Bioethics theories are supposed to develop ethical principles, which allow for the governance of science, technology, and biomedical research. This article presents evidence for the lack of a disability rights approach, or even an acceptance of one, in the development of bioethics theories. The author also describes the debate on bioethics issues as they relate to disabilities, using as an example the debate over sex selection and disability “deselection.” Characteristics labeled as disabilities, a term that often is used as a synonym for defects, diseases, and subnormal abilities, are seen as “medical problems” in need of medical solutions. An “animal farm” philosophy appears to dominate the debate over bioethics issues and the development of bioethics theories as they pertain to disabilities. In this philosophy, characteristics labeled as medical problems are treated differently from characteristics labeled as societal problems, making the acceptance of a disability rights approach impossible because such an approach perceives disability within a social justice framework rather than a medical one.
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References
1.
Alderson, P. (2001). Prenatal screening: Past, present and future. In E. E. Hore (Ed.), Before birth. London: Ashgate.
2.
Ärzte Zeitung. (2001, March 3). Absage an Gentests, PID und Pränataldiagnostik . Retrieved January 26, 2003, from http://www.aerztezeitung.de/docs/2001/03/22/054a0602.asp
3.
Asch, A., & Parens, E. (1999). The disability rights critique of prenatal genetic testing. The Hastings Center Report, 29 (Suppl.), pp. S1—S25.
4.
Beauchamp, T.L., & Childress, J.F. (1978). Principles of biomedical ethics. New York: Oxford University Press.
5.
Birnbacher, D. (1999). Kongreß für Philosophie, Konstanz, 4.-8.10.99, Referat am 07.10.99 Dieter Birnbacher, Selektion am Lebensbeginn—ethische Aspekte. Retrieved January 26, 2003, from http://www.netlink.de/gen/Zeitung/1999/991007e.htm
6.
Brown, A. (1998, February 18). Amnesty's latest fear: How our genes may determine our fate. The Independent, p. 19.
7.
Calaça, C., & Akin, A. (1995). The issue of sex selection in Turkey. Human Reproduction, 10, 1631—1632.
8.
Council of Europe. (1997). European convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: Convention on human rights and biomedicine (Article 14: non-selection of sex). Retrieved from http://conventions.coe.int/treaty/en/Treaties/Html/164.htm
9.
Diederich, N., & Maroger, D. (2001). Les personnes handicapées face au diagnostic prénatal: Eliminer avant la naissance ou accompagner?Ramonville, Ste Ann, France: Editions ERES.
10.
Disabled Peoples' International Europe. (2000 ). The right to live and be different (Solihull Declaration) . Retrieved January 26, 2003, from http://www.johnnypops.demon.co.uk/bioethicsdeclaration/index.htm
11.
DOK Zürich Schweiz. (1998). Diskriminierung behinderter Menschen in der Schweiz. Benachteiligungen und Maßnahmen zu deren Behebung. Hg.: Dachorganisationenkonferenz der privaten Behindertenhilfe. Retrieved January 26, 2003, from http://216.239.37.100/search?q=cache:vgGZEQAGfx8C:www.disability-research.ch/d/shared/dokumente/Diskb98d.pdf+Diskriminierung+behinderter+Menschen+in+der+Schweiz&hl=en&ie=UTF-8
12.
Down Syndrome Network of Germany. (1994). Eltern fordern Lebensrecht und Unterstützung ohne Einschränkung. Retrieved January 26, 2003, from http://www.down-syndrom.org/ak204b.htm
13.
Federal Organization for Physically and Multiply Disabled People. (2003). Netzwerk gegen Selektion durch Pränataldiagnostik . Retrieved January 26, 2003, from http://www.bvkm.de/netzwerk/
14.
German Ministry for Health and Social Affairs. ( 1990). Gesetz zum Schutz von Embryonen (Embryonenschutzgesetz - ESchG) Vom 13. December 1990 BGBl. I 1990 S. 2746-2748 (BGBl III 453-19) ' 3 Verbotene Geschlechtswahl. Retrieved January 26, 2003, from http://www.bmgesundheit.de/rechts/genfpm/embryo/embryo.htm
15.
