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References
Andrews, L., et al.: 1994, Assessing Genetic Risks, National Academy Press, Washington, D.C.
Baird, P.A.: 1990, ‘Geneticsand health care:A paradigmshift,’ Perspectives in Biology and Medicine 33, 203–213.
Beasley, M.G., Costello, P.M., and Smith, I.: 1994, ‘Intellectual statusof young adults with phenylketonuria (PKU),’ in J.-P. Farriaux and J.-L. Dhondt (eds.), New Horizons in Neonatal Screening, Amsterdam and New York, Elsevier Science, pp. 109–110.
Bloche, M.G.: 1996, ‘Clinical counseling and the problem of autonomy-negating influence,’ in R.R. Faden and N.E. Kass (eds.), HIV, AIDS & Childbearing: Public Policy, Private Lives, Oxford University Press, New York, pp. 257–319.
Brenton, D.P., and Lilburn, M.: 1996, ‘Maternal phenylketonuria:A study from the United Kingdom,’ European Journal of Pediatrics 155 (Suppl 1), S177–S180.
Burgard, P., et al.: 1996, ‘Intellectual development of the patients of the German collaborative study of children treated for Phenylketonuria,’ European Journal of Pediatrics 155 (Suppl1). S33–S38.
California Department of Health Services, Genetic Disease Branch: 1997, Cost and Availability of Dietary Treatment of Phenylketonuria (PKU): Report of a National Survey, Berkeley, California.
Clayton, E.W.: 1997, ‘Legal and ethical commentary: The dangers of reading duty too broadly,’ Journal of Law, Medicine & Ethics 25, 19–21.
Coulter, W.E., et al.: (1912), Heredity and Eugenics, University of Chicago Press, Chicago.
Davenport, C.B.: 1912, ‘The inheritance of physical and mental traits of man and their application to eugenics,’ in W.E. Coulter, et al., Heredity and Eugenics, Universityof Chicago Press, Chicago, pp. 269–288.
Diamond, A.: 1994, ‘Phenylalanine levels of 6-10 mg/dl may not be as benign as once thought,’ Acta Paediatrica Supplement 407, 89–91.
Dobzhansky, T.: 1962, Mankind Evolving, Yale University Press, New Haven.
Douglas, M.: 1975, ‘Deciphering a meal,’ in Implicit Meanings: Essays in Anthropology, Routledge and Kegan Paul, London, pp. 249–275.
Edelson, P.J.: 1994, ‘Lessons from the history of genetic screening in the US: Policy, past, present, and future,’ unpublished ms.
Epstein, C.J.: 1997, ‘1996 ASHG Presidential Address. Toward the 21st Century,’ American Journal of Human Genetics 60, 1–9.
Faust, D., Libon, D., Pueschel. S.: 1986–87, ‘Neuropsychological functioning in treated phenylketonuria,’ International Journal of Psychological Medicine 16, 169–177.
Fisch, R.O., et al.: 1997, ‘Phenylketonuria: Current dietary treatment practices in the United States and Canada,’ Journal of the American College of Nutrition 16, 147–151.
Geller, G., Holtzman, N.A.: 1995, ‘A qualitative assessment of primary care: Physicians perceptions about the ethical and social implications of offering genetic testing,’ Qualitative Health Research 5, 97–116.
Golub, E.S.: 1997, The Limits of Medicine: How Science Shapes our Hope for the Cure, University of Chicago Press, Chicago.
Green, R.M.: 1997, ‘Parental autonomy and the obligation not to harm ones child genetically,’ Journal of Law, Medicine & Ethics 25, 5–15.
Hayes, A., Costa, T., Scriver, C.R., Childs, B.:1985, ‘The effect of mendelian disease on human health II: Response to treatment,’ American Journal of Medical Genetrics 2, 243–255.
Hoffman, C., Rice, D., Sung, Hai-Yen: 1996, ‘Persons with chronic conditions: Their prevalence and costs,’ Journal of the American Medical Association 276 (November 13), 1473–1479.
Hood, L.: 1992, ‘Biology and medicine in the twenty-first century,’ in D.J. Kevles and L Hood, (eds.), The Code of Codes: Scientific and Social Issues in the Human Genome Project, Harvard University Press, Cambridge.
Hubbard, R., Wald, E.: 1993, Exploding the Gene Myth: How Genetic Information is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcers, Beacon Press, Boston.
Kahn, P.: 1996, ‘Coming to grips with genes and risk,’ Science (October 25), 497.
Kalverboer, A.F.: 1994, ‘Social behavior and task orientation in early-treated PKU,’ Acta Paediatrica supplement 407, 104–105.
Kass, E.H.: 1971, ‘Infectious disease and social change,’ Journal of Infectious Diseases 123, 110–114.
Kevles, D.J.: 1985, In the Name of Eugenics: Genetics and the Uses of Human Heredity, Alfred A. Knopf, New York.
Kevles, DJ., Hood, L., (eds.): 1992, The Code of Codes: Scientific and Social Issues in the Human Genome Project, Harvard University Press, Cambridge.
