Archives for the month of: March, 2012

Ronald Dworkin points to a distinction between reasons people wish for their lives to go one way or another. One set of reasons he calls experiential preferences and the other set of reasons are critical interests. Experiential preferences are those things that we find enjoyable in life. They also can entail things that are painful or bad experiences but, within limits, these kinds of experiences do not make our whole life worse. Critical interests, Dworkin asserts, are those that people find are essential to their understanding of what constitutes a good life.

Experiential interests are not frivolous and critical interests profound, Dworkin states, it is just that critical interests are important to the aspirations of our lives. In his view, we need to establish the distinction between these two interests in order to understand how people should be treated. It is not difficult to understand why we care about our experiential interests as it is natural to prefer pleasure to pain. But it is more difficult to understand why people should care about their critical interests. Therefore, Dworkin contends that we need an intellectual explanation of how our critical interests connect with the larger beliefs that we have about life.

Critical interests are bound in what Dworkin calls the integrity of our lives; the capacity we have to autonomously structure our lives to contain the right experiences and achievements. Integrity is similar to dignity, which is why we think someone has little self-respect if they have acted perversely for gain or the avoidance of trouble. It is important to understand that one may be mistaken in the decisions one makes for understanding the idea of critical interests. For Dworkin, this is essential to the basic distinction between critical and experiential interests.

In using such a distinction to consider whether death is in the best interests for someone with dementia, Dworkin thinks that we must consider what was important in that person’s life; what was their life narrative. Someone who has dementia may have more to gain through pleasant experience for several years before they die a natural death and to kill oneself through the fear of a lack of experiential interests is probably wrong.  However, Dworkin argues, it is critical interests that matter when we wish to consider how one might die. If people think that they will be living in degrading conditions through being fully dependent then they may wish to choose to die. Therefore Dworkin asserts that these decisions based upon their critical interests before they were afflicted should be taken into account when considering how an advanced dementia patient may not wish to live.

Rebecca Dresser objects to Dworkin’s differentiation between experiential and critical interests on the grounds that it is possible that people do not draw a sharp line between these interests. In the circumstances of dementia, Dresser says, Dworkin fails to consider that critical interests become less important and experiential interests more so, just as they may for people who are brain damaged or intellectually disabled. Dresser states that people who seem happy and contented although they may be suffering from dementia, will experience clear harm from a decision that purports to advance the critical interests that they may no longer care about.

  • Dworkin, Ronald. “Dying and living” in Life’s Dominion: An Argument About Abortion and Euthanasia , Dworkin, Ronald , 1993 , 179-217
  • Dresser, Rebecca. “Dworkin on dementia: Elegant theory, questionable policy” in Bioethics: An anthology , Kuhse, Helga Singer, Peter , 1999 , 312-320
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Lucretius argues that death is nothing to us and we have nothing to fear of it. He asks why we should fear death when we will be no more. Once the chain of our identity has been snapped through death, even if we could be reassembled, we would not be concerned with our previous existence. If we fear that death is full of evil, the self is not in existence to experience it. Another reason why Lucretius contends that men fear death is that the good things in life will come to an end. However, while we sleep we cannot take part in those things and we do not regret it. Therefore, if sleep were to go on for eternity we would not trouble ourselves for these things. Lucretius also contends that if life has been good and we have not wasted it, we should not demand it goes on like an ungrateful guest. If we have wasted our life or it has been full of evil, why would we demand that it continue? We must make way for others, as the old must make way for the new. Lucretius states we do not regret the time before we were born because we cannot remember it. Existence before life is the mirror image of existence after life. Finally, death is inevitable and therefore it is irrational to fear it.

