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    • Publisher:
      Cambridge University Press
      Publication date:
      09 August 2009
      04 December 2003
      ISBN:
      9780511543982
      9780521826334
      9780521533713
      Dimensions:
      (247 x 174 mm)
      Weight & Pages:
      0.524kg, 182 Pages
      Dimensions:
      (247 x 174 mm)
      Weight & Pages:
      0.376kg, 182 Pages
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  • Selected: Digital
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    Book description

    This is the first book that covers comprehensively the difficult ethical issues involved in prevention of intellectual disability (learning disability, mental retardation). These issues are discussed both practically and theoretically in the light of four case examples drawn from real life. The cases demonstrate various issues raised by the concept of preventing intellectual disability, including definition, epidemiology, screening, and genetic counselling. Two major approach models (reproductive autonomy and public health) are scrutinised, and the practical issues of prevention are examined closely with respect to three syndromes (Down, Fragile X, and Aspartylugosaminuria). The question 'Why should intellectual disability be prevented?' is examined thoroughly at each stage. As a paediatrician and a philosopher, Dr Louhiala presents the issues in a way that is both user-friendly and philosophically sound.

    Reviews

    'A moral minefield is carefully mapped and made accessible …'.

    Source: Journal of Psychological Medicine

    '… represents a happy marriage between ethical and clinical issues. A close reading of this important and challenging book has been an important experience for the reviewer. Offering sound food for thought, it demands a good act of mastication to be properly digested. I recommend it to all who are engaged in 'a joint search for a morally excusable decision' in matters of genetic counselling.'

    Source: European Child and Adolescent Psychiatry

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    Contents

    References
    Reference
    Abramowicz, H. K., Richardson, S. A. 1975. Epidemiology of severe mental retardation in children: community studies. Am. J. Ment. Defic. 80: 18–39
    Al-Jader, L., 1999. The achievements of antenatal screening programme for congenital abnormalities and lessons learned for clinical governance. J. Med. Genet. 36 (Suppl. 1): S70
    Allardt, E. 1993. Having, Loving, Being: An alternative to the Swedish model of welfare research. In: Nussbaum, M. C., Sen, A. (Eds) The Quality of Life, pp. 88–94. Oxford: Clarendon Press
    American Association on Mental Retardation 1992. Mental Retardation: Definition, Classification and Systems of Supports, 9th edn. Washington, DC: American Association on Mental Retardation
    Arenson, E. B., Forde, M. D. 1989. Bone marrow transplantation for acute leukemia and Down syndrome: report of a successful case and results of a national survey. J. Pediatr. 114: 69–72
    Arvio, M. 1993. Life with Aspartylglucosaminuria (Dissertation). Pääjärvi Rehabilitation Centre and Department of Child Neurology, University of Helsinki, Finland
    Arvio, M., Sauna-Aho, O., Peippo, M. 2001. Bone marrow transplantation for aspartylglucosaminuria: follow-up study of transplanted and non-transplanted patients. J. Pediatr. 138: 288–90
    Autti, T., Santavuori, P., Raininko, R., Renlund, M., Rapola, J., Saarinen-Pihkala, U. 1997. Bone-marrow transplantation in aspartylglucosaminuria. Lancet 349: 1366–7
    Bahado-Singh, R., Shahabi, S., Karaca, M., Mahoney, M. J., Cole, L., Oz, U. A. 2002. The comprehensive midtrimester test: high-sensitivity Down syndrome test. Am. J. Obstet. Gynecol. 186: 803–8
    Baird, P. A., Sadovnick, A. D. 1988. Life expectancy in Down syndrome adults. Lancet ii: 1354–6
    Behrman, R. E., Vaughan, V. C. (Eds) 1987. Nelson Textbook of Pediatrics, 13th edn. Philadelphia, PA: W. B. Saunders
    Benjamin, J., Li, L., Patterson, C., Greenberg, B. D., Murphy, D. L., Hamer, D. H., 1996. Population and familial association between the D4 dopamine receptor gene and measures of Novelty Seeking. Nat. Genet. 12 (Jan): 81–4
    Berger, M., Yule, W. 1985. IQ test and assessment. In: Clarke, A. M., Clarke, D. B., Berg, J. M. (Eds) Mental Deficiency: The Changing Outlook, pp. 53–95. Cambridge: Methuen and Co
    Bianchi, D. W. 1995. Prenatal diagnosis by analysis of fetal cells in maternal blood. J. Pediatr. 127: 847–56
    Block, N. J., Dworkin, G. 1974. IQ, Heritability and Inequality, Part 1. Philos. Public Affairs 3: 331–409
