIMtfltN HtHUlUt‘j I-‘tfltisil: UEHllfi Controlling life? Colin Goble The genetic revolution In this chapterI shall locus on developments in genetic medicine and their implications for disabled people. First; I shall look at some of the broad social issues relating to the so~called ‘genetic revolution”. The basics of the science itself will then be outlined as a basis for understanding its medical appli- cations. The ‘curative’ and ’preventive' approaches to genetic medicine will then he outlined. Brief reference to the history of scientific techniques applied to heredity and disability will be made in order to place issues and concerns about its current usage in context. Current concerns about the use of, and social meaning attached to prenatal screening for genetic ’abnorrnah itv’ will then be explored. Finally I shall loolc at a case study of 'Joanne' and her knowledge of the situation of people with Huntington’s disease in order to gain some insight into the experience of living with genetic disease in our society. We are currently living in an era of biotechnological revolution rivalling that of information technology in its potential economic and cultural impact. in areas like agriculture and medicine extravagant claims are being made for genetic technologies with the alleged potential to save humanity from star- vation and evolutionary meltdown. We are, we are told, on the verge of taking control from nature of our own evolutionary destiny (Silver 1998). For many people however, far from invoking utopian daydreams. such claims raise deep fears about the use and control of such technologies, particularly in the hands of transnational corporations working to aggressive, profit-oriented agendas in a deregulated, globalized economy (Ho 1999). Get- tainly, there is an eerie sense that we have heard similar claims before from scientists and politicians eager to associate themselves With cutting-edge technology. It is not so long ago that claims of universal social and economic benefit were being made for nuclear technology. Nowr in the post Three Mile UEi’lEi’L’lfilfitfl 14:43 ‘:|';ll:i4l:itll';l4'.«_’ HLIMi'l'iN titHUithti l-‘i'i'ilsil: lil'di'rllcl 46 Values and ideologies Island, Chernt‘ibvl and Sellafield era, such claims loolt almost ianciful, and - reputation of the science that made them is tarnished. A new public set-3] cism is apparent. Across Europe we have rccentiy seen a consumer react- against genetically modified food which has made the UK and some oil countries an effective no-go zone (at present} for the companies producing A key part in this consumer reaction has been a lack of trust in the evidei produced to back the technology, anti a deep-seated unease that commercir driven science is meSsing with things that are fundamental to our biologi and ecological well-being. I One area where there appears to be less concern lioivever, is in the medi application of genetic technology. Medicine, despite recent public imt troubles, is Still held in esteem surpassing that of other sectors of app]. science in our society. This is enhanced when medical science malces clai that include the potential eradication of genetic disease. I shall go on to exa ine such claims later, but first it may be helpful to give a brief outline of so] of the basic principles of genetics in order to inform subsequent discussion Genes are most easily understood as the biochemical instructions govei int;r the development and functioning of cells. As a British Medical Associati (1995) publication puts it, genes provide the instructions for our development from a fertilised egg (oocyte) to a fully grown adult and continue, throughout our lives, tr. provide the information necessary for everyday maintenance and func- tioning of our bodies. Genes are sections of DNA (deoxyribonucleic acid) which are contained in the chromosomes passed on from our parents at conception. (British Medical Association 1998: 28) Genes have been likened to the information imprinted on cassette tape wh a recording is made. Apart from sperm or egg (so-called ‘germ‘) cells that co rain 23 chromosomes, human cells contain 46 chromosomes. 23 inherit from each parent. Except in the case of identical twins, everyone inherit: unique mix of genetic material from their parents. The biological sex of . individual is decided by their inheritance of X and Y chromosomes from thi parents. Mothers always contribute an X ch'ron‘iosome, but fathers can co tribute either an X (for a girl) or a Y (for a boy). The biochemical processes involved in genetic inheritance are complex, all errors in transmission are not infrequent. Often these errors, described in bi logical jargon as ’rnutations’, have little or no visible impact, and thl accumulated effects are. in fact, a vital part of the mechanism by whii species evolve. However some mutations produce dramatic effects. The range from the immediately fatal, resulting usually in miscarriage, to tho that produca ‘atypical’ physiological development. These effects also ran; Widely. from the relatively minor and invisible, lilre colour blindness, to t] highly visible, like extremes in physical stature, to those which are threate: ing to survival. such as cystic fibrosis. The degree of impairment experienci as a re5ult is also highly variable, with individuals with similar genetic profile UEr’lEr’ElfilfiH 14:43 Ellib4lotlllj42 HLIMr'fliN HtHVlUt‘d l-‘fltlsil: lilfilr'rllil Controlling llfi’? 