Medicine, Health Care and Philosophy

, Volume 12, Issue 2, pp 187–202 | Cite as

Preimplantation genetic diagnosis: does age of onset matter (anymore)?

Scientific contribution

Abstract

The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as ‘serious’ conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic disorder); potential for therapy; rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled ‘serious’. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the ‘seriousness’ of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a ‘serious’ condition is itself problematic and in certain ways morally misleading.

Keywords

Age of onset Disease Ethics Genetics Impairment Preimplantation genetic diagnosis Quality of life Reproductive choice Suffering 

References

  1. Albrecht, G.L., and P.J. Devlieger. 1999. The disability paradox: High quality of life against all odds. Social Science & Medicine 48 (8): 977–988.CrossRefGoogle Scholar
  2. Alderson, P. 2001. Down’s syndrome: Cost, quality and value of life. Social Science & Medicine 53 (5): 627–638.CrossRefGoogle Scholar
  3. Andrews, L.B. 1994. Assessing genetic risks: Implications for health and social policy. Washington, DC: National Academy Press.Google Scholar
  4. Arias, E. 2004. United States life tables, 2002. National Vital Statistics Reports 53 (6): 1–39.PubMedGoogle Scholar
  5. Asch, A. 2003. Disability equality and prenatal testing: Contradictory or compatible? Florida State University Law Review 30 (2): 315–342.PubMedGoogle Scholar
  6. Baily, M.A. 2000. Why I had amniocentesis. In Prenatal testing and disability rights, ed. E. Parens and A. Asch, 64–71. Washington, DC: Georgetown University Press.Google Scholar
  7. Baruch, S., G. Javitt, J. Scott, and K. Hudson. 2004. Reproductive Genetic testing: Issues and options for policymakers. Washington, DC: Genetics & Public Policy Center. http://www.dnapolicy.org/pub.reports.php?action=detail&report_id=7. Accessed 20 Dec 2007.
  8. Baum, M. 2006. Pre-implantation genetic diagnosis (PGD): The spectre of eugenics or a “no brainer”. International Journal of Surgery 4 (3): 144–145.PubMedCrossRefGoogle Scholar
  9. Baxter, C., K. Poonia, L. Ward, and Z. Nadirshaw. 1995. A longitudinal study of parental stress and support: From diagnosis of disability to leaving school. International Journal of Disability, Development and Education 42: 125–136.CrossRefGoogle Scholar
  10. Beck, U. 1992. Risk society: Towards a new modernity. London: Sage Publications.Google Scholar
  11. Berger, S. 2007, July 30. A challenge to progressives on choice. The Nation. http://www.thenation.com/doc/20070730/berger. Accessed 20 Dec 2007.
  12. Berry, K. 2006a. Authority policy on the use of PGD for lower penetrance inherited cancer susceptibility conditions (Report No. HFEA (10/05/06) 311—Agenda Item 7). United Kingdom: Human Fertilisation & Embryology Authority. http://212.49.193.187/docs/PGD_-_choices_and_boundaries.pdf. Accessed 20 Dec 2007a.
  13. Berry, K. 2006b. PGD for inherited cancer susceptibility (Report No. ELC (02-06) 2). United Kingdom: Human Fertilisation & Embryology Authority. http://www.hfea.gov.uk/docs/2006-02-14_ELC_paper_choices_and_boundaries.pdf. Accessed 26 July 2008b.
  14. Berry, K., and S. Croker. 2006. Analysis of the responses to choices and boundaries—Annex. A (Report No. ELC (02-06) 2). United Kingdom: Human Fertilisation & Embryology Authority. http://www.hfea.gov.uk/docs/ELC_paper_Annex_A_Choices_and_boundaries.pdf. Accessed 26 July 2008.
  15. Berry, K., and J. Tizzard. 2005. Information gathering for emerging issues in PGD Report (Report No. SCAG/ELC(06/05)01. Trim record no. 05/24322). United Kingdom: Human Fertilisation & Embryology Authority. http://www.hfea.gov.uk/docs/2005-06-16_SCAG_ELC__06_05__01_-_website_version.pdf. Accessed 27 Aug 2008.