    Block, N. J., Dworkin, G. 1975. IQ, Heritability and Inequality, Part 2. Philos. Public Affairs 4: 40–99
    Boddington, P., Podpadec, T. 1991. Who are the mentally handicapped?J. Appl. Philos. 8: 177–90
    Boorse, C. 1975. On the distinction between disease and illness. Philos. Public Affairs 5: 49–68
    Booth, B. E., Verma, M., Singh, Beri R. 1994. Fetal sex determination in Punjab, India: correlations and implications. Br. Med. J. 309: 1259–61
    Booth, T. 1985. Labels and their consequences. In: Lane, D., Stratford, B. (Eds) Current Approaches to Down's syndrome, pp. 3–24. Eastbourne: Holt, Rinehart and Winston
    Borthwick-Duffy, S. A. 1996. Evaluation and measurement of quality of life: special considerations for persons with mental retardation. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume I. Conceptualization and Measurement, pp. 105–19. Washington, DC: American Association on Mental Retardation
    Bosk, C. L. 1992. All God's Mistakes. Genetic Counseling in a Pediatric Hospital. Chicago: The University of Chicago Press
    Boss, J. A. 1990. How voluntary prenatal diagnosis and selective abortion increase the abnormal human gene pool. Birth 17: 75–9
    Boss, J. A. 1993. The Birth Lottery. Prenatal Diagnosis and Selective Abortion. Chicago: Loyola University Press
    Bouchard, L., Renaud, M. 1997. Female and male physicians' attitudes toward prenatal diagnosis: a pan-Canadian survey. Soc. Sci. Med. 44: 381–92
    Bourguignon, H. J. 1994. Mental retardation: the reality behind the label. Camb. Q. Health. Ethics 3: 179–94
    Brambati, B., Formigli, L., Tului, L., Simoni, G. 1990. Selective reduction of quadruplet pregnancy at risk of Beta-thalassemia. Lancet 336: 1325–6
    Bränholm, I. B., Degerman, E. A. 1992. Life satisfaction and activity preferences in parents of Down's syndrome children. Scand. J. Soc. Med. 20: 37–44
    Br⊘ndum-Nielsen, K., N⊘rgaard-Pedersen, B. 1993. Prenatal diagnostik i Norden. Nordisk Medicin. 108: 189–92
    Burleigh, M. 1994. Death and Deliverance. ‘Euthanasia’ in Germany 1900–1945. Cambridge: Cambridge University Press
    Burton, L. 1975. The Family Life of Sick Children. London: Routledge and Kegan Paul
    Cairney, R. 1996. Democracy was never intended for degenerates: Alberta's flirtation with eugenics comes back to haunt it. Can. Med. Assoc. J. 155: 789–92
    Callahan, D. 1996. The genetic revolution. In: Thomasma, D., Kushner, T. (Eds) Birth to Death. Science and Bioethics, pp. 13–20. Cambridge: Cambridge University Press
    Campbell, A. V. 1984. Ethical issues in prenatal diagnosis. Br. Med. J. Clin. Res. Ed. 288: 1633–4
    Canguilhem, G. 1978. On the Normal and the Pathological. Dordrecht: Reidel
    Carr, J. 1995. Down's Syndrome Children Growing up. Cambridge: Cambridge University Press
    Carter, C. O., Evans, K. A., Fraser, Roberts J. A., Buck, A. R. 1971. Genetic clinic follow-up. Lancet 1: 281–5
    Cassell, E. J. 1995. Pain and suffering. In: Reich W. (Ed.) Encyclopedia of Bioethics, 2nd edn, pp. 1897–1904. New York: Macmillan
    Chadwick, R. 1993. What counts as success in genetic counseling?J. Med. Ethics 19: 43–6
    Chadwick, R., Ngwena, C. 1992. The development of a normative standard in counselling for genetic disease: ethics and law. J. Soc. Welfare Fam. Law 4: 276–95
    Chadwick, R., ten Have, H., Husted, J.et al. 1998. Genetic screening and ethics: European perspectives. J. Med. Philos. 23: 255–73
    Chapple, J. C., Dale, R., Evans, B. G., 1987. The new genetic: will it pay its way?Lancet i: 1189–92
    Clarke, A. 1990. Genetics, ethics and audit. Lancet 335: 1145–7
    Clarke, A. 1991. Is non-directive genetic counselling possible?Lancet 338: 998–1001
    Clarke, A. 1993. Response to: What counts as success in genetic counselling?J. Med. Ethics 19: 47–9
    Clarke, A. (Ed.) 1994. Genetic Counselling. Practice and Principles. London: Routledge
    Clarke, A. 1997a. Outcomes and processes in genetic counselling. In: Harper, P. S., Clarke, A. J. (Eds) Genetics, Society and Clinical Practice, pp. 165–78. Oxford: BIOS Scientific Publishers
    Clarke, A. 1997b. The process of genetic counselling: beyond non-directiveness. In: Harper, P. S., Clarke, A. J. Genetics, Society and Clinical Practice. Oxford: BIOS Scientific Publishers
    Clarke, A. M., Clarke, D. B., Berg, J. M. (Eds) 1985. Mental Deficiency: The Changing Outlook. Cambridge: Methuen and Co
    Conrad, P. 1997. Public eyes and private genes: historical frames, new constructions, and social problems. Soc. Problems 44: 139–55
    Conrad, P. 2001. Media images, genetics and culture: potential impacts of reporting scientific findings on bioethics. In: Barry Hoffmaster (Ed.) Bioethics in Social Context, pp. 90–111. Philadelphia, PA: Temple University Press