47 Such as an extra twenty-first chromosome in people with Down’s syndrome, varying tremendously in both physiological and cognitive capacities. In western societies these ’atypicalitics’ have often been pathologieed and result in negatively valued characteristics, such as intellectual, physical or sensory impairment. The promise of genetic medicine is that it will give us the ability to ’s lect' ose characteristics we value, and “select out' those characu renstics we do not. It is this emphasis on selection of c aracterisrics on which {Wm science in medicine is primarily based. This is being pur- sued in two ways. The first is 'gene therapies”, that is the attempt to manipu- {are genetic material in order to control the expression oi' characteristics. This gpprofll'h attemptsto prevent negative, or disease generating, characteristics and to enhance positive, or health-promoting, ones. This can be called the ‘curative’ approach. The second approach lllvulmi‘dfil‘ltifyiflg genetic ’mark- ers' related to disorders so that women at 's i carrying a genetically ‘abnormal’ infant can be identified and screened. The claim made here is that womenfparents can then malice the choice about whether to continue with the pregnancy, or whether to terminate it. This is the ‘preventive' approach. There is widespread conSensus that these goals of medicine are good in that they will work to the benefit of individuals and society by ensuring that more people have “desirable”, and fewer people “undesirable characteristics. At wot-l; here is an implicit acceptance of Darwinian evolutionary theory with its central tenet of ‘natural selection”. This holds that species evolve to ‘fit' their environment as individuals displaying adaptive characteristics tend to survive and breed more successfully than those that do not. Some have argued that the success of human beings in conquering infectious disease has meant that this selective pressure is no longer able to function. The claim is, that for humanity to retain its ’fitness' as a species, we need to take on this selective role ourselves, and that genetic technology will facilitate this process (Silver 1998). This raises many questions about the extent to which children will be 'designed’ to fit dominant social and cultural conceptions of desirability, and also about who will be able to access such technology. Other issues have been raised about the control and privacy of genetic information. These concerns tend to be countered by geneticists and the biotechnology industry, however. by reference to potential benefits, including the eradication of impairment. It is to such claims that we will now turn. Questions for diseussion 1 Why are some people concerned about the development of bio- technology for commercial gain? How might some sections of society use Darwinian evolutionary __ theory to explain their own social position? Why are some genetically related characteristics regarded as desirable whilst others are regarded as forms of disease? UEi’lEi’ElfilfiH 14:43 Ellib4htlllj42 r fi-thr‘sfl politicians, not scientists. who were responsible for the mass murder of dis- ' ._,._.._.__ R “3 LW‘HW ahlecl people. In this View, the abuses of the Nazis are put down to ‘one man ‘ HLIMtfltN til-.H'U'lUt‘d as Values and ideologies Gent-stir: medicine and disability Medical attempts to eradicate disability are not new. The historic rise of scien- : rific knowledge lent new power to ancient prejudices by creating rational»: arguments, based on statistical evidence, to underpin social policy and pracv‘ tice towards disabled people (Davis l997). Eugenics emerged in nineteenth- century Britain based on Darwinian theory which fitted W611 With the sell-perceptions of social elites who saw in it both a justification of their own. " social'and political status, and a rationale for the control of groups whom they”. perceived to be a threat. Social Darwinists coined the phrase “survival of the ‘ fittest” and helped develop influential policies that resulted in the Segregation " and sterilization of many disabled people {Ryan and Thomas 1987; Russell 1993). The most notorious programme-was that pursued by the Nazis. They, I} exterminated tens of thousands of disabled people, having designated them ’life unworthy of life”. This programme served as the experimental forerunner for the racial genocide of Jewsland other ‘non-Aryan’ groups (Weale 2001). Revulsion at the Nazi Holocaust made eugenicarguments anathema for a time after the Second World War, but the rise of modern genetics helped put it back on the agenda. One argument used by modern-day eugenicists to dis- tance themselves from policies and practices of previous eras is that it was and his odious politics’ (Keeley 2000: 7). From this perspective eugenics is a ’benign' science and it is the political contest that explains its oppressive use. This is questionable however. The overwhelming evidence is that it was medical scientists who carried out the euthanasia programme in Nazi Ger“ many. Furthermore, the social and political context which allerch the Nazi euthanasia policy to function with little opposition was one generated by I influential scientists cspounding negative views of disability and disabled I people {Russell 1998). Such negativity persists. and draws new strength from the ideas of sociobiology and evolutionary psychology. Like eugenics before them, these theories walk the thin line between scientific theory and social ideology. But let us now examine the way genetic medicine is actually approaching disability. The curative approach proposes that in mapping the human genome and “cracking the genetic code’ we shall be able to manipulate genes to achieve therapeutic ends, including the ’curing’ of genetic disease and impairment. However, there are serious question marks emerging over the capacity of geneticscience to actually deliver on this promise. Kevles (1999: 298} points out that, ’lilse intelligence, most human characteristics are polygenic. and therefore not even genetically understood, let. alone subject to manipulation’. Genetics based on such a determinist paradigm appears to have sold itself on the promise oi What Ho (1999: 48) calls a “science: that fails the reality test'. Thus the preventive approach, using prenatal screening (FNS) has taken precedence. Lilte the science. the ethics and politics here are complex l-‘tfltlsil: Ubi’llfi UEKlEKEUUH 14:43 Hdb4bflld42 HUMQN HtHUiUtH Controlling life? 4'9 however. This was revealed in a RADAR survey which canvassed the views of disabled people and their families about genetic medicine (Royal Association for Disability and Rehabilitation (RADAR) 1999). Some who were opposed to abortion generally. for instance, argued that it might be justifiable in the case of impairment detected by PNS procedures. Others who expressed disquiet about PNS were nonetheless anxious that such disquiet should not be used to Challenge a women’s right to choose abortion. The complex interplay between the issues of abortion and PNS has been identified as an issue, therefore, which requires caution and sensitivity (Shakespeare 1999). The main tear expressed in the RADAR survey, however, was that the increased use of PNS Will be used to question the quality of life oi disabled people. There is a fear that the selection process in PNS will be used to pro- mote discrimination on the basis of genetic make-up. There is also the belief that the claim of medicine to be offering parents a choice is disingenuous given the negativity with which disability is often perceived by the medical profession, and the pressure which is consequently applied to parents to abort in the event of a positive test. This is a point raised by the Down's Syndrome Association in its response to the assertion by a leading embryologist that THE will malte it a ‘sin' for parents to have a disabled child Rogers 1999). The high moralione ta en here is reminiscent of Social Darwinist eugenicists in the early twentieth century, and is a good example of the way in Which scientific opinion shapes the social context in which disability exists. The impact of such views, from such sources, is to create a hostile social environment for, and to undermine the cultural status of, disabled people (Wolbring 2001). The negative view of disability widely held in western culture is based, it is currently being argued, on two erroneous assumptions. First, that disability equals a tragic and disrupted state, and second, that it is automatically associ- ated with a life of isolation, poverty and pOWerlessness (Asch 2001). The origin of these views lies primarily in medical conceptions of disability as equivalent to disease and a departure from a desired state of ‘health'. Disabil- ity is, according to these assumptions, something that no one in their right mind would choose for themselves or their child, and it is indeed a condition from which one should actively want to escape. This logic underpins medical, legal and bioethical support for euthanasia of disabled adults, infants and foetuses. it is this perspective that has been challenged most strongly by the disability rights movement. They have argued that such a view ignores crucial social dimensions of disability, and particularly the [act that, if disabled people do indeed live lives characterized by isolation, poverty and powerlessness. then that is more to do with political, economic and cultural than biological factors (Morris 1991 ). Disabled people may well be driven to a despair that makes them wish to end their own lives, not as a result of anything inherent in their biological or genetic malterup, but as a result of social discrimination, prejudice and inadequate, inappropriate and oppressive service systems. Let us now tool: at this issue in relation to Huntington’s disease. which is a rare genetic condition. Ffifit Ubflfl UEi’lEKEUUH 14:43 H'elbfilbtil'el42 HLIMtl'tN til-.H'Uiiilz‘d l-‘ti'tisil: El Hllfi 50 Values and ideologies Questions for discussion 1 How might'present-day genetic scientists defend themselves against accusations of resurrecting “old style’ eugenics? Is the attempt to eradicate impairment using genetic approaches realistic? @What effect might the widespread use of prenatal