Patient Education and Counseling
Volume 81, Issue 1 , Pages 53-62 , October 2010

Conceptualizing couples’ decision making in PGD: Emerging cognitive, emotional, and moral dimensions

  • Patricia E. Hershberger

      Affiliations

    • University of Illinois at Chicago, College of Nursing and College of Medicine, Chicago, USA
    • Corresponding Author InformationCorresponding author at: University of Illinois at Chicago, College of Nursing and College of Medicine, 845 S. Damen Ave. (MC 802), Chicago, IL 60612, USA. Tel.: +1 312 996 1305; fax: +1 312 996 8871.
  • ,
  • Penny F. Pierce

      Affiliations

    • University of Michigan, School of Nursing and Institute for Social Research, Ann Arbor, USA

Received 10 April 2009 ,Revised 2 September 2009 ,Accepted 21 November 2009.

References 

  1. Handyside AH, Kontogianni EH, Hardy K, Winston RM. Pregnancies from biopsied human preimplantation embryos sexed by Y-specific DNA amplification. Nature. 1990;344:768–770
  2. Verlinsky Y, Ginsberg N, Lifchez A, Valle J, Moise J, Strom CM. Analysis of the first polar body: preconception genetic diagnosis. Hum Reprod. 1990;5:826–829
  3. International Working Group on Preimplantation Genetics . Preimplantation genetic diagnosis: experience of 3000 clinical cycles. Reprod Biomed Online. 2001;3:49–53
  4. Verlinsky Y, Rechitsky S, Sharapova T, Morris R, Taranissi M, Kuliev A. Preimplantation HLA testing. J Amer Med Assoc. 2004;291:2079–2085
  5. Goossens V, Harton G, Moutou C, Scriven PN, Traeger-Synodinos J, Sermon K, et al. ESHRE PGD Consortium data collection VIII: cycles from January to December 2005 with pregnancy follow-up to October 2006. Hum Reprod. 2008;23:2629–2645
  6. Handyside AH, Lesko JG, Tarín JJ, Winston RM, Hughes MR. Birth of a normal girl after in vitro fertilization and preimplantation diagnostic testing for cystic fibrosis. N Engl J Med. 1992;327:905–909
  7. Genesis Genetics Institute. PGD testing for hundreds of genetic disorders. http://www.genesisgenetics.org (accessed 20/08/2009).
  8. Reproductive Genetics Institute. What single gene disorders can be tested? http://www.reproductivegenetics.com (accessed 20/08/2009).
  9. Verlinsky Y, Rechitsky S, Schoolcraft W, Strom C, Kuliev A. Preimplantation diagnosis for Fanconi anemia combined with HLA matching. J Amer Med Assoc. 2001;285:3130–3133
  10. Sermon K. Current concepts in preimplantation genetic diagnosis (PGD): a molecular biologist's view. Hum Reprod Update. 2002;8:11–20
  11. Verlinsky Y, Cohen J, Munne S, Gianaroli L, Simpson JL, Ferraretti AP, et al. Over a decade of experience with preimplantation genetic diagnosis: a multicenter report. Fertil Steril. 2004;82:292–294
  12. Fiorentino F, Biricik A, Nuccitelli A, De Palma R, Kahraman S, Iacobelli M, et al. Strategies and clinical outcome of 250 cycles of preimplantation genetic diagnosis for single gene disorders. Hum Reprod. 2006;21:670–684
  13. Renwick P, Ogilvie CM. Preimplantation genetic diagnosis for monogenic diseases: overview and emerging issues. Expert Rev Mol Diagn. 2007;7:33–43
  14. Sermon KD, Michiels A, Harton G, Moutou C, Repping S, Scriven PN, et al. ESHRE PGD Consortium data collection VI: cycles from January to December 2003 with pregnancy follow-up to October 2004. Hum Reprod. 2007;22:323–336
  15. Harper JC, de Die-Smulders C, Goossens V, Harton G, Moutou C, Repping S, et al. ESHRE PGD consortium data collection VII: cycles from January to December 2004 with pregnancy follow-up to October 2005. Hum Reprod. 2008;23:741–755
  16. Verlinsky Y, Rechitsky S, Verlinsky O, Masciangelo C, Lederer K, Kuliev A. Preimplantation diagnosis for early-onset Alzheimer disease caused by V717L mutation. J Amer Med Assoc. 2002;287:1018–1021