    Copel, J. A., Bahado-Singh, R. O. 1999. Prenatal screening for Down's syndrome – a search for the family's values. New Engl. J. Med. 341: 521–2
    Coulter, D. L. 1997. Health-related application of quality of life. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume II. Application to Persons with Disabilities, pp. 95–104. Washington, DC: American Association on Mental Retardation
    Cowan, R. S. 1994. Women's roles in the history of amniocentesis and chorionic villi sampling. In: Rothenberg, K. H., Thomson, E. J. (Eds) Women and Prenatal Testing, pp. 35–48. Columbus, OH: Ohio State University Press
    Cuckle, H. 1998. Rational Down syndrome screening policy. Am. J. Public Health 88: 558–9
    Dalgaard, O. Z., Norby, S. 1989. Autosomal dominant polycystic kidney disease in the 1980s. Clin. Genet. 36: 320–5
    D'Alton, M. E., DeCherney, A. H. 1993. Prenatal diagnosis. New Engl. J. Med. 328: 114–20
    Dodge, J. A. 1998. Gene therapy for cystic fibrosis: what message for the recipient?. Thorax 53: 157–8
    Downie, R. S., Calman, K. C. 1994. Healthy Respect. Ethics in Health Care. Oxford: Oxford University Press
    Durkin, M. S. 1996. Beyond mortality – residential placement and quality of life among children with mental retardation. Am. J. Public Health 86: 1359–60
    Ebstein, R. P., Novick, O., Umansky, R. 1996. Dopamine D4 receptor (D4DR) exon III polymorphism associated with the human personality trait of novelty seeking. Nat. Genet. 12 (Jan): 78–80
    Edgerton, R. B. 1996. A longitudinal ethnographic research perspective on quality of life. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume I. Conceptualization and Measurement, pp. 83–90. Washington, DC: American Association on Mental Retardation
    Edwards, S. 1997. The moral status of intellectually disabled individuals. J. Med. Philos. 22: 29–42
    Engel, G. 1977. The need for a new medical model: A challenge for biomedicine. Science 4286: 129–35
    Engelhardt, H. T. 1986. The Foundations of Bioethics. Oxford: Oxford University Press
    Evans, M. 1996. Some ideas of the person. In: Greaves, D., Upton, H. (Eds) Philosophical Problems in Health Care, pp. 23–35. Aldershot: Avebury
    Evans, M. I., Hallak, M., Johnson, M. P. 1995. Genetic testing and screening: prenatal diagnosis. In: The Encyclopedia of Bioethics, pp. 986–91. New York, NY: Macmillan
    Felce, D., Perry, J. 1996. Assessment of quality of life. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume I. Conceptualization and Measurement, pp. 63–72. Washington, DC: American Association on Mental Retardation
    Fricker, J. 1996. PET and obsessive-compulsive disorder. Lancet 347: 604
    Friedmann, T. 1990. Opinion: the human genome project – some implications of extensive ‘reverse genetic’ medicine. Am. J. Hum. Genet. 46: 407–14
    Froster, U. G., Jackson, L. 1996. Limb defects and chorionic villus sampling: results from an international registry, 1992–94. Lancet 347: 489–94
    Fryers, T. 1984. The epidemiology of severe intellectual impairment. London: Academic Press
    Fryers, T. 1992. Epidemiology and taxonomy in mental retardation. Paediatr. Perinat. Epidemiol. 6: 181–92
    Gates, E. A. 1994. Prenatal genetic testing: does it benefit pregnant women? In: Rothenberg, K. H., Thomson, E. J. (Eds) Women and Prenatal Testing, pp. 183–200. Columbus, OH: Ohio State University Press
    Gath, A. 1990. Down syndrome children and their families. Am. J. Med. Genet. 7(Suppl.): 314–16
    Gillam, L. 1999. Prenatal diagnosis and discrimination against the disabled. J. Med. Ethics 25: 163–71
    Gillon, R. 1994. Philosophical Medical Ethics. Chichester: John Wiley & Sons
    Glass, B. 1971. Science: endless horizons or golden age?Science 171: 23–9
    Goodey, C. 1997. Learning difficulties and the guardians of the gene. In: Clarke, A., Parsons, E. (Eds) Culture, Kinship and Genes, pp. 206–17. Basingstoke, UK: Macmillan
    Gracia, D. 1993. The intellectual basis of bioethics in Southern European countries. Bioethics 7: 97–107
    Gräsbeck, R. 1995. Normaalin käsite lääketieteessä. In: Louhiala, P. Lääketiede ja filosofia, pp. 66–77. Helsinki: Yliopistopaino. (The concept of normal in medicine. In Finnish)
    Gregg, I. 1994. A memorable patient. Divine intervention?Br. Med. J. 309: 928
    Griffin, J. 1986. Well-being. Oxford: Clarendon Press
    Grossman, H. J. (Ed.) 1983. Classification in Mental Retardation (3rd rev.). Washington, DC: American Association on Mental Deficiency
    Hagberg, G. 1992. Severe and mild mental retardation – the epidemiologists view. Abstracts of the Congress on Mental Retardation in Childhood, Oslo
    Hallamaa, J. 1994. The Prisms of Moral Personhood. Helsinki: Luther-Agricola-Society