  16. Botkin, J. 2000. Line drawing: Developing professional standards for prenatal diagnostic services. In Prenatal testing and disability rights, ed. E. Parens and A. Asch, 288–307. Washington, DC: Georgetown University Press.Google Scholar
  17. Botkin, J.R. 1995. Fetal privacy and confidentiality. The Hastings Center Report 25 (5): 32–39.PubMedCrossRefGoogle Scholar
  18. Brülde, B. 2000. On how to define the concept of health: A loose comparative approach. Medicine, Health Care and Philosophy 3 (3): 305–308.Google Scholar
  19. Buchanan, A.E., D.W. Brock, N. Daniels, and D. Wikler. 2000. From chance to choice: Genetics and justice. Cambridge, UK: Cambridge University Press.Google Scholar
  20. Burke, C., and J.B. McDaniel. 1991. A special kind of hero Chris Burke’s own story, 1st ed. New York: Doubleday.Google Scholar
  21. Cahill, B.M., and L.M. Gidden. 1996. Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities. American Journal of Mental Retardation 101: 149–160.PubMedGoogle Scholar
  22. Carr, J.H. 1995. Down’s syndrome children growing up. Cambridge England: Cambridge University Press.Google Scholar
  23. Chadwick, R., H. ten Have, J. Husted, M. Levitt, T. McGleenan, D. Shickle, and U. Wiesing. 1998. Genetic screening and ethics: European perspectives. The Journal of Medicine and Philosophy 23 (3): 255–273.PubMedCrossRefGoogle Scholar
  24. Chapman, E. 2002. Difficult decisions: Social and ethical implications of changing medical technology. Community Genetics 5 (2): 110–119.PubMedCrossRefGoogle Scholar
  25. Darby, H. 2005. Output from the information gathering stage of the emerging issues in PGD work—Annex. B: Table of conditions (Report No. SCAG/ELC (06/005)01 Annex. B). United Kingdom: Human Fertilisation & Embryology Authority. http://www.hfea.gov.uk/docs/2005-06-16_SCAG_ELC__06_05__01_-_Annex_B_-_website_version.pdf. Accessed 27 Aug 2008.
  26. Dean, N.L., and A. Ao. 2002. Genetic prenatal and preimplantation diagnosis of trinucleotide repeat disorders. Expert Review of Neurotherapeutics 2 (4): 561–572.CrossRefPubMedGoogle Scholar
  27. Duster, T. 2003. Backdoor to eugenics, 2nd ed. New York: Routledge.Google Scholar
  28. Ehrich, K., C. Williams, B. Farsides, J. Sandall, and R. Scott. 2007. Choosing embryos: Ethical complexity and relational autonomy in staff accounts of PGD. Sociology of Health & Illness 29 (7): 1–16.Google Scholar
  29. Ethics & Law Committee. 2006. Minutes of the eleventh meeting of the HFEA (Report No. TRIM 06/2217). United Kingdom: Human Fertilisation & Embryology Authority. http://www.hfea.gov.uk/docs/2006-02-14_Committee_ELC__02-06__Minutes.pdf. Accessed 26 July 2008.