Kirkman, H.N.: 1982, ‘Projections of a rebound in frequency of mental retardation from phenylketonuria,’ Applied Research in Mental Retardation 3, 319–328.
Knox, R.: 1996, ‘Widespread chronic illness cited,’ Boston Globe, November 13.
Koch, R., Yusin, M., Fishler, K: 1985, ‘Successful adjustment to society in young adults with phenylketonuria,’ Journal of Inherited Metabolic Disorders 8, 209–211.
Koch, R., et al.: 1993, ‘The North American Collaborative Study of Maternal Phenylketonuria. Status Report 1993,’ American Journal of Diseases of Children 147, 1224–1230.
Koch, R., et al.: 1994, ‘The International Collaborative Study of maternal phenylketonuria: Status Report 1994,’ Acta Paediatrica Supplement 407, 111–119.
Laughlin, H.H.: 1914, Report of the Committee to Study and to Report on the Best Practical Means of CuttingOff the DefectiveGerm-Plasminthe American Population.1.The Scope of the Committee’s Work, Bulletin No. 10A, Eugenics Record Office, Cold Spring Harbor, New York.
Levy, H.L.: 1991, ‘Nutritional therapy ininborn errors of metabolism,’ in R.J. Desnick (ed.), Treatment of Genetic Diseases, Churchill and Livingstone, New York.
Levy, H.L. and Ghavami, M.: 1996, ‘Maternal phenylketonuria: A metabolic teratogen,’ Teratology 53, 176–184.
Lewontin, R.C.: 1992, ‘The dream of the human genome,’ The New York Review of Books 39; reprinted in Lewontin, R.C.: 1993, The Doctrine of DNA, Penguin Books, New York, pp. 60–83.
Lewontin, R.C.: 1993, The Doctrine of DNA, Penguin Books, New York.
Mabry, C.C.: 1991, ‘Status report on Phenylketonuria treatment,’ American Journal of Diseases of Childhood 145, 33.
Magnus, D.: 1996, ‘Gene therapy and the concept of genetic disease,’ available online at ‘Ethics and Genetics: A Global Conversation,’ Glenn McGee (ed.), http://www.med.upenn.edu/bioethic/genetics.html.
Mann, J.M.: 1997, ‘Medicine and public health, ethics and human rights,’ Hastings Center Report 27 (May–June), 6–13.
Mathieu, D.: 1996, Preventing Prenatal Harm: Should the State Intervene? Georgetown University Press, Washington, D.C.
Mazzocco, M.M., et al.: 1994, ‘Cognitivedevelopmentamongchildrenwithearly-treated phenylketonuria.’ Developmental Neuropsychology 10, 133–151.
McGee, G.: 1997, The Perfect Baby: A Pragmatic Approach to Genetics, Rowman and Littlefield, Lanham, MD.
McKeown, T.: 1976, The Role of Medicine: Dream, Mirage or Nemesis, Nuffield Provincial Hospitals Trust, London.
McKinlay, J.B., McKinlay, S.M.: 1977, ‘The questionable contribution of medical measures to the decline in mortality in the United States in the twentieth century,’ Health and Society (Summer), 405–428.
Millner, B.N.: 1993, ‘Insurance coverage of special foods needed in the treatment of phenylketonuria,’ Public Health Reports 108 (Jan.-Feb.), 60–65.
Milunsky, A.M., Annas, G.J. (eds.): 1980, Genetics and the Law II, Plenum Press, New York.
Montagu, A.: 1959, Human Heredity, World Publishing, Cleveland.
Murray, T.H.: 1996, The Worth of a Child, University of California Press, Berkeley.
Office of Technology Assessment, U.S. Congress: 1988, ‘Newborn screening for congenital disorders,’ in Healthy Children: Investing in the Future, USGPO, Washington, D.C., pp. 93–16.
O’Flynn, M.E.: 1992, ‘Newborn screening for Phenylketonuria: Thirty years of progress,’ Current Problems in Pediatrics 22 (April), 159–165.
Paul, D.B.: 1992, ‘Eugenic anxieties, social realities, and political choices,’ Social Research 59 (Fall), 663–683.
Paul, D.B.: 1997, ‘From eugenics to medical geneticism,’ Journal of Policy History 9: 96–116.
Paul, D.B.: 1998, ‘Competing agendas, converging stories: The case of PKU,’ in The Politics of Heredity: Essays on Eugenics, Biomedicine, and the Nature-Nurture Debate, SUNY Press, Albany, and M. Fortun and E. Mendelsohn, (eds.), The Practices of Human Genetics, Kluwer, Dordrecht (in press).
Paul, D.B., Spencer, H.G.: 1995, ‘The hidden science of eugenics,’ Nature 374 (March 23), 302–304.
Paul, D.B., Edelson, P.J.: 1998, ‘The struggle over metabolic screening,’ in S. de Chadarevian and H. Kamminga (eds.), Molecularising Biology and Medicine: New Practices and Alliances, 1930s-1970s, Harwood Academic Publishers, Reading, pp. 203–220.
