481
Views
1
CrossRef citations to date
0
Altmetric
Articles

Cross-cultural perspectives on decision making regarding noninvasive prenatal testing: A comparative study of Lebanon and Quebec

, , , , &

References

  • Abou Mrad, F., and L. Tarabey. 2012. Cultural diversity and quality care in Lebanon. Clinical Research and Bioethics 3 (3):1–4.
  • Abu-Musa, A. A., A. H. Nassar, and I. M. Usta. 2008. Attitude of women with IVF and spontaneous pregnancies towards prenatal screening. Human Reproduction 23 (11):2438–43. doi:10.1093/humrep/den291.
  • ACOG Practice Bulletin No. 77: screening for fetal chromosomal abnormalities. 2007. Obstet Gynecol 109 (1):217–27. doi:10.1097/00006250-200701000-00054.
  • Andrews, J. D. 2013. Preface cultural, ethnic and religious reference manual for healthcare providers, vol. 4, ix–xii. United States of America: JAMARDA Resources, Inc.
  • Auger, N., and G. Denis. 2012. Late pregnancy abortions: an analysis of Quebec stillbirth data, 1981–2006. Int J Public Health 57 (2):443–46. doi:10.1007/s00038-011-0313-1.
  • Benn, P., A. R. Chapman, K. Erickson, M. S. Defrancesco, L. Wilkins-Haug, J. F. Egan, and J. Schulkin. 2013. Obstetricians' and gynecologists' practice and opinions of expanded carrier testing and non-invasive prenatal testing. Prenatal Diagnosis 34 (2):145–52. doi:10.1002/pd.4272.
  • Benn, P., H. Cuckle, and E. Pergament. 2013. Non-invasive prenatal testing for aneuploidy: current status and future prospects. Ultrasound Obstet Gynecol 42 (1):15–33. doi:10.1002/uog.12513.
  • Bhogal, A. K., and F. Brunger. 2010. Prenatal genetic counseling in cross-cultural medicine: A framework for family physicians. Canadian Family Physician 56 (10):993–99.
  • Bianchi, D. W., R. L. Parker, J. Wentworth, R. Madankumar, C. Saffer, A. F. Das, and A. J. Sehnert. 2014. DNA sequencing versus standard prenatal aneuploidy screening. N Engl J Med 370 (9):799–808. doi:10.1056/NEJMoa1311037.
  • Chandrasekharan, S., M. A. Minear, A. Hung, and M. Allyse. 2014. Noninvasive prenatal testing goes global. Science Translational Medicine 6 (231):231fs215. doi:10.1126/scitranslmed.3008704.
  • Chattopadhyay, S., and R. De Vries. 2013. Respect for cultural diversity in bioethics is an ethical imperative. Medicine, Healthcare and Philosophy 16 (4):1–10. doi:10.1007/s11019-012-9433-5.
  • Chattopadhyay, S., and A. Simon. 2008. East meets West: cross-cultural perspective in end-of-life decision making from Indian and German viewpoints. Medicine, Health Care and Philosophy 11 (2):165–74. doi:10.1007/s11019-007-9106-y.
  • Chitayat, D., S. Langlois, and R. D. Wilson. 2011. Prenatal screening for fetal aneuploidy in singleton pregnancies. Journal of Obstetrics and Gynaecology Canada 33 (7):736–50. doi:10.1016/S1701-2163(16)34961-1.
  • CHUSJ. 2007. Interruption de grossesse du troisième trimestre pour anomalie foetale Avis du Comité de bioéthique du CHU Sainte-Justine, vol. 2017, p. 1–22. CHU Sainte-Justine. Retrieved from https://www.chusj.org/CORPO/files/7b/7be1483c-c8df-4b49-94af-15cb0de09089.pdf.
  • ClinicalTrials.gov. 1996. Prenatal testing: Amniocentesis versus transabdominal chorionic villus sampling (TA CVS). Retrieved May 2nd, 2016, from https://clinicaltrials.gov/ct2/show/NCT00065897.
  • Cuckle, H., and R. Maymon. 2016. Development of prenatal screening-A historical overview. Semin Perinatol 40 (1):12–22. doi:10.1053/j.semperi.2015.11.003.
  • Davis, D. S. 2013. Opportunistic testing: the death of informed consent? Health Matrix Clevel 23 (1):35–54.
  • Deans, Z., and A. J. Newson. 2012. Ethical considerations for choosing between possible models for using NIPD for aneuploidy detection. J Med Ethics 38 (10):614–18. doi:10.1136/medethics-2011-100180.