  30. Fasouliotis, S.J., and J.G. Schenker. 1998. Preimplantation genetic diagnosis principles and ethics. Human Reproduction 13 (8): 2238–2245.PubMedCrossRefGoogle Scholar
  31. Ferguson, P.M. 2001. Mapping the family: Disability studies and the exploration of parental response to disability. In Handbook of disability studies, ed. G.L. Albrecht, K.D. Seelman, and M. Bury, 373–395. Thousand Oaks, CA: Sage Publications.Google Scholar
  32. Ferguson, P.M., A. Gartner, and D.K. Lipsky. 2000. The experience of disability in families: A synthesis of research and parent narratives. In Prenatal testing and disability rights, ed. E. Parens and A. Asch, 72–94. Washington, DC: Georgetown University Press.Google Scholar
  33. Firth, H.V., and R.H. Lindenbaum. 1992. UK clinicians’ knowledge of and attitudes to the prenatal diagnosis of single gene disorders. Journal of Medical Genetics 29 (1): 20–23.PubMedCrossRefGoogle Scholar
  34. Fleischmann, A. 2004. Narratives published on the internet by parents of children with autism: What do they reveal and why is it important? Focus on Autism and Other Developmental Disabilities 19 (1): 35–43.CrossRefGoogle Scholar
  35. Galjaard, H., and International Bioethics Committee (IBC). 2003. Report of the IBC on pre-implantation genetic diagnosis and germ-line intervention (Report No. SHS-EST/02/CIB–9/2 (Rev.3)). Paris: United Nations Educational, Scientific and Cultural Organisation (UNESCO). http://portal.unesco.org/shs/en/files/2397/10554294261ReportfinalPGD_en.pdf/ReportfinalPGD_en.pdf. Accessed 30 July 2007.
  36. Gallimore, R., T.S. Weisner, S.Z. Kaufman, and L.P. Bernheimer. 1989. The social construction of ecocultural niches: Family accommodation of developmentally delayed children. American Journal of Mental Retardation 94 (3): 216–230.PubMedGoogle Scholar
  37. GeneWatch UK. (2006). Submission to the HFEA consultation ‘Choices and boundaries’, January 2006. http://www.genewatch.org/sub-396533#Consultation%20Responses. Accessed 14 Aug 2008.
  38. Glannon, W. 1998. Genes, embryos, and future people. Bioethics 12 (3): 187–211.PubMedCrossRefGoogle Scholar
  39. Glover, J. 2007. Choosing our children. Oxford and New York: Oxford University Press.Google Scholar
  40. Goldman, B. 2007. Reproductive medicine: The first cut. Nature 445 (7127): 479–480.PubMedCrossRefGoogle Scholar
  41. Great Britain, Committee of Inquiry into Human Fertilisation, Embryology, and M. Warnock. 1985. A question of life: The Warnock report on human fertilisation and embryology. Oxford: Blackwell.Google Scholar
  42. Handyside, A. 2007. PGD for late-onset disease: Genetic testing and ethical issues. In 14th world congress of the international society of IVF. Montreal: ISIVF, Sept. 17, 2007 (unpublished).Google Scholar
  43. Handyside, A.H., J.K. Pattinson, R.J. Penketh, J.D. Delhanty, R.M. Winston, and E.G. Tuddenham. 1989. Biopsy of human preimplantation embryos and sexing by DNA amplification. Lancet 1 (8634): 347–349.PubMedCrossRefGoogle Scholar
  44. Harmon, A. 2004, December 20. ‘How about not ‘curing’ us, some autistics are pleading’. The New York Times. http://www.nytimes.com/2004/12/20/health/20autism.html?ex=1261285200&en=131813d47008d1ae&ei=5088&partner=rssnyt. Accessed 20 Aug 2007.
  45. Harper, J.C., K. Boelaert, J. Geraedts, G. Harton, W.G. Kearns, C. Moutou, N. Muntjewerff, S. Repping, S. SenGupta, P.N. Scriven, J. Traeger-Synodinos, K. Vesela, L. Wilton, and K.D. Sermon. 2006. ESHRE PGD consortium data collection V: Cycles from January to December 2002 with pregnancy follow-up to October 2003. Human Reproduction 21 (1): 3–21.PubMedCrossRefGoogle Scholar
  46. Harris, J., and S. Holm. 1998. The future of human reproduction: Ethics, choice, and regulation. Oxford: Clarendon Press.Google Scholar
  47. Henaghan, M., R. Wee, and T. Green. 2006. Preimplantation genetic diagnosis—monitoring system for health and social effects recommended. http://www.lawfoundation.org.nz/news/read.php?i=37. Accessed 16 June 2008.
  48. Hudson, K., J. Scott, and A. Kalfoglou, ed. 2002. Public awareness and attitudes about reproductive genetic technology. Washington, DC: Genetics & Public Policy Center. http://www.dnapolicy.org/images/reportpdfs/PublicAwarenessAndAttitudes.pdf. Accessed 21 Dec 2007.