  17. Rechitsky S, Verlinsky O, Chistokhina A, Sharapova T, Ozen S, Masciangelo C, et al. Preimplantation genetic diagnosis for cancer predisposition. Reprod Biomed Online. 2002;5:148–155
  18. Debrock S, Melotte C, Vermeesch J, Spiessens C, Vanneste E, D’Hooghe TM. Preimplantation genetic screening (PGS) for aneuploidy in embryos after in vitro fertilization (IVF) does not improve reproductive outcome in women over 35: a prospective controlled randomized study. Fertil Steril. 2007;88:S237
  19. Mastenbroek S, Twisk M, van Echten-Arends J, Sikkema-Raddatz B, Korevaar JC, Verhoeve HR, et al. In vitro fertilization with preimplantation genetic screening. N Engl J Med. 2007;357:9–17
  20. Practice Committee of the Society for Assisted Reproductive Technology and the Practice Committee of the American Society for Reproductive Medicine . Preimplantation genetic testing: a practice committee opinion. Fertil Steril. 2007;88:1497–1504
  21. Collins FS, Green ED, Guttmacher AE, Guyer MS. A vision for the future of genomics research. Nature. 2003;422:835–847
  22. President's Council on Bioethics . Reproduction and responsibility: the regulation of new biotechnologies. Washington, DC: President's Council on Bioethics; 2004;
  23. European Societies of Human Genetics and Human Reproduction and Embryology . The need for interaction between assisted reproduction technology and genetics. Eur J Hum Genet. 2006;14:509–511
  24. Woodsong C, Severy LJ. Generation of knowledge for reproductive health technologies: constraints on social and behavioral research. J Soc Issues. 2005;61:193–205
  25. Soini S, Ibarreta D, Anastasiadou V, Aymé S, Braga S, Cornel M, et al. The interface between assisted reproductive technologies and genetics: technical, social, ethical and legal issues. Eur J Hum Genet. 2006;14:588–645
  26. Khoury MJ, Gwinn M, Yoon PW, Dowling N, Moore CA, Bradley L. The continuum of translation research in genomic medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention?. Genet Med. 2007;9:665–674
  27. Klitzman R, Appelbaum PS, Chung W, Sauer M. Anticipating issues related to increasing preimplantation genetic diagnosis use: a research agenda. Reprod Biomed Online. 2008;17:33–42
  28. Preimplantation Genetic Diagnosis International Society (PGDIS) . Guidelines for good practice in PGD. Reprod Biomed Online. 2004;9:430–434
  29. Thornhill AR, deDie-Smulders CE, Geraedts JP, Harper JC, Harton GL, Lavery SA, et al. ESHRE PGD Consortium ‘Best practice guidelines for clinical preimplantation genetic diagnosis (PGD) and preimplantation genetic screening (PGS)’. Hum Reprod. 2005;20:35–48
  30. Patel VL, Kaufman DR, Arocha JF. Emerging paradigms of cognition in medical decision-making. J Biomed Inform. 2002;35:52–75
  31. Cooper H. Synthesizing research: a guide for literature reviews. 3rd ed.. Thousand Oaks, CA: Sage; 1998;
  32. Pergament E. Preimplantation diagnosis: a patient perspective. Prenat Diagn. 1991;11:493–500
  33. Miedzybrodzka Z, Templeton A, Dean J, Haites N, Mollison J, Smith N. Preimplantation diagnosis or chorionic villus biopsy? Women's attitudes and preferences. Hum Reprod. 1993;8:2192–2196
  34. Palomba ML, Monni G, Lai R, Cau G, Olla G, Cao A. Psychological implications and acceptability of preimplantation diagnosis. Hum Reprod. 1994;9:360–362
  35. Snowdon C, Green JM. Preimplantation diagnosis and other reproductive options: attitudes of male and female carriers of recessive disorders. Hum Reprod. 1997;12:341–350
  36. Chamayou S, Guglielmino A, Giambona A, Siciliano S, Di Stefano G, Scibilia G, et al. Attitude of potential users in Sicily towards preimplantation genetic diagnosis for beta-thalassaemia and aneuploidies. Hum Reprod. 1998;13:1936–1944