  • Devers, P. L., A. Cronister, K. E. Ormond, F. Facio, C. K. Brasington, and P. Flodman. 2013. Noninvasive prenatal testing/noninvasive prenatal diagnosis: the position of the national society of genetic counselors. J Genet Couns 22 (3):291–95. doi:10.1007/s10897-012-9564-0.
  • Dheensa, S., A. Metcalfe, and R. A. Williams. 2013. Men's experiences of antenatal screening: a metasynthesis of the qualitative research. Int J Nurs Stud 50 (1):121–33. doi:10.1016/j.ijnurstu.2012.05.004.
  • Dondorp, W., G. de Wert, Y. Bombard, D. W. Bianchi, C. Bergmann, P. Borry, and M. C. Cornel. 2015. Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Summary and recommendations. European Journal of Human Genetics. 34 (2):145–52. doi:10.1002/pd.4272.
  • Eldahdah, L. T., K. E. Ormond, A. H. Nassar, T. Khalil, and L. F. Zahed. 2007. Outcome of chromosomally abnormal pregnancies in Lebanon: obstetricians' roles during and after prenatal diagnosis. Prenatal Diagnosis 27 (6):525–34. doi:10.1002/pd.1721.
  • Fan, H. C., W. Gu, J. Wang, Y. J. Blumenfeld, Y. Y. El-Sayed, and S. R. Quake. 2012. Erratum: Non-invasive prenatal measurement of the fetal genome. Nature 487 (7407):320–4. doi:10.1038/nature11251.
  • Fathallah, Z. 2012. Travail moral et construction de réseaux autour de l'avortement : santé et sexualité des femmes au Liban (Doctorat), École des Hautes Études en Sciences Sociales (EHESS), Paris.
  • Floyd, E., M. A. Allyse, and M. Michie. 2016. Spanish- and english-speaking pregnant women's views on cfDNA and other prenatal screening: Practical and ethical reflections. J Genet Couns 25 (5):965–77. doi:10.1007/s10897-015-9928-3.
  • Gregg, A. R., B. G. Skotko, J. L. Benkendorf, K. G. Monaghan, K. Bajaj, R. G. Best, and M. S. Watson. 2016. Noninvasive prenatal screening for fetal aneuploidy, 2016 update: a position statement of the American college of medical genetics and genomics. Genetics in Medicine 18 (10):1056–65. doi:10.1038/gim.2016.97.
  • Griffin, B., S. Edwards, L. S. Chitty, and C. Lewis. 2017. Clinical, social and ethical issues associated with non-invasive prenatal testing for aneuploidy. Journal of Psychosomatic Obstetrics & Gynecology 39 (1):11–18. doi:10.1080/0167482X.2017.1286643.
  • Haidar, H., C. Dupras, and V. Ravitsky. 2016. Non-invasive prenatal testing: Review of ethical, legal and social implications. BioéthiqueOnline 5 (6):1–14.
  • Hewison, J. 2015. Psychological aspects of individualized choice and reproductive autonomy in prenatal screening. Bioethics 29 (1), 9–18. doi:10.1111/bioe.12124.
  • HHS. 2011. HHS action plan to reduce racial and ethnic health disparities: A nation free of diparities in health and health care. Washington, DC: US Department of Health and Human Services.
  • Horsting, J. M., S. R. Dlouhy, K. Hanson, K. Quaid, S. Bai, and K. A. Hines. 2014. Genetic counselors' experience with cell-free fetal DNA testing as a prenatal screening option for aneuploidy. J Genet Couns 23 (3):377–400. doi:10.1007/s10897-013-9673-4.
  • Hui, L., and D. W. Bianchi. 2013. Recent advances in the prenatal interrogation of the human fetal genome. Trends in Genetics 29 (2):84–91. doi:10.1016/j.tig.2012.10.013.
  • Jansen, L. A. 2001. Role of the nurse in clinical genetics. In Genetics in the clinic: clinical, ethical and social implications for primary care, eds. M. B. Mahowald, V. McKusick, A. S. Scheuerle & T. J. Aspinwall, 133–41. St Louis, United States.
  • Kelly, S. E., and H. R. Farrimond. 2012. Non-invasive prenatal genetic testing: a study of public attitudes. Public Health Genomics 15 (2):73–81. doi:10.1159/000331254.
  • Kenen, R., A. C. Smith, C. Watkins, and C. Zuber-Pittore. 2000. To use or not to use: Male partners' perspectives on decision making about prenatal diagnosis. Journal of Genetic Counselling 9 (1):33–45. doi:10.1023/A:1009429106757.
  • Kuppermann, M., E. Gates, and A. E. Washington. 1996. Racial-ethnic differences in prenatal diagnostic test use and outcomes: preferences, socioeconomics, or patient knowledge? Obstet Gynecol 87 (5 Pt 1):675–82. doi:10.1016/0029-7844(96)00017-8.