Pennington, B.F., et al.: 1985, ‘Neuropsychological deficits in early-treated phenylketonuric Children,’ American Journal of Mental Deficiency 5, 467–474.
Penrose, L S.: 1946, ‘Phenylketonuria: A problem in eugenics,’ Lancet (June 29), 949–953.
Powers, M.: 1996, ‘The moral right to have children,’ in R.R. Faden and N.E. Kass, (eds.), HIV, AIDS and Childbearing: Public Policy, Private Lives, Oxford University Press, New York, pp. 320–344
Purdy, L.: 1995, ‘Loving future people,’ in J.C. Callahan (ed.), Reproduction, Ethics, and the Law, Indiana University Press, Bloomington, pp. 300–327.
Reed, S.: 1964, Parenthood and Heredity, John Wiley, New York.
Ris, M.D. et al.: 1994, ‘Early-treated Phenylketonuria: Adult neuropsychologic outcome,’ Journal of Pediatrics 124, 388–392.
Rosenberg. S.S.: 1962, ‘A new life for Karen,’ Family Weekly. (December 16), 6–7.
Schmidt, H., et al.: 1996, ‘Intelligence and professional career in young adults treated early for phenylketonuria,’ European Journal of Pediatrics 155(Suppl 1), S97–S100.
Smith, I.: 1994, ‘Treatment of phenylalanine hydroxylase deficiency,’ Acta Paediatrica Supplement 407, 60–65.
Smith, I., Beasley, M.G., Ades, A.E.: 1990, ‘Intelligence and quality of dietary treatment in phenylketonuria,’ Archives of Disease in Childhood 65, 472–478.
Smith, I., Beasley, M.G., Ades, A.E.: 1991, ‘Effect on intelligence of relaxing the low phenylalanine diet in phenylketonuria,’ Archives of Disease in Childhood 66, 311–316.
Steinbock B. and McClamrock, R.: 1994, ‘When is birth unfair to the child?’ Hastings Center Report 24, 15–21.
Treacy, E., Childs, B., Scriver, C.R.: 1995, ‘Response to treatment in hereditary metabolic disease: 1993 survey and 10-year comparison,’ American Journal of Human Genetics 56, 359–367.
U.S. Preventive Services Task Force: 1996, Guide to Clinical Preventive Services, 2nd ed., Williams and Wilkins, Baltimore.
van Dijck, J.: 1998, ImagEnation: Popular Images of Genetics, New York University Press, New York.
Waisbren, S.E., et al.: 1995, ‘Psychosocial factors in maternal phenylketoneuria: Women’s adherence to medical recommendations,’ American Journal of Public Health 85, 1636–1641.
Waisbren, S.E., et al.: 1994, ‘Review of neuropsychological functioning in treated phenylketonuria: An information processing approach,’ Acta Paediatrica Supplement 407, 98–103.
Waisbren, S.E., Levy, H.L.: 1991, ‘Agoraphobia in Phenylketonuria.’ Journal of Inherited Metabolic Disorders 3, 149–153.
Weglage, J., et al.: 1993, ‘School performance and intellectual outcome in adolescents with Phenylketonuria,’ Acta Paediatrica 82,582–586.
Weglage, J., et al.: 1995, ‘Neurological findings in earlytreated phenylketonuria,’ Acta Paediatrica 84, 411–415.
Weglage, J., et al.: 1996a, ‘Deficits in selective and sustained attention processes in early treated children with Phenylketonuria—result of impaired frontal lobe functions,’ European Journal of Pediatrics 155, 200–204.
Weglage, J., et al.: 1996b, ‘Psychosocial aspects in Phenylketonuria,’ European Journal of Pediatrics 155 [Suppl 1] S101–S104.
Welsh, M.C., et al.: 1990, ‘Neuropsychology of early treated Phenylketonuria: Specific executive function deficits,’ Child Development 61, 1697–1713.
Wertz, D.C.: 1997a, ‘Society and the not-so-new genetics: What are we afraid of? Some Future Predictions from a social scientist,’ Journal of Contemporary Health Law and Policy 13, 299–346.
Wertz, D.C.: 1997b, ‘Data distributed at the ‘Workshop on Eugenic Thought and Practice: A Reappraisal towards the End of the Twentieth Century,’ (May 26–29), Van Leer Institute, Jerusalem. (Published in part as Wertz, D.C.:1998, ‘Eugenics is alive and well: A survey of genetics professionals around the world,’ Science in Context 11, 493–510.)
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Paul, D.B. (2000). PKU and Procreative Liberty: Historical and Ethical Considerations. In: Wear, S., Bono, J.J., Logue, G., McEvoy, A. (eds) Ethical Issues in Health Care on the Frontiers of the Twenty-First Century. Philosophy and Medicine, vol 65. Springer, Dordrecht. https://doi.org/10.1007/0-306-46879-4_9
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