    Hare, R. 1976. Survival of the weakest. In: Gorovitz, S. et al. (Eds) Moral Problems in Medicine, pp. 364–9. Englewood Cliffs, NJ: Prentice-Hall
    Harper, P. S., Clarke, A. J. 1997. Genetics, Society and Clinical Practice. Oxford: BIOS Scientific Publishers
    Harris, J. 1985. The Value of Life. London: Routledge & Kegan Paul
    Harris, J. 1998 a. Clones, Genes and Immortality. Oxford: Oxford University Press
    Harris, J. 1998 b. Should we attempt to eradicate disability? In: Morscher, E. et al. (Eds) Applied Ethics in a Troubled World, pp. 105–14. Dordrecht: Kluwer
    Hasle, H., Haunstrup, Clemmensen I., Mikkelsen, M. 2000. Risks of leukaemia and solid tumours in individuals with Down's syndrome. Lancet 355: 165–9
    Hatton, C. 1998. Whose quality of life is it anyway? Some problems with the emerging quality of life consensus. Ment. Retard. 36: 104–15
    Hauerwas, S. 1986. Suffering Presence. Theological Reflections on Medicine in the Mentally Handicapped and the Church. Notre Dame: University of Notre Dame Church
    Häyry, H. 1991. The Limits of Medical Paternalism. London: Routledge
    Häyry, M. 1990. Critical Studies in Philosophical Medical Ethics (Dissertation). Helsinki: University of Helsinki
    Heal, L. W., Sigelman, C. K. 1996. Methodological issues in quality of life measurement. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume I. Conceptualization and Measurement, pp. 91–104. Washington, DC: American Association on Mental Retardation
    Hennekens, C. H., Buring, J. E. 1987. Epidemiology in Medicine. Boston: Little, Brown and Company
    Herrnstein, R. J. 1994. The Bell Curve: Intelligence and Class Structure in American Life. New York: Free Press
    Hietala, M. 1998. Prospects for Genetic Screening in Finland (Dissertation). Turku: Annales Universitatis Turkuensis D 322
    Hietala, M., Grön, K., Syvänen, A. -C., Peltonen, L., Aula, P. 1993. Prospects of carrier screening of aspartylglucosaminuria in Finland. Eur. J. Hum. Genet. 1: 296–300
    Hill, E. C. 1986. Your morality or mine? An inquiry into the ethics of human reproduction. Am. J. Obstet. Gynecol. 154: 1173–80
    Hoedemaekers, R. 1998. Normative Determinanats of Genetic Screening and Testing (Ph.D. thesis). Wageningen: Eburon P&L
    Holmes-Siedle, M., Ryynanen, M., Lindenbaum, R. H. 1987. Parental decisions regarding termination of pregnancy following prenatal detection of sex chromosome abnormality. Prenat. Diagn. 7: 239–44
    Honderich, T. (Ed.) 1995. The Oxford Companion to Philosophy. Oxford: Oxford University Press
    Horgan, J. 1993. Eugenics revisited. Sci. Am. June: 92–100
    Hubbard, R. 1986. Eugenics and prenatal testing. Int. J. Health Serv. 16: 227–42
    Hughes, C., Hwang, B. 1996. Attempts to conceptualize and measure quality of life. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume I. Conceptualization and Measurement, pp. 51–62. Washington, DC: American Association on Mental Retardation
    Hunt, J. 1961. Intelligence and Experience. New York: Ronald Press
    Imam, Z. 1994. India bans female feticide. Br. Med. J. 309: 428
    Isoniemi, A., Hietala, M., Aula, P., Jalanko, A., Peltonen, L. 1995. Identification of a novel mutation causing aspartylglucosaminuria reveals a mutation hotspot region in the aspartylglucosaminuria gene. Hum. Mutat. 5: 318–26
    Itälinna, M., Leinonen, E., Saloviita, T. 1994. Kultakutri karhujen talossa. Kehitysvammaisen lapsen perheen voimavarat ja selviytyminen. Tampere: Kehitysvammaisten tukiliitto. (The resources of a family with an intellectually disabled child. In Finnish)
    Jallinoja, P. 2001. Genetic screening in maternity care: preventive aims and voluntary choices. Sociol. Health Illness 23: 286–307
    Jackson, L. G. 1990. Commentary: Prenatal diagnosis: The magnitude of dysgenic effects is small, the human benefits, great. Birth 17: 80
    Jones, S. 1996. In the Blood. God, Genes and Destiny. London: Flamingo/Harper Collins
    Julian-Reynier, C., Aurran, Y., Dumaret, A.et al. 1995. Attitudes towards Down's syndrome: follow up of a cohort of 280 cases. J. Med. Gen. 32: 597–9
    Kääriäinen, R., Piepponen, P., Vaskilampi, T. (Eds) 1985. A multi-disciplinary case-control study of mental retardation and subnormality in low birth cohorts. Kuopion Yliopiston Julkaisuja, Kausanterveystiede, Alkuperäistutkimukset nro 1
    Karjalainen, S., Häyry, H. 1992. Luonnollisesta ja luonnottomasta. Ajatus 49: 7–13. (On the natural and the unnatural. In Finnish)
    Kärki, R. 1998. Lääketiede julkisuudessa. Tampere: Vastapaino. (Medicine and publicity. In Finnish)
    Kass, L. R. 1985. Toward a More Natural Science. New York: The Free Press