Thomas Nagel objects to Lucretius’ assertions on the grounds that he has made mistaken assumptions. Nagel argues in contrast to Lucretius that death is an evil simply because it deprives us of life. The assumptions, Nagel states, that Lucretius has made are temporal and based on a subject to be harmed. A person can be identified through their history and their possibilities rather than their state at a particular moment. While that person can be located at a particular place and time, if a terrible misfortune befalls them such as acquiring a major brain injury, for Nagel, it is the loss of this person’s possibilities that is the tragedy. This loss of possibility can be the same objection that can be used towards Lucretius’s assertions about death. The other assumption that Nagel states is made by Lucretius is his description of death being a mirror image of the time before one’s birth. For Nagel, although they may both be times when one does not exist, the time after death is the time of which one has been deprived while the time before one’s birth is not a time which one’s subsequent birth prevents one from living. Also, although death is inevitable, Nagel states that one’s existence does not contemplate this but imagines an open-ended possible future and the inevitability of death should not imply that it would not be good to live longer.

  • Lucretius. “Extract” in On the Nature of the Universe , Lucretius; Latham, R. E. , 1951 , 121-129
  • Nagal, Thomas. “Death” Nous , 4:1 , 1970 , 73-80

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Prenatal testing is a form of reproductive technology used to determine the physiological condition of a foetus, particularly with regard to any genetic disability. Physicians claim that such technology allows the parents to make a decision as to whether to continue a pregnancy of not based upon their assessment of the potential value of the child’s life and/or the parents capacity to cope with the outcome. Such a claim is criticised by disability activists as encouraging the abortion of foetuses with disabilities through societal ignorance and implicitly discriminating against existing people with disabilities.  To establish whether it follows that discrimination against disabled people occurs because of prenatal diagnosis this essay will evaluate the arguments of two disability activists, Marsha Saxton and Christopher Newell.

Marsha Saxton, who is disabled with spina bifida, claims that the widespread assumption that the increased use of reproductive technologies, in particular prenatal screening, will reduce the incidence of disability and increase quality of life should be challenged. Saxton asserts that this assumption is based upon such premises that having disabled children is wholly undesirable, and that the quality of life for the disabled is less than that of others. Her argument is based upon current societal attitudes which she states are stereotyped and lacking in knowledge of the disabled[1].

The stereotyping of the disabled, for Saxton, comes from the media. It is a causal argument where society, being oriented toward ideals of beauty, athletic prowess, self-reliance and productivity, causes the concept of disability to trigger fear in society with disabled people reminding able people of their vulnerability. This in turn causes disabled people to be excluded from mainstream society through lack of employment opportunities, second class education, and environmental barriers. Because many disabled people are excluded from the community they become isolated, thus limiting society’s exposure to their life experience. Through limited exposure to disabled people, the fear of parents pregnant with a disabled child is that it will suffer and be a burden. This causes many parents to choose to terminate the life of a foetus with a disability[2]. Is the fear of disability necessarily the cause for parents to terminate a pregnancy after prenatal diagnosis?

Genetic counselling that the parents receive after a positive prenatal diagnosis is supposed to be based upon informed choice, reproductive freedom and non-directiveness. However, informed choice needs to be based on the systematic processing of accurate information. Genetic counsellors have little time to present information to the parents to make such a major life decision. Therefore, they usually present information on the ‘burden’ of the condition, such as its risks and severity and these are all negative terms with little or no emphasis on the positive aspects of having a disabled child[3]. For example, a study of women who were mothers of children with Down’s syndrome or other disabilities asserted their commitment to their child and states how they enriched their lives[4]. This conclusion is substantiated by statistics from Victoria in 1999, a year in which 5550 prenatal tests occurred. 4.4% of these tests had abnormalities and, although abortion rates following positive tests vary, the 1998 Annual Report of the Consultative Council on Obstetric and Paediatric Mortality reported 80% of foetuses with Down’s syndrome were aborted[5]. This data correlates with a British study that is cited in the British Medical Journal, where 81% of foetuses with Down’s syndrome were aborted[6]. Therefore, it can be asserted that a fear of the burden of a particular condition of disability causes the majority of people to abort foetuses with that condition.