screening have for disabled people in society? Coping with genetic impairment: Huntington’s disease My source for this case study is Joanne. a person with wide experience of at involvement with Huntington’s disease, in both a personal and profession capacity, As such she has been particularly Well placed to observe the inte face between sociEty, human services and people With Huntington’s diseas Joanne is a false name used to maintain anonymity. Huntington's disease is a so—called single gene‘ condition. The name cont from George Huntington, a doctor who described a collection of sympton and characteristics which includes progressive motor and cognitive impai ment and personality changes. In the latter stages physical and cognith impairment become progressively more profound, culminating in deati During the 10—20 years of its usual duration, between 20 per cent and 30 pi cent of brain weight is lost, and it has been described as programmed brai death’ (Raslco arid Downes 1995: 240). Average age of onset is 38, although varies between 25 and 70. Onset below that age is rare. although Joanr suggests it is commoner than believed. but is often missed, or mistaken it other things, including delinquency. A good deal of Joanne’s account of the issues facing people with Huntini ton’s dis-ease related to testing for the presence of the indicative genet market. This was identified in 1993, and the following year saw the deveiol merit of a test to identify it. The presence of the genetic marker is a 100 pt cent certain indicator that the individual will be affected, although there is 11 way of predicting when. Prenatal screening is available from ten weeks. wit the same pressures to abort in the case of a positive test that have been notc elsewhere, being apparent in Joanne’s experience. Otherwise testing will usr ally be performed only on adults over the age of 18, it being argued the children are not able to handle diagnosis. In the case of adults there are frequently waiting periods of months whicl Joanne relates, are highly stressful. Either a neurologist or a psychiatrist USL‘ ally oversees the procedure. This reflects, in .loanne’s view, an ambiguity i the medical reitponse to the condition. There is some controversy as t whether Huntington’s disease should be treated as an irreversible degenera live neurological condition, or a psychiatric condition managed by psyche active medications and psychological support. This situation is exacerbated i: UEKlEKEUUH 14:43 Hdb4bflld42 HUMQN HtHUiUtH Controlling life? 51 mm- when: diagnosis has not been confirmed, but an individual is instead referred to psychiatric services for aggressive behaviour. Aggression is. in manner; experience. one of the early symptoms of brain changes produced by mg. condition, and is frequently not recognized for what it is. Joanne relates many experiences of individuals who fall foul of the law, anti whose family life and social networks are severely disrupted before diagnosis is name. Th: development of testing was. in Joanna's view. a positive thing. Most people in her experience want to know in order to be able to shape their lives. and also the lives of their families. The issues and experiences surrounding testing are highly complex and varied however. Many people have. for instance. experienced pa rents whose personality changes and aggression have ghaped their views negatively. Theyargue that a positive test should result either in a decision to abort, or not to have children. on the grounds that we should not put someone through this experience if we do not have to. Others argue that, even with a positive test. quality of life is what matters, and that it should still be possible to live a happy and fulfilling life up to. and even during the onset and progression of impairment. Joanne was quite scathing about claims of possible cures. The term she used to describe this was ‘selling dreams’. In particular. she argued that this ernphaw sis in thinking diverts funds away from research into other responses to Hunt- ington’s disease. particularly supporting individuals and their families attempting to live with its effects. Support services for people and families living with Huntington‘s disease are. in Joanne's words ‘appalling’. Services seem to be effectively immobilized by a kind of ’therapeutic nihilism’. Once a positive test result is received ser- vice input seems to evaporate. Often. no professional group or agency appears willing to talte responsibility, with the result that support is often patchy. inconsistent and sometimes. absent altogether. This picture appears to be particularly true for those in the early stages of the disease. In J oanne‘s experi- ence. the behavioural problems in this phase are often more problematic and demanding than the physiological impairments which follow, and yet it is only when the physical impairment manifests itself that support is given. and this is often barely sufficient. The picture painted here suggests that the nega- tive medical prognosis attached to people with Huntington’s disease results in them anti their families virtually being ’written oli'. Joanne recalls being told by one doctor ’What do you expect? They’ve got Huntington's disease!