    Kass, L. R. 1996. The troubled dream of nature as a moral guide. Hastings Cent. Rep. 26 (6): 22–4
    Keith, K. D. 1996. Measuring quality of life across cultures: issues and challenges. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume I. Conceptualization and Measurement, pp. 73–82. Washington, DC: American Association on Mental Retardation
    Kent, A. P., Dornan, J. C. 1996. Judgment day in utero. Lancet 348 (Suppl II): 16
    Kessler, S., Levine, E. K. 1987. Psychological aspects of genetic counselling. IV. The subjective assessment of probability. Am. J. Med. Genet. 28: 361–70
    Kessler, S., Levine, E. K. 1989. Psychological aspects of genetic counselling. VI. Critical review of the literature dealing with education and reproduction. Am. J. Med. Genet. 34: 340–53
    Khanna, S. K. 1997. Traditions and reproductive technology in an urbanizing north Indian village. Soc. Sci. Med. 44: 171–80
    Kingston, H. M. 1994. ABC of Clinical Genetics. London: BMJ Publishing Group
    Kishnani, P. S., Sullivan, J. A., Keith, Walter B., Spiridigliozzi, G. A., Doraiswamy, P. M., Rama, Krishnan K. R., 1999. Cholinergic therapy for Down's syndrome. Lancet 353: 1064–5
    Kitcher, P. 1997. The Lives to Come. The Genetic Revolution and Human Possibilities. Harmondsworth: Penguin
    Kopelman, L. 1984. Respect and the retarded: issues of valuing and labeling. In: Kopelman, L., Moskop, J. C. (Eds) Ethics and Mental Retardation, pp. 65–85. Dordrecht: Reidel
    Kopelman, L., Irons, T. G., Kopelman, A. E. 1988. Neonatologists judge the ‘Baby Doe’ regulations. New Engl. J. Med. 318: 677–83
    Kuhse, H., Singer, P. 1985. Should the Baby Live? Oxford: Oxford University Press
    Kuppermann, M., Goldberg, J. D., Nease, R. F., Washington, A. E. 1999. Who should be offered prenatal diagnosis? The 35-year old question. Am. J. Public Health 89: 160–3
    Kurtz, R. A. 1977. Social Aspects of Mental Retardation. Lexington, MA: Lexington Books
    Kusum, . 1993. The use of prenatal diagnosis for sex selection; the Indian scene. Bioethics 7: 149–65
    Lancet 1982. Editorial. Directive counselling. ii: 368–9
    Lauren, M. 1998. Ihmisen perimä sanomalehden sivuilla. Sosiologian pro gradu-tutkielma, Helsingin yliopisto 1998. (Human genetic heritage on the pages of a newspaper. MA thesis, University of Helsinki 1998. In Finnish)
    Leonard, C. O., Chase, G. A., Childs, B. 1972. Genetic counseling: a consumer's view. New Engl. J. Med. 287: 433–9
    Lewontin, R. 1997. Billions and billions of demons. New York Rev. Books Jan 9: 28–32; responses and reply March 6: 50–2
    Lippman, A. 1994. Prenatal genetic testing and screening. Constructing needs and reinforcing inequities. In: Clarke, A. (Ed.) Genetic Counselling. Practice and Principles, pp. 142–86. London: Routledge
    Lippman, A. 1999. Prenatal diagnosis (letter). Am. J. Public Health 89: 1592
    Lippman, A., Wilfond, B. S. 1992. ‘Twice-told-stories’: Stories about genetic disorders. Am. J. Hum. Genet. 51: 936–7
    Littlefield, J. W. 1969. Prenatal diagnosis and therapeutic abortion. New Engl. J. Med. 280: 722–3
    Louhiala, P. 1993. Kehitysvammaisuuden perinataaliset tekijät. Jyväskylä: STAKES. Tutkimuksia 30. (Perinatal factors in mental retardation. Thesis in Finnish)
    Lucassen, A. 1998. Ethical issues in genetic of mental disorders. Lancet 352: 1004–5
    Macmillan, D. L., Gresham, F. M., Siperstein, G. N. 1993. Conceptual and psychometric concerns about the 1992 AAMR definition of mental retardation. Am. J. Ment. Retard. 98: 325–35
    Marteau, T. M. 1995. Toward informed decisions about prenatal testing: a review. Prenat. Diagn. 15: 1215–26
    Marteau, T. M., Drake, H. 1995. Attributions for disability: the influence of genetic screening. Soc. Sci. Med. 40: 1127–32
    Marteau, T. M., Kidd, J., Cook, R.et al. 1991. Perceived risk not actual risk predicts uptake of amniocentesis. Br. J. Obstet. Gynecol. 98: 282–6
    Marteau, T. M., Slack, J., Kidd, J., Shaw, R. 1992. Presenting a routine screening test in antenatal care: practice observed. Public Health 106: 131–41
    Marteau, T. M., Drake, H., Bobrow, M. 1994a. Counselling following diagnosis of fetal abnormality; the differing approaches of obstetricians, clinical geneticists and genetic nurses. J. Med. Genet. 31: 864–7
    Marteau, T. M., Drake, H., Reid, M. 1994b. Counselling following diagnosis of fetal abnormality: a comparison between German, Portuguese and UK geneticists. Eur. J. Hum. Genet. 2: 96–102
    Matikka, L. 2000. Comparability of quality-of-life-studies of the general population and people with intellectual disabilities. Scand. J. Disabil. Res. 2: 83–102