  49. Hudson, K.L. 2006. Preimplantation genetic diagnosis: Public policy and public attitudes. Fertility and Sterility 85 (6): 1638–1645.PubMedCrossRefGoogle Scholar
  50. Hudson, K., S. Baruch, and G. Javitt. 2005. Genetic testing of human embryos: Ethical challenges and policy choices. In Expanding horizons in bioethics, ed. A. Galston and C. Peppard, 103–122 (1–32 for online version). Dodrecht: Springer. http://www.dnapolicy.org/resources/GeneticTestingEthicalChallenges.pdf. Accessed 16 Oct 2008.
  51. Human Fertilisation & Embryology Authority. 2004. List of conditions licensed by the Human Fertilisation & Embryology Authority up to date from December 2004. United Kingdom: HFEA. http://www.hfea.gov.uk/docs/Public_PGD_list_up_to_December_2004.pdf. On file with author. Accessed 20 Dec 2007.
  52. Human Fertilisation & Embryology Authority. 2005. Background to choices & boundaries—should people be able to select embryos free from an inherited susceptibility to cancer? United Kingdom: HFEA. http://www.hfea.gov.uk/docs/Choices_and_Boundaries.pdf. Accessed 21 Dec 2007.
  53. Human Fertilisation & Embryology Authority. 2006a. Authority decision on the use of PGD for lower penetrance, later onset inherited conditions. United Kingdom: HFEA. http://www.hfea.gov.uk/cps/rde/xbcr/SID-3F57D79B-3FFA7953/hfea/The_Authority_decision_-_Choices_and_boundaries.pdf. Accessed 21 Dec 2007.
  54. Human Fertilisation & Embryology Authority. 2006b. Choices & boundaries report 2006: A summary of responses to the HFEA public discussion. United Kingdom: HFEA. http://www.hfea.gov.uk/docs/Choices_and_boundaries_Report_2006.pdf. Accessed 21 Dec 2007.
  55. Human Fertilisation & Embryology Authority. 2006c. HFEA—authority decision on PGD policy. United Kingdom: HFEA. http://www.hfea.gov.uk/cps/rde/xchg/SID-3F57D79B-0D0A79FB/hfea/hs.xsl/1124.html. Accessed 21 Dec 2007.
  56. Human Fertilisation & Embryology Authority and Advisory Committee on Genetic Testing. 2000. Consultation document on preimplantation genetic diagnosis. United Kingdom: HFEA. http://www.hfea.gov.uk/docs/PGD_document.pdf. Accessed 21 Dec 2007.
  57. Human Fertilisation & Embryology Authority and Human Genetics Commission. 2001. Outcome of the public consultation on preimplantation genetic diagnosis. United Kingdom: HFEA. http://www.hfea.gov.uk/cps/rde/xbcr/SID-3F57D79B-FEB79DDD/hfea/PGD_outcome.pdf. Accessed 21 Dec 2007.
  58. Human Fertilisation & Embryology Authority and United Kingdom Parliament. 2003. Code of practice, 6th ed. United Kingdom: HFEA. http://212.49.193.187/cps/rde/xbcr/SID-3F57D79B-7D92DD39/hfea/Code_of_Practice_Sixth_Edition_-_final.pdf. Accessed 21 Dec 2007.
  59. Human Fertilisation & Embryology Authority and United Kingdom Parliament. 2007. Code of Practice, 7th ed.—R. 3. United Kingdom: HFEA. http://www.hfea.gov.uk/docs/CodeOfPracticeVR_3.pdf. Accessed 21 July 2008.
  60. Human Genetics Commission (United Kingdom). 2006. Making babies: Reproductive decisions and genetic technologies. United Kingdom: Human Genetics Commission. http://www.hgc.gov.uk/UploadDocs/DocPub/Document/Making%20Babies%20Report%20-%20final%20pdf.pdf. Accessed 21 Dec 2007.