  37. Alkuraya FS, Kilani RA. Attitude of Saudi families affected with hemoglobinopathies towards prenatal screening and abortion and the influence of religious ruling (Fatwa). Prenat Diagn. 2001;21:448–451
  38. Henneman L, Bramsen I, Van Os TA, Reuling IE, Heyerman HG, van der Laag J, et al. Attitudes towards reproductive issues and carrier testing among adult patients and parents of children with cystic fibrosis (CF). Prenat Diagn. 2001;21:1–9
  39. Hui PW, Lam YH, Chen M, Tang MH, Yeung WS, Ng EH, et al. Attitude of at-risk subjects towards preimplantation genetic diagnosis of alpha- and beta-thalassaemias in Hong Kong. Prenat Diagn. 2002;22:508–511
  40. Katz MG, Fitzgerald L, Bankier A, Savulescu J, Cram DS. Issues and concerns of couples presenting for preimplantation genetic diagnosis (PGD). Prenat Diagn. 2002;22:1117–1122
  41. Lavery SA, Aurell R, Turner C, Castello C, Veiga A, Barri PN, et al. Preimplantation genetic diagnosis: patients’ experiences and attitudes. Hum Reprod. 2002;17:2464–2467
  42. Fernández DO, De Vincentiis S, Chillik CF, Brugo-Olmedo SP. Patients’ opinions regarding preimplantation genetic diagnosis in a Latin American fertility clinic. Fertil Steril. 2004;81:463–464
  43. Roberts C, Franklin S. Experiencing new forms of genetic choice: findings from an ethnographic study of preimplantation genetic diagnosis. Hum Fertil. 2004;7:285–293
  44. Kalfoglou AL, Scott J, Hudson K. PGD patients’ and providers’ attitudes to the use and regulation of preimplantation genetic diagnosis. Repro Biomed Online. 2005;11:486–496
  45. Krones T, Schluter E, Manolopoulos K, Bock K, Tinneberg HR, Koch MC, et al. Public, expert and patients’ opinions on preimplantation genetic diagnosis (PGD) in Germany. Reprod Biomed Online. 2005;10:116–123
  46. Alsulaiman A, Hewison J. Attitudes to prenatal and preimplantation diagnosis in Saudi parents at genetic risk. Prenat Diagn. 2006;26:1010–1014
  47. Menon U, Harper J, Sharma A, Fraser L, Burnell M, ElMasry K, et al. Views of BRCA gene mutation carriers on preimplantation genetic diagnosis as a reproductive option for hereditary breast and ovarian cancer. Hum Reprod. 2007;22:1573–1577
  48. Pope C, Mays N, Popay J. Synthesizing qualitative and quantitative health evidence: a guide to methods. New York: Open University Press; 2007;
  49. Glaser BG. Theoretical sensitivity: advances in the methodology of grounded theory. Mill Valley, CA: Sociology Press; 1978;
  50. Glaser BG, Strauss AL. The discovery of grounded theory. Chicago, IL: Aldine; 1967;
  51. Hempel C. Philosophy of natural science. Upper Saddle River, NJ: Prentice-Hall; 1966;
  52. Pasch LA, Christensen A. Couples facing fertility problems. In:  Schmaling KB,  Sher TG editor. The psychology of couples and illness: theory, research, & practice. Washington, DC: American Psychological Association; 2000;p. 241–267
  53. Edwards A, Elwyn G, Covey J, Matthews E, Pill R. Presenting risk information—a review of the effects of “framing” and other manipulations on patient outcomes. J Health Commun. 2001;6:61–82
  54. Liebaers I, Sermon K, Staessen C, Joris H, Lissens W, Van Assche E, et al. Clinical experience with preimplantation genetic diagnosis and intracytoplasmic sperm injection. Hum Reprod. 1998;13:186–195
  55. Min JK, Breheny SA, MacLachlan V, Healy DL. What is the most relevant standard of success in assisted reproduction? The singleton, term gestation, live birth rate per cycle initiated: the BESST endpoint for assisted reproduction. Hum Reprod. 2004;19:3–7