    Matikka, L., Vesala, H. T. 1997. Acquiescence in quality-of-life interviews with adults who have mental retardation. Ment. Retard. 35: 75–82
    Mayor, S. 1999. Parents of people with Down's syndrome report suboptimal case. Br. Med. J. 318: 687
    McCullough, L. B. 1984. The world gained and the world lost: labeling the mentally retarded. In: Kopelman, L., Moskop, J. C. (Eds) Ethics and Mental Retardation, pp. 99–118. Dordrecht: Reidel
    McGuffin, P., Thapar, A. 1997. Genetic basis of bad behaviour in adolescents. Lancet 350: 411–12
    McLaughlin, J. F., Bjornson, K. F. 1998. Quality of life and developmental disabilities. Dev. Med. Child Neurol. 40: 435
    Michie, S., Bron, F., Bobrow, M., Marteau, T. M. 1997a. Nondirectivenes in genetic counselling: an empirical study. Am. J. Hum. Genet. 60: 40–7
    Michie, S., Marteau, T. M., Bobrow, M. 1997b. Genetic counselling: the psychological impact of meeting patients' expectations. J. Med. Genet. 34: 237–41
    Modell, B., Kuliev, A. M. 1991. Services for thalassemia as a model for cost–benefit analysis of genetic services. J. Inherit. Metabol. Dis. 14: 640–51
    Molenaar, J. C. 1992. A Report from the Netherlands. The legal investigation of a decision not to operate on an infant with Down's syndrome and duodenal atresia. Bioethics 6: 35–40
    Munthe, C. 1996. The Moral Roots of Prenatal Diagnosis. Studies in Research Ethics No 7. Göteborg: The Royal Society of Arts and Sciences in Gotherburg, Centre for Research Ethics
    Murphy, T. F. 1985. The moral significance of spontaneous abortion. J. Med. Ethics 11: 79–83
    Murray, J., Cuckle, H., Taylor, G., Hewison, J. 1997. Screening for fragile X syndrome: information needs for health planners. J. Med. Screening 4: 60–94
    Musschenga, A. W. 1997. The relation between concepts of quality-of-life, health and happiness. J. Med. Philos. 22: 11–28
    Nature 1991. Editorial: Ethics and the human genome. 351: 591
    Nat. Genet. 1997. Editorial: Brave new now. 15: 1–2
    Nelkin, D., Lindee, M. S. 1995. The DNA Mystique. The Gene as a Cultural Icon. New York: W. H. Freeman and Company
    Nelkin, D., Tancredi, L. 1995. Health screening and testing in the public-health context. In: Reich, W. (Ed.) Encyclopedia of Bioethics, pp. 1129–32. New York: Macmillan
    Nesse, R. M., Williams, G. C. 1994. Why We Get Sick. The New Science of Darwinian Medicine. New York: Times Books, Random House
    Nicholson, A., Alberman, E. 1992. Cerebral palsy – an increasing contributor to severe mental retardation?Arch. Dis. Child. 67: 1050–5
    Nielsen, B. B., Liljestrand, J., Hedegaard, M., Thilsted, S. H., Joseph, A. 1997. Reproductive pattern, perinatal mortality, and sex preference in rural Tamil Nadu, south India: community based, cross sectional study. Br. Med. J. 314: 1521–4
    Noddings, N. 1984. Caring. A Feminine Approach to Ethics and Moral Education. Berkeley: University of California Press
    Nordenfelt, L. 1987. On the Nature of Health. An Action – Theoretic Approach. Dordrecht: Reidel
    Palo, J. 1995. Ei ihan tavalliset ihmiset. Helsingin Sanomat Kuukausiliite 25: 46–50 (Not just ordinary people. In Finnish)
    Palomaki, G. E. 1994. Population based prenatal screening for the fragile X syndrome. J. Med. Screen. 1: 65–72
    Palomaki, G. E., Haddow, J. E. 1996. Is it time for population-based prenatal screening for fragile-X?. Lancet 341: 373–4
    Parens, E. 1996. Taking behavioral genetics seriously. Hastings Cent. Rep. 26(4): 13–22
    Parfit, D. 1976. Rights, interests and possible people. In: Gorovitz, S. et al. (Eds) Moral Problems in Medicine, pp. 369–75. Englewood Cliffs, NJ: Prentice-Hall
    Parsons, E. 1997. Culture and genetics: is genetics in society or society in genetics? In: Clarke, A., Parsons, E. (Eds) Culture, Kinship and Genes. Basingstoke, UK: Macmillan
    Parsons, E., Bradley, D. 1994. Ethical issues in newborn screening for Duchenne muscular dystrophy. In: Clarke, A. (Ed.) Genetic Counselling. Practice and Principles, pp. 95–112. London: Routledge
    Pauker, S. P., Pauker, S. G. 1994. Prenatal diagnosis – why is 35 a magical number?. New Engl. J. Med. 330: 1151–2
    Payer, L. 1990. Medicine and Culture. London: Victor Gollancz
    Peippo, M. 1995. FraX-oireyhtymän perinnöllisyys. In: Arvio, M., Laine, P. (Eds) FraX-oireyhtymä pojalla ja miehellä. Pääjärven kuntayhtymän tutkimusraportti, pp. 6–13. (Heritability of FraX syndrome. In Finnish)
    Powledge, T., Fletcher, J. 1979. Guidelines for the ethical, social and legal issues in prenatal diagnosis. New Engl. J. Med. 300: 168–72
    Press, N. A., Browner, C. H. 1994. Collective silences, collective fictions: how prenatal diagnostic testing became part of routine prenatal care. In: Rothenberg, K. H., Thomsen, E. J. (Eds) Women and Prenatal Testing, pp. 201–18. Columbus: Ohio State University Press
