Beeson & Singer/ prenatal diagnosis

Marta Russell ap888 at lafn.org
Fri Aug 10 13:38:50 PDT 2001


kelley wrote:
>
> Now, how does that article and support of Beeson's opinion come off as not
> trying to impose anything on others. As Singer pointed out: it is not clear
> at all that parents who choose to abort are doing so because they devalue
> the lives of the disabled.

I cannot let this one go. He is correct to protect himself by saying ALL. Of course not all do, but here are some realities presetned by Dr. Gregor Wolbring of the U of Calgary in Candada: PERCEPTION OF DISABILITY The marketability of genetic tests depends a lot on the understanding and perception of disease and normality meaning there has to be a demand for the tests. That implies in the case of genetic diagnostic that we need the tests as a tool to detect certain characteristics so that we can try to avoid them. Which tests are developed for which characteristic depends a lot on perception towards the characteristic within society and itís valuation within society . As Caplan an eminent Bioethicist in the USA says: ìThe understanding that our society or others have of the concept of health, disease and normality will play a key role in shaping the application of emerging knowledge about human geneticsî http://www.med.upenn.edu/bioethics/genetics/articles/1.caplan.gene.therapy.html These dynamics of judging a characteristic has important implications. To quote Caplan again: ìHowever, it does seem that the definition of disease and health is closely tied to those differences or abnormalities that are disvalued by the individual or group. If a particular trait or behavior or physical structure is seen as causing impairment, dysfunction, pain, or other disvalued states then it is a prime candidate for categorization as a disease.î And he goes on to say: ìNevertheless, there does appear to be a conceptual link between abnormality, dysfunction and disvaluation. http://www.med.upenn.edu/bioethics/genetics/articles/1.caplan.gene.therapy.html

One example which shows the negative sentiment towards disabled people is the following. In a add of the shoe maker NIKE we read the following

"Fortunately the Air Dri-Goat features a patented goat- like outer sole for increased traction so you can taunt mortal injury without actually experiencing it. Right about now you're probably asking yourself 'How can a trail running shoe with an outer sole designed like a goat's hoof help me avoid compressing my spinal cord into a Slinky on the side of some unsuspecting conifer, thereby rendering me a drooling, misshapen non- extreme-trail-running husk of my former self, forced to roam the earth in a motorized wheelchair with my name embossed on one of those cute little license plates you get at carnivals or state fairs, fastened to the back?'..."

Backpacker Magazine NIKE AD Oct. 2000

Not often discussed by clinicians and the public is the view, expressed by a disabled people, that the demand for the technology is based on erroneous assumptions about the adverse impact of disability on life that the assumptions are too much based on the medical model of disability and hardly acknowledge the social model of disability (Prenatal diagnosis and selective abortion: A challenge to practice and policy American Journal of Public Health 1999 Adrienne Asch 89 11 1649 Miringoff ML. The Social Costs of Genetic Welfare. New Brunswick, NJ: Rutgers University Press; 1991; Hubbard R. The Politics of Women in Biology. New Brunswick, NJ: Rutgers University Press; 1990:chap 12_14; Lippman A. Prenatal genetic testing and screening: constructing needs and reinforcing inequities. Am J Law Med. 1991;17(1_2): 15_50; Field NIA. Killing "the handicapped"_before and after birth. Harvard Womens Law J 1993; 16:79_138; Fine M, Asch A. The question of disability: no easy answers for the women's movement. Reproductive Rights Newsletter. 1982;4(3): 19_20; Minden S. Born and unborn: the implications of reproductive technologies for people with disabilities. In: Arditti R, Duelli_Klein R, Mindin S, eds. Test_Tube Women: What Future for Motherhood? Boston, Mass: Pandora Press; 1984:298_312; Finger, A. Past Due: Disability, Pregnancy and Birth. Seattle, Wash: Seal Press; 1987;. Kaplan D. Prenatal screening and diagnosis: the impact on persons with disabilities. In: Rothenberg KH, Thompson EJ, eds. Women and Prenatal Testing: Facing the Challenges of Genetic Technology. Columbus: Ohio State University Press; 1994:49_61;

Asch A. Reproductive technology and disability. In: Cohen S, Taub N.Reproductive Laws for the 1990s. Clifton, NJ: Humana Press; 1989: 69_124; Asch A, Geller G. Feminism, bioethics and genetics. In: Wolf S, ed.Feminism and Bioethics: Beyond Reproduction. New York, NY: Oxford University Press; 1996:318_350). Many studies exist which show that disabled people view their quality of life as high as non disabled people

Table 3 Self esteem ratings following severe Spinal Cord Injury (SCI)

Non disabled Providers Non disabled Providers SCI survivors

at time of survey% Imaging self with SCI% group%

% Agreeing with the statement

I feel that I am a person of worth 98

55 95

I feel that I have a number of

good qualities 98

81 98

I take a positive attitude 96

57 91

I am satisfied with myself

on the whole 95

39 72

I am inclined to feel that I am

a failure 5

27 9

I feel that I do not have much

to be proud of 6

33 12

I feel useless at times 50

91 73

At times I feel I am no good at all 26

83 39

KA Gerhart et al., Quality of Life Following Spinal Cord Injury; Knowledge and Attitudes of Emergency Care providers, Annals of Emergency Medicine, 1994, vol. 23, 807_812