  61. Johnston, C. 1993. New program at Ontario hospital will screen preembryos for genetic-diseases. Canadian Medical Association Journal 148 (4): 605–608.PubMedGoogle Scholar
  62. Kalfoglou, A., K. Suthers, J. Scott, and K. Hudson. 2004. Reproductive genetic testing: What America thinks. Washington, DC: Genetics & Public Policy Center. http://www.dnapolicy.org/images/reportpdfs/ReproGenTestAmericaThinks.pdf. Accessed 21 Dec 2007.
  63. Kalfoglou, A.L., J. Scott, and K. Hudson. 2005. PGD patients’ and providers’ attitudes to the use and regulation of preimplantation genetic diagnosis. Reproductive Biomedicine Online 11 (4): 486–496.PubMedGoogle Scholar
  64. King, D.S. 1999. Preimplantation genetic diagnosis and the ‘new’ eugenics. Journal of Medical Ethics 25 (2): 176–182.PubMedCrossRefGoogle Scholar
  65. Kingsley, J., and M. Levitz. 1994. Count us in: Growing up with Down syndrome (1st Harvest ed.). New York: Harcourt Brace & Co.Google Scholar
  66. Klipstein, S. 2005. Preimplantation genetic diagnosis: Technological promise and ethical perils. Fertility and Sterility 83 (5): 1347–1353.PubMedCrossRefGoogle Scholar
  67. Knoppers, B.M., and R.M. Isasi. 2004. Regulatory approaches to reproductive genetic testing. Human Reproduction 19 (12): 2695–2701.PubMedCrossRefGoogle Scholar
  68. Knoppers, B.M., S. Bordet, and R.M. Isasi. 2006. Preimplantation genetic diagnosis: An overview of socio-ethical and legal considerations. Annual Review of Genomics and Human Genetics 7: 201–221.PubMedCrossRefGoogle Scholar
  69. Krahn, T. 2007. Where are we going with preimplantation genetic diagnosis? Canadian Medical Association Journal 176 (10): 1445–1446.PubMedCrossRefGoogle Scholar
  70. Krauss, M.W. 1993. Child-related and parenting stress: Similarities and differences between mothers and fathers of children with disabilities. American Journal of Mental Retardation 97 (4): 393–404.PubMedGoogle Scholar
  71. Kuhse, H., and P. Singer. 1985. Should the baby live? The problem of handicapped infants. Oxford; New York; Melbourne: Oxford University Press.Google Scholar
  72. Lancaster, J.M., R.W. Wiseman, and A. Berchuck. 1996. An inevitable dilemma: Prenatal testing for mutations in the BRCA1 breast-ovarian cancer susceptibility gene. Obstetrics and Gynecology 87 (2): 306–309.PubMedCrossRefGoogle Scholar
  73. Larcher, V. 2007. Ethical issues in respect of children born after assisted reproduction technologies. Archives of Disease in Childhood 92 (8): 670–671.PubMedCrossRefGoogle Scholar
  74. Lashwood, A., and F. Flinter. 2001. Clinical and counselling implications of preimplantation genetic diagnosis for Huntington’s disease in the UK. Human Fertility (Cambridge, England) 4 (4): 235–238.Google Scholar
  75. Lilani, A. 2005. Ethical issues and policy analysis for genetic testing: Huntington’s disease as a paradigm for diseases with a late onset. Human Reproduction and Genetic Ethics 11 (2): 28–34.PubMedGoogle Scholar
  76. McFarland, D. 1994. Perspective. In Down syndrome: Living and learning in the community, ed. L. Nadel, D. Rosenthal, National Down Syndrome Society (U.S.), and European Down Syndrome Association, 27–28. New York, Chichester: Wiley-Liss.Google Scholar
  77. Mills, P. 2003. Importation of sorted sperm (Policy Briefing Note), Link currently non-funcional. On file with author. Accessed 26 Aug 2007.Google Scholar
  78. Montes, G., and J.S. Halterman. 2007. Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics 119 (5): E1040–E1046.PubMedCrossRefGoogle Scholar
  79. Munné, S., M. Sandalinas, T. Escudero, E. Velilla, R. Walmsley, S. Sadowy, J. Cohen, and D. Sable. 2003. Improved implantation after preimplantation genetic diagnosis of aneuploidy. Reproductive Biomedicine Online 7 (1): 91–97.PubMedGoogle Scholar
  80. Munthe, C. 1999. Pure selection: The ethics of preimplantation genetic diagnosis and choosing children without abortion. Göteborg: Acta Universitatis Gothoburgensis.Google Scholar
  81. Munthe, C. 2006. Preimplantation genetic diagnosis: Ethical aspects. Encyclopedia of Life Sciences. Online publication (doi: 10.1038/npg.els.0005223), 1–5.