    Press, N. A., Browner, C. H. 1997. Why women say yes to prenatal diagnosis. Soc. Sci. Med. 45: 979–89
    Pueschel, S. M., 1990. Clinical aspects of Down syndrome from infancy to adulthood. Am. J. Med. Genet. Suppl. 7: 52–6
    Puskala, R. M. 1995. In: Reinikka–Tevalin, R. (Ed.) Sikiödiagnostiikka – näkökulmia, pp. 40–3. Tampere: Kehitysvammaisten tulikiiton IKI – instituntti. (Fetal diagnosis – points of view. In Finnish)
    Qureshi, N. 1997. The relevance of cultural understanding to clinical genetic practice. In: Clarke, A., Parsons, E. (Eds) Culture, Kinship and Genes, pp. 111–19. Basingstoke, UK: Macmillan
    Rantakallio, P., Wendt, L. 1986. Mental retardation and subnormality in a birth cohort of 12000 children in Northern Finland. Am. J. Ment. Defic. 90: 380–7
    Rapp, R. 1994. Women's responses to prenatal diagnosis: a sociocultural perspective on diversity. In: Rothenberg, K. H., Thomson, E. J. (Eds) Women and Prenatal Testing, pp. 219–33. Columbus, OH: Ohio State University Press
    Reid, M. 1991. The diffusion of four prenatal screening tests across Europe. London: King's Fund Centre for Health Services Development
    Richardson, M. K., Reiss, M. J. 1999. What does the human embryo look like, and does it matter?Lancet 354: 244–6
    Richardson, S. A., Koller, H. 1985. Epidemiology. In: Clarke, A. M., Clarke, D. B., Berg, J. M. (Eds) Mental Deficiency: The Changing Outlook, pp. 356–400. Cambridge: Methuen and Co
    Rose, G. 1992. The Strategy of Preventive Medicine. Oxford: Oxford University Press
    Rose, S. 1995. The rise of neurogenetic determinism. Nature 373: 380–2
    Rose-Ackerman, S. 1982. Mental retardation and society: The ethics and politics of normalization. Ethics 93: 81–101
    Rosen, M., Clark, G. R., Kivitz, M. S. (Eds) 1976. The History of Mental Retardation. Collected Papers. Baltimore: University Park Press
    Rothman, B. K. 1994. The tentative pregnancy: then and now. In: Rothenberg, K. H., Thomson, E. J. (Eds) Women and Prenatal Testing, pp. 260–70. Columbus, OH: Ohio State University Press
    Rowley, P. T., Loader, S., Sutera, C. J., Walden, M. 1989. Do pregnant women benefit form hemoglobinopathy carrier detection?Ann. N. Y. Acad. Sci. 565: 152–60
    Santalahti, P., Hemminki, E. 1998. Use of prenatal screening tests in Finland. Eur. J. Public Health 8: 8–14
    Santalahti, P., Latikka, A. M., Ryynänen, M., Hemminki, E. 1996. Women's experiences of prenatal serum screening. Birth 23: 101–7
    Santalahti, P., Hemminki, E., Latikka, A. M., Ryynänen, M. 1998. Women's decision-making in prenatal screening. Soc. Sci. Med. 46: 1067–76
    Schalock, R. L. 1996. Reconsidering the conceptualization and measurement of quality of life. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume I. Conceptualization and Measurement, pp. vii–xi. Washington, DC: American Association on Mental Retardation
    Siperstein, G. N. (Eds) 1996. Quality of Life Volume I. Conceptualization and Measurement. Washington, DC: American Association on Mental Retardation
    Siperstein, G. N. (Eds) 1997. Quality of Life Volume II. Application to Persons with Disabilities. Washington, DC: American Association on Mental Retardation
    Schwartz, K. 1976. Nature's corrective principle in social evolution. Original 1908, reprinted in Rosen, M., Clark, G. R., Kivitz, M. S. (Eds) 1976. The History of Mental Retardation. Collected Papers, vol. 2, pp. 147–63. Baltimore: University Park Press
    Schwartz, R. 1996. Genetic knowledge: Some legal and ethical questions. In: Thomasma, D. C., Kushner, T. (Eds) Birth to Death. Science and Bioethics, pp. 21–34. Cambridge: Cambridge University Press
    Sen, A. 1993. Capability and well-being. In: Nussbaum, M. C., Sen, A. (Eds) The Quality of Life, pp. 30–53. Oxford: Clarendon Press
    Serra-Prat, M., Gallo, P., Jovell, A. J., Aymerich, M., Estrada, M. D. 1998. Trade-offs in prenatal detection of Down syndrome. Am. J. Public Health 88: 551–7
    Sheldon, T. 1999. Dutch doctors call for all pregnant women to be screened for Down's. Br. Med. J. 319: 872
    Shepperdson, B. 1983. Abortion and euthanasia of Down's syndrome children – the parents' view. J. Med. Ethics 9: 152–7
    Simola, K. 1995. Sikiötutkimukset – mitä, kenelle ja miksi? In: Reinikka-Tevalin, R. Sikiödiagnostiikka – näkökulmia, pp. 7–13. Tampere: Kehitysvammaisten tulikiiton IKI-instituutti. (Fetal investigations – what, to whom and why? In Finnish)
    Simpson, J. L. 1991. Screening for fetal and genetic abnormalities. Baillière's Clin. Obstet. Gynaecol. 5: 675–96
    Singer, P. 1993. Practical Ethics. Cambridge: Cambridge University Press