Christopher Newell, also a person with disability[7], argues that the use of reproductive technology ‘will perpetuate the oppression and control of people with disability, especially if the knowledge of people with disability is not utilised in bioethical debates’[8]. Newell’s argument is based upon a social constructionist view of disability, but it is also informed by his deeply held religious convictions on abortion and euthanasia[9]. Newell asserts that it is the dominant biomedical view of disability that influences the claim that developments in genetic technology are inherently good because of its capacity to eliminate suffering. Newell challenges this view because it is not informed by those who live with disabilities.

The dominant bioethical view of disability, Newell contends, fails to define ‘disability’ or ‘abnormality’ but objectifies it and treats it as the ‘other’, ignoring its social dimension. He goes on to state that although postmodernism recognizes the social nature of disability and genetics, bioethics has yet to do so. Rather than seeing people with disability as leading inherently low-quality lives and being an economic burden on society, Newell asserts that there should be an economic situation which enables and facilitates people with disability to contribute to society. For Newell, the medical model of disability fails to recognise the contributions that people with disability make to society and negates the existence of many disabled people who are happy and satisfied with their lives. To fortify his argument Newell gives the anecdotal examples of his friend who has Down’s syndrome being happier than many of his academic colleagues, and the disability activist Alison Davies who states: “Despite my disability and the gloomy prediction made by doctors at my birth, I am now leading a very full, happy and satisfying life by any standards. I am most definitely glad to be alive”[10]. Is Newell’s conditional argument that reproductive technology is oppressive and controlling because it is uninformed of the perspectives of people with disability correct?

In Australia, regulation of reproductive technologies is guided by the National Health and Medical Research Council. It recognises the views of disability activists that the practice of selection against disability is discriminatory against those that may have that condition. The outline of guidelines for ethical practice within the area of Prenatal Genetic Diagnosis states:

–          What counts as a serious genetic condition is controversial;

–          there are different perceptions of disability; [and]

–          the practice of selecting against some forms of abnormality may threaten the status of people have that form of abnormality[11].

This seems to negate Newell’s argument that the medical model is uninformed by people with disability. However, these guidelines then go on to state that PGD should not be used for:

–          Prevention of conditions that do not seriously harm the person to be born;

–          selection of the sex of an embryo except to reduce the risk of transmission of a serious genetic condition; or

–          selection in favour of a genetic defect or disability in the person to be born[12].

The restriction on selection in favour of a disability implies that one of the main purposes of genetic testing is to prevent such people being born. NHMRC Guidelines also state that the use of genetic technologies is to include ‘interest in reducing the economic and social costs of caring for the incurable’ and ‘hope for progress in the overall health and fitness of the community’[13]. Therefore, the conclusion can be drawn that, although the medical view may recognise the views of people with disability, it is determined to ignore such views in preference for a utilitarian purpose of the common good.

Are these reproductive technologies discriminatory? Prenatal genetic testing aims to detect major foetal abnormalities and provide prospective parents with alternatives. As Newell contends, the bioethicist Lynn Gillam’s argument that prenatal diagnosis does not inherently discriminate against people with disability fails to take into account that such technology does not apply to all sorts of purposes, such as conditions of skin colour, sex, or any other attribute. Its only purpose is to screen for disability. For Newell, it fails to take into account that, rather than the disabled being seen as leading low-quality lives and being an economic burden, there should be an economic situation which enables and facilitates people with disability to contribute to society. However, this premise is irrelevant to reproductive technology but is in the realm of public policy. The purpose of reproductive technology is to deal with the situation that is the current reality, where people with disabilities still suffer neglect through lack of services, leaving parents and carers to struggle[14]. Both Saxton and Newell concede that a decision to terminate a pregnancy with a disabled foetus may be made on the grounds of the availability of resources and this may be more of a factor than any discriminatory perspective.