  82. Murray, T.H. 1996. The worth of a child. Berkeley: University of California Press.Google Scholar
  83. National Institutes of Health. 2008. Gene tests. http://www.genetests.org/. Accessed 16 Oct 2008.
  84. National Statistics Online (UK). 2004. Life expectancy. http://www.statistics.gov.uk/cci/nugget.asp?id=881. Accessed 21 Dec 2007.
  85. Paez, M. 1995. Perspective. In Down syndrome: Living and learning in the community, ed. L. Nadel, D. Rosenthal, National Down Symdrome Society, (U.S.), and European Down Syndrome Association, 205–205. New York: Wiley-Liss.Google Scholar
  86. Palca, J. 2006, December 20. Screening embryos for disease—all things considered. NPR [National Public Radio transcript] http://www.npr.org/templates/story/story.php?storyId=6653837. Accessed 28 July 2008.
  87. Parens, E., and L.P. Knowles. 2007. Reprogenetics and public policy: Reflections and recommendations. In Reprogenetics: Law, policy, and ethical issues, ed. L.P. Knowles and G.E. Kaebnick, 253–294. Baltimore: The Johns Hopkins University Press.Google Scholar
  88. Parens, E., and T.H. Murray. 2002. Preimplantation genetic diagnosis: Beginning a long conversation. Lahey Clinic Medical Ethics Journal 9 (2, Spring): 1–2 & 8.Google Scholar
  89. Parfit, D. 1984. Reasons and persons. Oxford, Oxfordshire: Clarendon Press.Google Scholar
  90. Pessione, H.K. 2001. North American ambivalence toward Down syndrome: Using feminists resources to understand and address a fundamental tension. Thesis publication on file with author. Halifax, NS: Dalhousie University.Google Scholar
  91. Platteau, P., C. Staessen, A. Michiels, S.A. Van, I. Liebaers, and P. Devroey. 2006. Which patients with recurrent implantation failure after IVF benefit from PGD for aneuploidy screening? Reproductive Biomedicine Online 12 (3): 334–339.PubMedCrossRefGoogle Scholar
  92. Post, S.G. 1992. Huntington’s disease: Prenatal screening for late onset disease. Journal of Medical Ethics 18 (2): 75–78.PubMedCrossRefGoogle Scholar
  93. Ramsey, P. 1973. Screening: An ethicist’s view. In Ethical issues in human genetics: Genetic counselling and the use of genetic knowledge, ed. B. Hilton, D. Callahan, M. Harris, P. Condliffe, and B. Berkley, 147–161. New York: Plenum Press.Google Scholar
  94. Rao, R. 2004. Preimplantation genetic diagnosis and reproductive equality. Gender Medicine 1 (2): 64–69.PubMedCrossRefGoogle Scholar
  95. Ray, P.F. 2006. Ethics and genetics of carrier embryos. Human Reproduction 21 (10): 2722–2723.PubMedCrossRefGoogle Scholar
  96. Roberts, J.C. 2002. Customizing conception: A survey of preimplantation genetic diagnosis and the resulting social, ethical, and legal dilemmas. Duke Law & Technology Review, 0012: 1–51. http://www.law.duke.edu/journals/dltr/articles/2002dltr0012.html#pagetop.