Harris, J. (2000). Is there a coherent social conception of disability?Journal of Medical Ethics, 26, 95—100. Abstract retrieved January 26, 2003, from http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10786318&dopt=Abstract
16.
Hennen, L., Petermann, T., & Sauter, A. (2000). Stand und Perspektiven der genetischen Diagnostik [Genetic diagnostics: Status and prospects](Report No. 66). Germany: Institute for Technology Assessment and Systems Analysis at the Karlsruhe Research Center, Office of Technology and Assessment at the German Parliament . Retrieved January 26, 2003, from http://www.tab.fzk.de/de/projekt/zusammenfassung/Textab66.htm
17.
House of Commons of Canada. (2002). An act respecting assisted human reproduction. Bill C-13. First reading, October 9, 2002. Retrieved January 26, 2003, from http://www.parl.gc.ca/37/2/parlbus/chambus/house/bills/government/C-13/C-13_1/C-13_cover-E.html
18.
Hubbard, R. (1990). The politics of women's biology. New Brunswick, NJ: Rutgers University Press.
19.
Human Fertilization and Embryology Authority. ( 1993). Sex selection (Public consultation document).
20.
India Ministry of Human Resource Development, Department of Women & Child Development. (1994). Convention on elimination of all forms of discrimination against women (CEDAW): India's first report. Retrieved January 26, 2003, from http://wcd.nic.in/CEDAW4.htm
21.
International Centre for Bioethics, Culture, and Disability. (2003a). Rationale for the establishment of an international center for bioethics, culture and disability. Retrieved January 26, 2003, from http://www.bioethicsanddisability.org/Centerrational.html
22.
International Centre for Bioethics Culture and Disability. (2003b). Sex selection. Retrieved January 26, 2003, from http://www.bioethicsanddisability.org/sexselection.html
23.
Kaplan, D. (1993). Prenatal screening and its impact on persons with disabilities. Clinical Obstetrics and Gynecology, 36, 605—612. Abstract retrieved January 26, 2003 , from http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8403607&dopt=Abstract
24.
Kirschner, K.L., Ormond, K.E., & Gill, C.J. (2000). The impact of genetic technologies on perception of disability. Quality Management in Health Care, 8(3), 19—26. Abstract retrieved January 26, 2003, from http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10947381&dopt=Abstract
25.
Knoopers, B.M. (1993). Human genetics: Parental, professional and political responsibility (1992 Picard Lecture in Health Law). Health Law Journal, 1, 14—23.
26.
Kolata, G. (2001, September 28). Fertility ethics authority approves sex selection. The New York Times, Section A, p. 16. Retrieved January 26, 2003, from http://www.genetics-and-society.org/resources/items/20010928_nytimes_kolata.html
27.
Law on Maternal and Infant Health Care. (1994, October 28). Renmin Ribao (Peoples Daily, China).
28.
Lippman, A. (1991). Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. American Journal of Law and Medicine, 17(1/2), 15—50. Abstract retrieved January 26, 2003 , from http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1877608&dopt=Abstract
29.
Little People of America. (1997). What is LPA's position on the implications of these discoveries in genetics? Retrieved from http://www.lpaonline.org/resources_faq.html
30.
Mallik, R. (2002). A less valued life: Population policy and sex selection in India. Takoma Park, MD: Center for Health and Gender Equity. Retrieved January 26, 2003, from http://www.genderhealth.org/pubs/MallikSexSelectionIndiaOct2002.pdf
31.
Medical Consultation and Judgment. (1989). 18 PA. CONS. STAT. § 3204(c), as amended November 17, 1989.
32.
Middleton, A., Hewison, J., & Mueller, R. (2001). Prenatal diagnosis for inherited deafness—What is the potential demand?Journal of Genetic Counseling, 10(2), 121—131. Abstract retrieved January 26, 2003, from http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11767801&dopt=Abstract
33.
Murphy v. United Parcel Service. (1998). Retrieved January 28, 2003, from http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/1998-99/murphy.htm
34.
Nelson, J. (1999, September/October). “Meaning of the act”: The disability rights critique of prenatal genetic testing. The Hastings Center Report (Suppl.), p. S3.
35.