  56. Centers for Disease Control and Prevention . 2006 assisted reproductive technology success rates: national summary and fertility clinic reports. Atlanta, GA: U.S. Department of Health and Human Services Centers for Disease Control and Prevention; 2008;
  57. Grace J, El-Toukhy T, Scriven P, Ogilvie C, Pickering S, Lashwood A, et al. Three hundred and thirty cycles of preimplantation genetic diagnosis for serious genetic disease: clinical considerations affecting outcome. BJOG. 2006;113:1393–1401
  58. Lewis CM, Pinêl T, Whittaker JC, Handyside AH. Controlling misdiagnosis errors in preimplantation genetic diagnosis: a comprehensive model encompassing extrinsic and intrinsic sources of error. Hum Reprod. 2001;16:43–50
  59. Johnson DS, Rabinowitz M, Cinnioglu C, Keller J, Banjevic M, Singer J, et al. Novel technology for simultaneous reliable measurement of multiple alleles and copy number across 24 chromosomes in single human blastomeres. Fertil Steril. 2008;89:S5
  60. Reddy UM, Wapner RJ, Rebar RW, Tasca RJ. Infertility, assisted reproductive technology, and adverse pregnancy outcomes: executive summary of a National Institute of Child Health and Human Development workshop. Obstet Gynecol. 2007;109:967–977
  61. Nekkebroeck J, Bonduelle M, Desmyttere S, Van den Broeck W, Ponjaert-Kristoffersen I. Mental and psychomotor development of 2-year-old children born after preimplantation genetic diagnosis/screening. Hum Reprod. 2008;23:1560–1566
  62. Tur-Kaspa I, Horwitz A, Ginsberg N, Cieslak J, Rechitsky S, Verlinsky Y. Clinical outcome of PGD. Fertil Steril. 2005;84:S99
  63. Hansen M, Kurinczuk JJ, Bower C, Webb S. The risk of major birth defects after intracytoplasmic sperm injection and in vitro fertilization. N Engl J Med. 2002;346:725–730
  64. Gosden R, Trasler J, Lucifero D, Faddy M. Rare congenital disorders, imprinted genes, and assisted reproductive technology. Lancet. 2003;361:1975–1977
  65. DeBaun MR, Niemitz EL, Feinberg AP. Association of in vitro fertilization with Beckwith–Wiedemann syndrome and epigenetic alterations of LIT1 and H19. Am J Hum Genet. 2003;72:156–160
  66. Inhorn MC. Global infertility and the globalization of new reproductive technologies: illustrations from Egypt. Soc Sci Med. 2003;56:1837–1851
  67. Hudson KL. Preimplantation genetic diagnosis: public policy and public attitudes. Fertil Steril. 2006;85:1638–1645
  68. Jain T. Socioeconomic and racial disparities among infertility patients seeking care. Fertil Steril. 2006;85:876–881
  69. Nachtigall RD. International disparities in access to infertility services. Fertil Steril. 2006;85:871–875
  70. Thaele M, Uszkoreit M. Legislature's impact on the outcome of infertility treatments—the German political contradiction. Pharm Policy Law. 2007;9:221–227
  71. Galpern E. Assisted reproductive technologies: overview and perspective using a reproductive justice framework. Oakland, CA: Center for Genetics and Society, 2007. http://geneticsandsociety.org/downloads/ART.pdf (accessed 14/11/2008).
  72. American Society for Reproductive Medicine. Q6: Is in vitro fertilization expensive? In: Frequently asked questions about infertility. http://www.asrm.org/Patients/faqs.html#Q6: (accessed 31/03/2009).
  73. van Balen F, Verdurmen J, Ketting E. Choices and motivations of infertile couples. Patient Educ Couns. 1997;31:19–27
  74. Katz P, Nachtigall R, Showstack J. The economic impact of the assisted reproductive technologies. Nat Cell Biol. 2002;4:S29–S32
  75. Jain T, Harlow BL, Hornstein MD. Insurance coverage and outcomes of in vitro fertilization. N Engl J Med. 2002;347:661–666
  76. Henne MB, Bundorf MK. Insurance mandates and trends in infertility treatments. Fertil Steril. 2008;89:66–73