    Sjögren, B., Uddenberg, N. 1988. Decision making during the prenatal diagnostic procedure. A questionnaire and interview study of 211 women participating in prenatal diagnosis. Prenat. Diagn. 8: 263–73
    Skeels, H. M., Dye, H. B. 1976. A study of the effects of differential stimulation on mentally retarded children. Original 1939, reprinted in Rosen, M., Clark, G. R., Kivitz, M. S. (Eds) The History of Mental Retardation. Collected Papers, vol. 2, pp. 241–66. Baltimore: University Park Press
    Smith, D. K., Shaw, R. W., Marteau, T. M. 1994. Informed consent to undergo screening for Down's syndrome: the gap between policy and practice. Br. Med. J. 309: 776
    Somer, M., Mustonen, H., Norio, R. 1988. Evaluation of genetic counseling: Recall of information, post-counseling reproduction, and attitude of the counsellees. Clin. Genet. 34: 352–65
    Spallone, P. 1997. ‘Once you have a hammer, everything looks like a nail’. In: Clarke, A., Parsons, E. (Eds) Culture, Kinship and Genes, pp. 197–205. Basingstoke: Macmillan
    Sternberg, R. J. 1990. Metaphors of Mind – Conceptions of the Nature of Intelligence. Cambridge: Cambridge University Press
    Strauss, D., Eyman, R. K., Grossman, H. J. 1996. Predictors of mortality in children with severe mental retardation: the effect of placement. Am. J. Public Health 86: 1422–9
    Sutton, A. 1990. Prenatal Diagnosis: Confronting the Ethical Issues. London: The Linacre Centre
    Taylor, S. J., Bogdan, R. 1996. Quality of life and the individual's perspective. In: Schalock, R. L., Siperstein, G. N. (Eds) Quality of Life Volume I. Conceptualization and Measurement, pp. 11–22. Washington, DC: American Association on Mental Retardation
    The Danish Council of Ethics. 1993. Ethics and Mapping of the Human Genome. Copenhagen: Danish Council of Ethics
    Tooley, M. 1972. Abortion and infanticide. Philos. Public Affairs 2: 37–65
    Vácha, J. 1982. The problem of so-called normality in anthropological sciences. Modern Man, Anthropos (Brno) 22: 73–85
    Vanhatalo, S. 1999. Sikiön kipu – totta vai yliempaattista kuvittelua?Duodecim 115: 1458–63. (Foetal pain – true or imagination? In Finnish)
    Vehmas, S. 1999a. Discriminative assumptions of utilitarian bioethics regarding individuals with intellectual disabilities. Disabil. Soc. 14: 37–52
    Vehmas, S. 1999b. Newborn infants and the moral significance of intellectual disabilities. J. Assoc. Persons Sev. Handicaps 24: 111–21
    Virkkula, S. 1998. Karsi vammaisia, karsit kuluja. Aamulehti 26. 4. 1998: 17–18 (Less disabled, less costs. In Finnish)
    Wald, N. J., Kennard, A., Hackshaw, A., McGuire, A. 1997. Antenatal screening for Down's syndrome. J. Med. Screen. 4: 181–246
    Warren, M. A. 1997. Moral Status. Obligations to Persons and Other Living Things. Oxford: Clarendon Press
    Watson, E., Mayall, E., Chapple, J.et al. 1991. Carrier screening for cystic fibrosis. Br. Med. J. 303: 405–7
    Watson, J. 1997–1998. Good gene, bad gene. What is the right way to fight the tragedy of genetic disease?Time, Special issue, Winter: 86
    Welie, J. V. M. 1998. In the Face of Suffering. The Philosophical-Anthropological Foundations of Clinical Ethics. Omaha: Creighton University Press
    Wertz, D. 1997. Reconsidering ‘nondirectiveness’ in genetic counseling. Gene Letter 1, Issue 4 (http://www.geneletter.org/0197/counseling.htm)
    Wertz, D., Fletcher, J. C. 1988. Attitude of genetic counselors: a multinational survey. Am. J. Hum. Genet. 42: 592–600
    White, M. T. 1998. Decision-making through dialogue: reconfiguring autonomy in genetic counseling. Theoret. Med. Bioethics 19: 5–19
    White, M. T. 1999. Making responsible decisions. An interpretive ethic for genetic decision making. Hastings Cent. Rep. 29: 14–21
    Whitten, C. F. 1973. Sickle-cell programming – an imperiled promise. New Engl. J. Med. 288: 318–19
    Wickelgren, I. 1999. Nurture helps mold able minds. Science 283: 1832–4
    Wilska, M. 2001. Aina syntyy lapsia, joiden vammaisuus tulee yllätyksenä. Helsingin Sanomat. (There will always be children whose disability will be a surprise. In Finnish)
    Wolraich, M. L., Siperstein, G. N., Reed, D. 1991. Doctors' decisions and prognostications for infants with Down syndrome. Dev. Med. Child Neurol. 33: 336–42
    World Health Organization 1980. International Classification of Impairments, Disabilities and Handicaps. Geneva: WHO
    Wulff, H., Andur Pedersen, S., Rosenberg, R. 1986. Philosophy of Medicine – An Introduction. Oxford: Blackwell
    Zigler, E., Balla, D., Hodapp, R. 1984. On the definition and classification of mental retardation. Am. J. Ment. Defic. 89: 215–30

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