‘ it appears then that disabled people's fears about the negative impact of genetic testing and diagnosis on their quality of life are well founded. For people living with genetically related impairments that negative impact is already apparent. It also appears that the dominance of the bio-reductionist paradigm in health care leads to an ov'erernphasis on high-tech genetic - research at the expense of research into ways in which people and their families living with these conditions can be supported to achieve and main- tain a good quality of life. The experience of people with Huntington’s disease, and conditions lilte it offers challenges to the disabled people's movement too. The social model of disability on which the movement has based its challenge to society about the Ffifit UHKlU UEHlEHEUUH 14:43 ElijhfilhtilljfilE HLIMtfliN til-.H'U'lUt‘d I-‘fltisil: Uhlrrllfi 52 Values and ideologies nature of disability has challenged the view that impairment is necessarily ‘tragic' in its effects and impact on people’s lives {French and Swain 2002). A5. pointed out earlier, for many disabled people ‘sufiering’ and 'tragedy' are the result of socially imposed barriers and prejudices rather than anything inher‘ 2 ent in their biological makeup. I would argue that Joanne’s account strongly" suggests that degenerative conditions lilte Huntington's disease can have a per- sonally tragic aspect that needs to be acknowledged in order to embrace the experience of people who live With them. To ignore this is to ignore people's lived experience, and thus to alienate them and render them irrelevant. ‘ The actual benefits of genetic medicine for disabled people are, at least at present. and possibly for the foreseeable future. hard to see. The main effect has been to resurrect, and give new sophistication and moral authority to the‘ eugenic project that has always simmered just below the surface of medical ' science's view of disability. Perhaps the best response to this perspective is the. promotion of an 'ecological’ view of disability which places it at the heart of the social world where it is actually experienced by people in their relation- ships and interactions with other people and the material environment, rather than maintaining it as purely the concern of biomedicine and its obses- sion with seeking cures. Disability, genetically related or otherwise. is in this view, not so much an aberration to be eradicated, but a part of the diversity of the human condition. Like our genes. it is actually part of our individual and collective human heritage. Questions for discussion @Why might people living with the risk of developing Huntington’s disease prefer to ltnow for certain if they Will develop it? @How might services [or people with huntington’s cliSeast: be organ- ized to better support them and their families? (39 Is it better to spend money on looking for cures for genetic disease, or to spend it helping people live with it? Debate the proposition: Life is always worth living whatever the level of impairment. The following quotations may provide you with a start- ing point: Selective abortion is morally problematic . . . First selective abortion expresses negative or discriminatory attitudes not merely 313011”: a disabling trait, but about those who carry it. Second it signals an intolerance of diversity not merely in the society but in the family, and ultimately it could harm parental attitudes towards children. (Parens and Asch 2000: 13) nee-a: UEe’lEa’ElfilfiH 14:43 Ellib4btillj42 HLIMn'fltN til-.H'U'lUlzlj l-‘fltlsil: llfia‘rllfi Controlling life? 5 3 The background to my decision is also my belief that. all other things equal, disability (specifically, a disability for which I would consider an abortion) would make life more difficult for my child. my family and the. This is not the same thing as saying it wouldbe an ovemhelming burden or make a fulfilling life impossible. It d‘ees not mean that my child. my family or I could not handle the difficulties. It means only that z'fl have a choice, i would prefer to avoid them for all of our sakes. And I believe I do have a choice. (Baily 2000: 6'7, emphasis in original) mother reading ssch, A. (2001) Disability, bioethics and human rights. in 6.1.. Albrecht, KD. Seelman and M. Bury (eds) Handbook oth'saln'lity Studies. London; Sage. galley, R. (1996) Prenatal testing and the prevention of impairment: a woman's right to Cl'lOOSE? in J. Morris (ed) Encounters with Strangers: Feminism and Disability. London: The Women’s Press. ’al'tfl'ls, E. and Asch, A. (eds) {2000) Prenatal Tbslr'ng and Disability Rights. Washington. DC: Georgetown University Press. Voibring, G. (2001) Where do we draw the line? Surviving eugenics in a technological world, in M. Priestley (ed) Dimbz'll'ty and the Life Course: Global Perspedz'ves. Cambridge: Cambridge University Press. ...
View Full Document

This note was uploaded on 04/14/2008 for the course RHB 493 taught by Professor Larson during the Spring '08 term at SFASU.

Page1 / 9

chapter 4 - UEi’lEi’ElfilfiH 14:43 Ellib4lotlllj42...

This preview shows document pages 1 - 9. Sign up to view the full document.

View Full Document Right Arrow Icon
Ask a homework question - tutors are online