  77. Kalfoglou AL, Doksum T, Bernhardt B, Geller G, LeRoy L, Mathews DJ, et al. Opinions about new reproductive genetic technologies: hopes and fears for our genetic future. Fertil Steril. 2005;83:1612–1621
  78. Inhorn MC, Fakih MH. Arab Americans, African Americans, and infertility: barriers to reproduction and medical care. Fertil Steril. 2006;85:844–852
  79. Zeiler K. Reproductive autonomous choice—a cherished illusion? Reproductive autonomy examined in the context of preimplantation genetic diagnosis. Med Health Care Philos. 2004;7:175–183
  80. Banger E, McGee G. Aspiring parents, genotypes and phenotypes: the unexamined myth of the perfect baby. Albany Law Rev. 2005;68:1097–1111
  81. Hershberger PE. Pregnant, donor oocyte recipient women describe their lived experience of establishing the “family lexicon”. J Obstet Gynecol Neonatal Nurs. 2007;36:161–167
  82. Sanfey AG. Decision neuroscience: new directions in studies of judgment and decision making. Curr Dir Psychol Sci. 2007;16:151–155
  83. ESHRE Task Force on Ethics and Law. I. The moral status of the pre-implantation embryo. Hum Reprod. 2001;16:1046–1048
  84. Roberts JC. Customizing conception: a survey of preimplantation genetic diagnosis and the resulting social, ethical, and legal dilemmas. Duke Law Technol Rev. 2002;July 23:
  85. Krones T, Richter G. Preimplantation genetic diagnosis (PGD): European perspectives and the German situation. J Med Philos. 2004;29:623–640
  86. de Melo-Martin I, Rosenwaks Z, Fins JJ. New methods for deriving embryonic stem cell lines: are the ethical problems solved?. Fertil Steril. 2006;86:1330–1332
  87. Freeman JS. Arguing along the slippery slope of human embryo research. J Med Philos. 1996;21:61–81
  88. Lockwood M. The moral status of the human embryo: implications for IVF. Reprod Biomed Online. 2005;10(Suppl 1):17–20
  89. Pickering SJ, Braude PR, Patel M, Burns CJ, Trussler J, Bolton V, et al. Preimplantation genetic diagnosis as a novel source of embryos for stem cell research. Reprod Biomed Online. 2003;7:353–364
  90. Cameron C, Williamson R. Is there an ethical difference between preimplantation genetic diagnosis and abortion?. J Med Ethics. 2003;29:90–92
  91. Robertson JA. Extending preimplantation genetic diagnosis: the ethical debate. Ethical issues in new uses of preimplantation genetic diagnosis. Hum Reprod. 2003;18:465–471
  92. Kass LR. The wisdom of repugnance: why we should ban the cloning of humans. New Repub. 1997;216:17–26
  93. Gillam L. Prenatal diagnosis and discrimination against the disabled. J Med Ethics. 1999;25:163–171
  94. McMahan J. The morality of screening for disability. Reprod Biomed Online. 2005;10(Suppl. 1):129–132
  95. Vergeer MM, van Balen F, Ketting E. Preimplantation genetic diagnosis as an alternative to amniocentesis and chorionic villus sampling: psychosocial and ethical aspects. Patient Educ Couns. 1998;35:5–13
  96. Krahn T. Where are we going with preimplantation genetic diagnosis?. CMAJ. 2007;176:1445–1446
  97. Savulescu J. Procreative beneficence: why we should select the best children. Bioethics. 2001;15:413–426
  98. Savulescu J. In defence of procreative beneficence. J Med Ethics. 2007;33:284–288
  99. Viville S, Pergament D. Results of a survey of the legal status and attitudes towards preimplantation genetic diagnosis conducted in 13 different countries. Prenat Diagn. 1998;18:1374–1380
  100. Suter SM. A brave new world of designer babies?. Berkeley Technol Law J. 2007;22:897–969
  101. Meister U, Finck C, Stöbel-Richter Y, Schmutzer G, Brähler E. Knowledge and attitudes towards preimplantation genetic diagnosis in Germany. Hum Reprod. 2005;20:231–238
  102. Savulescu J. Sex selection—the case for. Med J Aust. 1999;171:373–375