41% of emergency care providers believed that resuscitation efforts after severe SCI are too aggressive, and 28% believed that future quality of life should be a factor in determining theinterventions that should be provided. Only 18% imagined they would be glad to be alive with a severe SCI compared with 92% of a true SCI comparison group 17% of providers anticipated an average or better quality of life compared with 86% of the actual SCI comparison group

KA Gerhart et al., Quality of Life Following Spinal Cord Injury; Knowledge and Attitudes of Emergency Care providers, Annals of Emergency Medicine, 1994, vol. 23, 807_812 See also (P Cameron et al., Journal of Consulting and Clinical Psychology, 1973, vol. 41, 207_214). (C Ray & J West, Paraplegia, 1984, vol. 22, 75_86). R Stensman, Scandinavian Journal of Rehabilitation Medicine, 1985, vol. 17, 87_99 (JR Bach & MC Tilton, Archives of Physical Medicine and Rehabilitation, 1994, vol. 75, 626_632) LA Cushman & MP Dijkers, Archives of Physical Medicine and Rehabilitation, 1990, vol. 71, 191-196; GG Whiteneck et al., Rocky Mountain Spinal Cord Injury System Report to the National Institute of Handicapped Research, 1985, 29-33 MG Eisenberg & CC Saltz, Paraplegia, 1991, vol. 29, 514-520 (Ray C, West J. Social, sexual and personal implications of paraplegia. Paraplegia. 1984; 22:75-86) Saigal S, Feeny D, Rosenbaum P, Furlong W, Burrows E, Stoskopf B. Self- perceived health status and health-related quality of life of extremely low-birth- weight infants at adolescence. JAMA. 1996;276:453_459. For children whose disabling conditions do not cause early degeneration, intractable pain, and early death, life offers a host of interactions with the physical and social world in which people can be involved to their and others' satisfaction. Autobiographical writings and family narratives testify eloquently to the rich lives and the even richer futures that are possible for people with disabilities today

Brightman AJ. Ordinary Moments: The Disabled Experience. Baltimore, Md: Paul H. Brookes Publishing Co; 1984. Turnbull HR, Turnbull AP, eds. Parents Speak Out: Then and Now. Columbus, Ohio: Charles E. Merrill Publishing Cc; 1985. Prenatal diagnosis and selective abortion: A challenge to practice and policy American Journal of Public Health 1999 Adrienne Asch 89 11 1649;

Another negative argument related to disability within the debate is that the birth of a disabled child destroys the family. To give you three quotes

Parents of a child with unwanted disability have their interests impinged upon by the efforts, time, emotional burdens, and expenses added by the disability that they would not have otherwise experienced with the birth of a healthy child.(pp36_37) Botkin J. Fetal privacy and confidentiality. Hastings Cent Rep. 1995;25(3):32_39

Many who are willing to concede that people with disabilities could have lives they themselves would enjoy nonetheless argue that the cost to families of raising them justifies abortion. Women are seen to carry the greatest load for the least return in caring for such a child. Proponents of using the technology to avoid the births of children with disabilities insist that the disabled child epitomizes what women have fought to change about their lives as mothers: unending labor, the sacrifice of their work and other adult interests, loss of time and attention for the other children in the family as they juggle resources to give this disabled child the best available support, and uncertain recompense in terms of the mother's relationship with the child.Wertz DC, Fletcher JC. A critique of some feminist challenges to prenatal diagnosis. J Womens Health. 1993;2:173_188.

How did parents endure the shock? The few who made it through without enormous collateral damage to their lives had to summon up the same enormous reserves of courage and devotion that are necessary to all parents of children with special needs and disabilities; then, perhaps, they needed still more courage, because of the special, peculiar horror that the sight of their children produced in even the most compassionate. Society does not reward such courageÖ because those parents experience represents our own worst nightmare, ever since we first imagined becoming parents ourselves. The impact upon the brothers and sisters of the newborn was no less horrific. This was the defining ordeal of their family life ñleaving aside for now the crushing burden on their financial resources from now on. There was not one family I have seen that was resonable adjusted said Dr. Vaughan. Dark Remedy; the impact of thalidomide (2001) by Trent Stephens and Rock Brynner, Perseus Publishing, Cambridge Massachusetts, USA page 65/66

But reality is that many studies exist which show that the disabled child does not destroy families per se but if an effect is seen that itís the lack of support As Lipsky writes:î The literature on how disability affects family life is, to be sure, replete with discussions of stress; anger at unsupportive members of the helping professions; distress caused by hostility from extended family, neighbors, and strangers; and frustration that many disability-related expenses are not covered by health insuranceî.

Lipsky DK. A parental perspective on stress and coping. Am J Orthopsychiatry. 1985;55: 614_617.