  97. Roberts, C., and S. Franklin. 2004. Experiencing new forms of genetic choice: Findings from an ethnographic study of preimplantation genetic diagnosis. Human Fertility (Cambridge, England) 7 (4): 285–293.Google Scholar
  98. Robertson, J.A. 1994. Children of choice: Freedom and the new reproductive technologies. Princeton: Princeton University Press.Google Scholar
  99. Robertson, J.A. 2003a. Extending preimplantation genetic diagnosis: Medical and non-medical uses. Journal of Medical Ethics 29 (4): 213–216.PubMedCrossRefGoogle Scholar
  100. Robertson, J.A. 2003b. Extending preimplantation genetic diagnosis: The ethical debate. Ethical issues in new uses of preimplantation genetic diagnosis. Human Reproduction 18 (3): 465–471.PubMedCrossRefGoogle Scholar
  101. Ruzicka, R. 2001. Book review of Pure selection: The ethics of preimplantation genetic diagnosis and choosing children without abortion. Journal of Genetic Counseling 10 (4): 353–356.CrossRefGoogle Scholar
  102. Saletan, W. 2006, May 19. Cut-off genes: Our gentle descent toward eugenics. Slate. http://www.slate.com/id/2141968/. Accessed 21 Dec 2007.
  103. Savulescu, J. 2002. Deaf lesbians, “designer disability” and the future of medicine. British Medical Journal 325 (7367): 771–773.PubMedCrossRefGoogle Scholar
  104. Saxton, M. 1988. Prenatal screening and discriminating attitudes about disability. In Embryos, ethics, and women’s rights: Exploring the new reproductive technologies, ed. E.H. Baruch, A.F. D’Adamo, and J. Seager, 217–224. New York: Haworth Press.Google Scholar
  105. Scott, R. 2005. The uncertain scope of reproductive autonomy in preimplantation genetic diagnosis and selective abortion. Medical Law Review 13 (3): 291–327.CrossRefGoogle Scholar
  106. Scott, R. 2007. Why parents have no duty to select “the best” children. Royal Society of Medicine 2 (3): 149–156.CrossRefGoogle Scholar
  107. Scott, B.S., L. Atkinson, H.L. Minton, and T. Bowman. 1997. Psychological distress of parents of infants with Down syndrome. American Journal of Mental Retardation 102 (2): 161–171.PubMedCrossRefGoogle Scholar
  108. Sermon, K.D., A. Michiels, G. Harton, C. Moutou, S. Repping, P.N. Scriven, S. SenGupta, J. Traeger-Synodinos, K. Vesela, S. Viville, L. Wilton, and J.C. Harper. 2007. ESHRE PGD consortium data collection VI: Cycles from January to December 2003 with pregnancy follow-up to October 2004. Human Reproduction 22 (2): 323–336.PubMedCrossRefGoogle Scholar
  109. Shakespeare, T. 2006. ‘Losing the plot?’ medical and activist discourses of contemporary genetics and disability. Sociology of Health & Illness 21: 669–688.CrossRefGoogle Scholar
  110. Sinclair, J. 1993. Don’t mourn for us. Our Voice, the newsletter of Autism Network International 3 (1). http://ani.autistics.org/dont_mourn.html. Accessed 16 Oct 2008.
  111. Singer, E. 2007, March/April. Choosing babies. Technology Review. http://www.technologyreview.com/Biotech/18303/. Accessed 21 Dec 2007.