Direct discrimination has two features: that it is explicit and intentionally aims to disadvantage a group[15]. Although decisions to selectively abort a child on the grounds that it is disabled may seem discriminatory, because of the lack of societal resources it is understandable that prospective parents may make this choice. Parents may also make a choice to abort a nondisabled child because of lack of resources, and a disabled child needs far more. The decision may be explicit and it may be intentional but it may not be aimed at disadvantaging those who are disabled.

Although people with disabilities may suffer direct discrimination through fear and hostility within the community or oppression through lack of facilities to help them live and work, it should not be found that prenatal testing causes direct discrimination. However, it may cause indirect discrimination through the encouragement of a perception within the community that people with disabilities are a burden. Therefore, Saxton is right to challenge the assumption of a better future population because of prenatal screening but Newell’s conclusion that it is reproductive technology that results in the oppression and control of the disabled is uncertain.

BIBLIOGRAPHY

  1. Altman, Andrew, “Discrimination”, The Stanford Encyclopedia of Philosophy (Spring 2011 Edition), Edward N. Zalta (ed.), Retrieved from: http://plato.stanford.edu/archives/spr2011/entries/discrimination/  on 05/02/2012
  2. Gillam, L., “Prenatal diagnosis and discrimination against the disabled” Journal of Medical Ethics , 25: , 1999 , 163-171
  3. Hume, J., ‘Disability, Feminism and Eugenics: Who has the right to decide who should or should not inhabit the world?’(Paper presented at the Women’s Electoral Lobby National Conference, University of Technology, Sydney , 26 January 1996)
  4. National Disability Insurance Scheme Campaign 2012- “Every Australian Counts”, Retrieved from: http://www.everyaustraliancounts.com.au/ on 31.01.2012
  5. National Health and Medical Research Council, “Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research”, June 2007, Revised Edition, Australian Government (2007), Retrieved from: http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e78.pdf on the 03.02.2012
  6. Newell, C., “Flourishing Rhetorically: Disability, Diversity and Equal Opportunity Disappointment”, Retrieved from: http://www.adcet.edu.au/StoredFile.aspx?id=1236&fn=Newell.pdf on 01/02/2012
  7. Newell, C., 1999, “The Social Nature of Disability, Disease and Genetics: A Response to Gillam, Persson, Holtug, Draper and Chadwick” in Journal of Medical Ethics Vol. 25 No. 2 (April 1999), 172-175
  8. Ng, Y. F., 2010, “Prenatal Testing, East and West: Regulating disabled foetuses in China and Australia”, in the ‘Alternative Law Journal’ Vol. 35-2 Monash University, 77-82
  9. Research Department of the Catholic Bishops Conference, “Inquiry into the Scientific, Ethical and Regulatory ConsiderationsRelevant to Cloning of Human Beings”,  in Inquiry into Cloning: xiv.iii. from the Submission to House of Representatives Standing Committee on Legal & Constitutional Affairs (2000)
  10. Saxton, M. “Prenatal screening and discriminatory attitudes about disability” in Embryos, Ethics, and Women’s Rights: Exploring the New Reproductive Technologies, Baruch, Elaine Hoffman; D’Adamo Jr., Amadeo F.; Seager, Joni , 1988, 217-224
  11. Webley C. & Halliday J., ‘Report on Prenatal Diagnostic Testing in Victoria 1999 (1999) Perinatal Data Collection Unit

 


[1] Saxton, 1988

[2] Saxton, 1988

[3] Ng, 2010: 81

[4] Hume, 1996: 2

[5] Webley and Halliday, 1999

[6] Gillam, 1999: 163

[7] Newell, “Flourishing Rhetorically”

[8] Newell, 1999: 174

[9] Research Department of the Catholic Bishops Conference (2000)

[10] Newell: 173

[11] NHMRC, 2007

[12] NHMRC, 2007

[13] ibid.

[14] NDIS, 2012

[15] Altmann, 2011