  103. Ethics Committee of the American Society for Reproductive Medicine . Preconception gender selection for nonmedical reasons. Fertil Steril. 2001;75:861–864
  104. Malpani A. PGD and sex selection. Hum Reprod. 2002;17:517
  105. Pennings G. Personal desires of patients and social obligations of geneticists: applying preimplantation genetic diagnosis for non-medical sex selection. Prenat Diagn. 2002;22:1123–1129
  106. Steinbock B. Sex selection: not obviously wrong. Hastings Cent Rep. 2002;32:23–28
  107. Stern JE, Cramer CP, Green RM, Garrod A, DeVries KO. Determining access to assisted reproductive technology: reactions of clinic directors to ethically complex case scenarios. Hum Reprod. 2003;18:1343–1352
  108. Keye WR, Bradshaw KD. A survey of the practices and opinions of the domestic members of the American Society for Reproductive Medicine. Fertil Steril. 2004;82:536–542
  109. Jain T, Missmer SA, Gupta RS, Hornstein MD. Preimplantation sex selection demand and preferences in an infertility population. Fertil Steril. 2005;83:649–658
  110. American College of Obstetricians and Gynecologists (ACOG) . ACOG Committee opinion no. 360: sex selection. Obstet Gynecol. 2007;109:475–478
  111. Williams C, Ehrich K, Farsides B, Scott R. Facilitating choice, framing choice: staff views on widening the scope of preimplantation genetic diagnosis in the UK. Soc Sci Med. 2007;65:1094–1105
  112. Human Fertilisation and Embryology Authority. Code of practice. 7th ed. London: Human Fertilisation and Embryology Authority, 2009. http://www.hfea.gov.uk/code.html (accessed this on 29/12/2009).
  113. von Neumann J, Morgenstern O. Theory of games and economic behavior. 2nd ed.. Princeton, NJ: Princeton University Press; 1947;
  114. Raiffa H. Decision analysis: introductory lectures on choices under uncertainty. New York: Random House; 1968;
  115. Lau RR. Models of decision making. In:  Sears DO,  Huddy L,  Jervis R editor. Oxford handbook of political psychology. New York: Oxford University Press; 2003;p. 19–59
  116. Tversky A, Kahneman D. The framing of decisions and the psychology of choice. Science. 1981;211:453–458
  117. Klein GA, Orasanu J, Calderwood R, Zsambok CE. Decision making in action: models and methods. Norwood, NJ: Ablex; 1993;
  118. Connolly T, Arkes HR, Hammond KR. Judgment and decision making: an interdisciplinary reader. 2nd ed.. New York: Cambridge University Press; 1999;
  119. Simon HA. Administrative behavior. New York: Macmillan; 1947;
  120. Simon HA. Models of man: social and rational. New York: Wiley; 1957;
  121. Simon HA. Information processing models of cognition. Annu Rev Psychol. 1979;30:363–396
  122. Kahneman D, Tversky A. Subjective probability: a judgment of representativeness. Cogn Psychol. 1972;3:430–454
  123. Kahneman D, Tversky A. On the psychology of prediction. Psychol Rev. 1973;80:237–251
  124. Tversky A, Kahneman D. Judgment under uncertainty: heuristics and biases. Science. 1974;185:1124–1131
  125. Loewenstein G. Out of control: visceral influences on behavior. Organ Behav Hum Decis Process. 1996;65:272–292
  126. Zajonc RB. Emotions. In:  Gilbert DT,  Fiske ST,  Lindzey G editor. The handbook of social psychology, vol. 1. New York: Academic Press; 1998;p. 591–632
  127. Lerner JS, Keltner D. Beyond valence: toward a model of emotion-specific influences on judgement and choice. Cogn Emot. 2000;14:473–493
  128. Bechara A, Damasio H, Tranel D, Damasio AR. Deciding advantageously before knowing the advantageous strategy. Science. 1997;275:1293–1295

PII: S0738-3991(09)00595-3

doi: 10.1016/j.pec.2009.11.017

Patient Education and Counseling
Volume 81, Issue 1 , Pages 53-62 , October 2010