Pembrey, M. (1998). In the light of preimplantation genetic diagnosis: Some ethical issues in medical genetics revisited. European Journal ofHuman Genetics, 6, 4—11.
36.
Retsinas, J. (1991). Impact of prenatal technology on attitudes toward disabled infants. In D. Wertz (Ed.), Research in the sociology of healthcare (pp. 89— 90). Westport, CT: JAI Press.
37.
Rivera y Carlo, R. (2002). Targeting the disabled. Boundless Magazine. Retrieved January 26, 2003, from http://www.boundless.org/2002_2003/features/a0000685.html
38.
Savulescu, J. (1999). Sex selection: The case for. Medical Journal of Australia, 171, 373—375. Retrieved January 26, 2003, from http://www.mja.com.au/public/issues/171_7_041099/savulescu/savulescu.html
39.
Sherwin, S. (1992). No longer patient: Feminist ethics and health care. Philadelphia: Temple University Press.
40.
Singer, P. (2001). Response to Mark Kuczewski. American Journal of Bioethics, 1(3), 55—57.
41.
Skene, L. (1993, October 28). Why prenatal screening is not eugenics . The Age, p. A12.
42.
Sutton v. United States. (1998). Retrieved January 28, 2003, from http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/1998-99/sutton.htm
43.
Tannsjorn, T. (1998). Compulsory sterilisation in Sweden. Bioethics, 12(3), 236—249.
44.
Toynbee, P. (2001, August 24). Rights are for the living. The Guardian (London). Retrieved January 26, 2003, from http://www.guardian.co.uk/comment/story/0,3604,541665,00.html
45.
United Nations Educational, Scientific, and Cultural Organization, Working Group of the International Bioethics Committee. ( 2002). Draft report on pre-implantation genetic diagnosis and germ-line intervention. Retrieved January 26, 2003, from http://www.unesco.org/ibc/en/actes/s9/ibc9draftreportPGD.pdf
46.
U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1983 ). Screening and counseling for genetic conditions. Washington, DC: U.S. Government Printing Office.
47.
Wendling, M. (2001, November 5). UK authorities look to tighten sex selection laws. CNSNews. Retrieved January 26, 2003, from http://www.cnsnews.com/ViewForeignBureaus.asp?Page=/ForeignBureaus/archive/200111/FOR20011105h.html
48.
Wertz, D.C. (2000). Drawing lines for policymakers. In E. Parens & A. Asch (Eds.), Prenatal testing and disability rights. Washington, DC: Georgetown University Press.
49.
Wertz, D.C., & Fletcher, J.C. (1989). Ethics and human genetics: A cross-cultural perspective. New York: Springer Verlag.
50.
Wertz, D.C., & Fletcher, J.C. (1993). A critique of some feminist challenges to prenatal diagnosis. Retrieved January 26, 2003 , from http://www.shriver.org/Research/SocialScience/Staff/Wertz/critique.htm
51.
Wertz, D.C., & Fletcher, J.C. (1998). Ethical and social issues in prenatal sex selection: A survey of geneticists in 37 nations. Social Science and Medicine, 46, 255—273. Retrieved January 26, 2003, from: http://www.shriver.org/Research/SocialScience/Staff/Wertz/sexselect.htm
52.
Wolbring, G. (2000). Science and the disadvantaged (Occasional Paper of The Edmonds Institute). Retrieved January 26, 2003, from http://www.edmonds-institute.org/wolbring.html
53.
Wolbring, G. (2001). Folgen der Anwendung genetischer Diagnostik fuer behinderte Menschen [Consequences of the application of genetic diagnostics for disabled people] (Expert opinion for the Study Commission on the Law and Ethics of Modern Medicine of the German Bundestag). Retrieved January 26, 2003, from http://www.bundestag.de/gremien/medi/medi_gut_wol.pdf
54.
Wolbring, G. (2003). Confined to your legs. In A. Lightman, D. Sarewitz, & C. Dresser (Eds.), Living with the genie: Essays on technology and the quest for human mastery. Washington, DC: Island Press.
55.
World Health Organization. (1999). Draft guidelines on bioethics 1999. Retrieved from http://helix.nature.com/wcs/b23a.html