  112. Smith, G.P., and T.J. Burns. 1994. Genetic determinism or genetic discrimination? The Journal of Contemporory Health Law Policy 11 (1): 23–61.Google Scholar
  113. Soini, S., D. Ibarreta, V. Anastasiadou, S. Ayme, S. Braga, M. Cornel, D.A. Coviello, G. Evers-Kiebooms, J. Geraedts, L. Gianaroli, J. Harper, G. Kosztolanyi, K. Lundin, E. Rodrigues-Cerezo, K. Sermon, J. Sequeiros, L. Tranebjaerg, and H. Kaariainen. 2006. The interface between assisted reproductive technologies and genetics: Technical, social, ethical and legal issues. European Journal of Human Genetics 14 (5): 588–645.PubMedCrossRefGoogle Scholar
  114. Steinbock, B. 2002. Preimplanatation genetic diagnosis and embryo selection. In A Companion to genethics, ed. J. Burley and J. Harris, 175–190. Malden, MA: Blackwell Publishers.Google Scholar
  115. ten Have, H.A. 2003. Genetic advances require comprehensive bioethical debate. Croatian Medical Journal 44 (5): 533–537.PubMedGoogle Scholar
  116. Tengland, P.A. 2006. The goals of health work: Quality of life, health and welfare. Medicine, Health Care and Philosophy 9 (2): 155–167.CrossRefGoogle Scholar
  117. The Council on Ethical and Judicial Affairs, A.M.A. (1994). Ethical issues related to prenatal genetic testing. Archives of Family Medicine 3 (7): 633–642.Google Scholar
  118. Thornhill, A. 2007, April 17. PGD for early onset Alzheimer’s disease: Preventing disease…not the cure. BioNews. http://www.bionews.org.uk/commentary.lasso?storyid=3411. Accessed 28 July 2008.
  119. United Kingdom Parliament. 1990. Human Fertilisation and Embryology Act 1990. London: Her Majesty’s Stationery Office. http://www.opsi.gov.uk/Acts/acts1990/pdf/ukpga_19900037_en.pdf. Accessed 16 Oct 2008.
  120. Wasserman, D. 2003. A choice of evils in prenatal testing. Florida State University Law Review 30 (2): 295–313.PubMedGoogle Scholar
  121. Wasserman, D., and A. Asch. 2006. The uncertain rationale for prenatal disability Screening. Virtual Mentor (American Medical Association), 8.Google Scholar
  122. Watkin, J., and Human Fertilisation & Embryology Authority Ethics & Law Advisory Group. 2007. Preimplantation genetic diagnosis: Decision making tool proposals (Report No. ELAG). United Kingdom: HFEA. http://www.hfea.gov.uk/docs/2007_-_10_-_02_ELAG_paper__PGD.pdf. Accessed 26 July 2008.
  123. Weatherall, D.J. 1991. The new genetics and clinical practice, 3rd ed. Oxford: Oxford University Press.Google Scholar
  124. Wensley, D. 2004. Acceptable limits of reproductive genetics (Report No. A, prepared for the New Zealand Law Foundation). Bioethics Centre, Dunedin School of Medicine, University of Otago. Google Scholar
  125. Wertz, D.C. 2000. Drawing lines: Notes for policymakers. In Prenatal testing and disability rights, ed. E. Parens and A. Asch, 261–287. Washington, DC: Georgetown University Press.Google Scholar
  126. Wertz, D.C., and J.C. Fletcher. 1989. Fatal knowledge? Prenatal diagnosis and sex selection. The Hastings Center Report 19 (3): 21–27.PubMedCrossRefGoogle Scholar
  127. Wertz, D.C., and B.M. Knoppers. 2002. Serious genetic disorders: Can or should they be defined? American Journal of Medical Genetics 108 (1): 29–35.PubMedCrossRefGoogle Scholar
  128. Whittaker, L.A. 1992. The implications of the human genome project for family practice. The Journal of Family Practice 35 (3): 294–301.PubMedGoogle Scholar
  129. Williams, C., K. Ehrich, B. Farsides, and R. Scott. 2007. Facilitating choice, framing choice: Staff views on widening the scope of preimplantation genetic diagnosis in the UK. Social Science & Medicine 65 (6): 1094–1105.CrossRefGoogle Scholar
  130. World Health Organization. 2000. Statement of WHO expert consultation on new developments in human genetics (Report No. WHO/HGN/WG/00.3). Geneva, Switzerland: World Health Organization. http://whqlibdoc.who.int/hq/2000/WHO_HGN_WG_00.3.pdf. Accessed 21 Dec 2007.
  131. Yagel, S., and E. Anteby. 1998. A rational approach to prenatal screening and intervention. Human Reproduction 13 (5): 1126–1128.PubMedGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2008

Authors and Affiliations

  1. 1.Novel Tech Ethics, Bioethics DepartmentDalhousie UniversityHalifaxCanada

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