If Professionals and parents believed that children with disabilities could indeed provide their parents many of the same satisfactions as any other child in terms of stimulation, love, companionship, pride, and pleasure in influencing the growth and development of another, they might reexamine their belief that in psychological, material, and social terms, the burdens of raising disabled children outweigh the benefits. A vast array of literature, both parental narrative and social science quantitative and qualitative research, powerfully testifies to the rewards-typical and atypical of raising children with many of the conditions for which prenatal testing is considered de rigeur and abortion is expected (Down syndrome, hemophilia, cystic fibrosis, to name only some).

Massie R, Massie S. Journey. New York, NY Alfred A. Knopf, 1975. Berube M. Life As We Know It: A Father a Family and an Exceptional Child. New York, NY Pantheon; 1996. Beck M. Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic. New York, NY Times Books/Random House; 1999. Turnbull AP Patterson JM, Behr SK, Murphy DL, Marquis JG, Blue_Banning J, eds. Cognitive Coping, Families, and Disability. Baltimore, Md: Paul H. Brookes Publishing Co; 1993. Taanila A, Kokkonen J, Jarvelin MK. The longterm effects of children's early_onset disability on marital relationships. Dev Med Child Neurol. 1996;38:567_577. Van Riper M, Ryff C, Pridham K. Parental and family well_being in families of children with Down syndrome: a comparative study. Res Nurs Health. 1992;15:227_235. Prenatal diagnosis and selective abortion: A challenge to practice and policy American Journal of Public Health 1999 Adrienne Asch 89 11 1649 Gath A, Gumley D. Down syndrome and the family: follow-up of children after birth and in infancy. Dev Ifed Child.Neurol. 1984;26:500- 508. Feingold M, O'Brien JE. Questionnaire results of 670 parents and siblings of Down syndrome children. Presented at the 10th Annual David W. 6th Workshop on Malformations and Morphogenesis; May 25, 1989; Madrid. Spain. Walker LS, Ford MB, Donald WD. Cystic fibrosis and family stress: effects of age and severity of illness. Pediatrics. 1987;79:239-246.

The medical profession and disability

Advances in human genetics will profoundly affect many medical specialities, including obstetrics, genetics internal medicine, pediatrics and family medicine. The medical profession plays a major role in the dissemination of information and is intimate involved in the distribution of genetic diagnostics and other medical procedures e.g. transplant medicine. Therefore itís highly important what kind of perception the medical profession has from disabled people. Furthermore in most countries, medical professionals - including genetic counselors - are expected to instruct patients on a specific course of action. A doctor who does not give advice is considered to be failing his or her patients. And in fact, most counseling is not only directive, but purposely pessimistic about the prospects for children with disabilities. (Wertz, DC, "Eugenics is Alive and Well," Science in Context, Vol. 11, No 3_4, Winter 1998, p. 493_510) http://www.genesage.com/professionals/geneletter/features/tackling.html A study done with professionals involved in genetic testing found the following.

ìAn important goal of genetic counseling is to reduce the number of deleterious genes in the populationî These nations and the % of agreement with that statement were China (100%), India (87%), Turkey (73%), Peru (71%), Spain (67%), Poland (66%), Russia, Greece (58%), Cuba (57%), Mexico (52%), Venezuela, Thailand (50%). Over one third in another 5 countries (Czech Republic, Hungary, Portugal, Brazil, Columbia)

Wertz DC 1998 Science in Context 11, 3-4 pp 493-510 (p497)

Majority of Geneticists in Belgium, Greece, Czech Republic, Hungary, Russia, Turkey, China, India, and Cuba and more than 33% in South Africa, France, Norway, Switzerland, Spain, Israel, Brazil Columbia, Mexico, Peru, Venezuela felt ìdissatisfied if parents decide to carry a seriously affected fetus to term

Wertz DC 1998 Science in Context 11, 3-4 pp 493-510 (p501)

ìIt is socially irresponsible knowingly to bring an infant with a serious genetic disorder into the world in an era of prenatal diagnosis.îMore than 50% agreed in South Africa, Belgium, Greece, Portugal, Czech Republic, Hungary, Poland, Russia, Israel, Turkey, China, India, Thailand, Brazil, Columbia, Cuba, Mexico, Peru and Venezuela. 26% of US geneticists, 55% of US primary care physicians and 44% of US patients agreed. This argument clearly has repercussions for disabled people. If it is socially irresponsible to bring disabled people into the world this clearly reflects a statement as to what society accepts as being part of their society and what they view as equal. Disabled people are to be avoided. This thinking has of course also implication in the field of neonatal care (see section Discrimination against the disabled; Treatment of Neonatalís). Clearly this argument also reflect a pure medical view of disability. A social model of disability with the embedded concept of social cure can not be used together with the argument that it is socially irresponsible to give birth to a disabled child which could have been prevented by testing and deselection procedures. Here we can clearly see another negative consequences of the availability of genetic diagnostic for disabled people.

The majority in 24 countries believed it is unfair to the child to be born with a disability. 40% agreed in USA, Canada and Chile. 36% in Finland and and UK; 33% in Switzerland and the Netherlands; 29% in Argentina, 27% in Australia 25% in Sweden and 18% in Japan

Wertz DC 1998 Science in Context 11, 3-4 pp 493-510 (p501)

Many studies exist which show that parents receive directive counseling snip

Marta



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