  • Langlois, S., J. A. Brock, R. D. Wilson, F. Audibert, J. A. Brock, J. Carroll, and V. Senikas. 2013. Current status in non-invasive prenatal detection of Down syndrome, trisomy 18, and trisomy 13 using cell-free DNA in maternal plasma. Journal of Obstetrics and Gynaecology Canada 35 (2):177–83. doi:10.1016/S1701-2163(15)31025-2.
  • Lawson, K. L., and R. A. Pierson. 2007. Maternal decisions regarding prenatal diagnosis: rational choices or sensible decisions? Journal of Obstetrics and Gynaecology Canada 29 (3):240–46. doi:10.1016/S1701-2163(16)32412-4.
  • Learman, L. A., M. Kuppermann, E. Gates, R. F. Nease Jr., V. Gildengorin, and A. E. Washington. 2003. Social and familial context of prenatal genetic testing decisions: are there racial/ethnic differences? American Journal of Medical Genetics Part C Semin Med Genet 119C (1):19–26. doi:10.1002/ajmg.c.10004.
  • Lewis, C., C. Silcock, and L. S. Chitty. 2013. Non-invasive prenatal testing for down's syndrome: Pregnant women's views and likely uptake. Public Health Genomics 16 (5):223–32. doi:10.1159/000353523.
  • Lo, Y. M., K. C. Chan, H. Sun, E. Z. Chen, P. Jiang, F. M. Lun, and R. W. Chiu. 2010. Maternal plasma DNA sequencing reveals the genome-wide genetic and mutational profile of the fetus. Science Translational Medicine 2 (61):61ra91. doi:10.1126/scitranslmed.3001720.
  • Lo, Y. M., N. Corbetta, P. F. Chamberlain, V. Rai, I. L. Sargent, C. W. Redman, and J. S. Wainscoat. 1997. Presence of fetal DNA in maternal plasma and serum. Lancet 350 (9076):485–87. doi:10.1016/S0140-6736(97)02174-0.
  • Majumdar, B., G. Browne, J. Roberts, and B. Carpio. 2004. Effects of cultural sensitivity training on health care provider attitudes and patient outcomes. Journal of Nursing Scholarship 36 (2):161–66. doi:10.1111/j.1547-5069.2004.04029.x.
  • Minear, M. A., S. Alessi, M. Allyse, M. Michie, and S. Chandrasekharan. 2015. Noninvasive prenatal genetic testing: Current and emerging ethical, legal, and social issues. Annu Rev Genomics Hum Genet 16:369–98. doi:10.1146/annurev-genom-090314-050000.
  • Minear, M. A., C. Lewis, S. Pradhan, and S. Chandrasekharan. 2015. Global perspectives on clinical adoption of NIPT. Prenatal Diagnosis 35 (10):959–67. doi:10.1002/pd.4637.
  • Morain, S., M. F. Greene, and M. M. Mello. 2013. A new era in noninvasive prenatal testing. New England Journal of Medicine 369 (6):499–501. doi:10.1056/NEJMp1304843.
  • Morris, B. 2014. The impact of culture & ethnicity on the counseling process: perspectives of genetic counselors from minority ethnic groups (Master's thesis), University of South Carolina. Retrieved from http://scholarcommons.sc.edu/etd/2733.
  • Morris, J. K., J. J. Waters, and E. de Souza. 2012. The population impact of screening for Down syndrome: audit of 19 326 invasive diagnostic tests in England and Wales in 2008. Prenatal Diagnosis 32 (6):596–601. doi:10.1002/pd.3866.
  • Mozersky, J., V. Ravitsky, R. Rapp, M. Michie, S. Chandrasekharan, and M. Allyse. 2017. Toward an ethically sensitive implementation of noninvasive prenatal screening in the global context. Hastings Center Report 47 (2):41–49. doi:10.1002/hast.690.
  • Munthe, C. 2015. A new ethical landscape of prenatal testing: individualizing choice to serve autonomy and promote public health: a radical proposal. Bioethics 29 (1):36–45. doi:10.1111/bioe.12126.
  • Nelson, E. 2013a. Reproductive autonomy in theory. In Law, policy and reproductive autonomy, ed. E. Nelson, 11–54. United Kingdom Hart Publishing.
  • Nelson, E. 2013b. Theory to practice: Respecting reproductive autonomy. In Law, policy and reproductive autonomy, ed. E. Nelson, 55–74. United Kingdom: Hart Publishing.
  • Norton, M. E., N. C. Rose, and P. Benn. 2013. Noninvasive prenatal testing for fetal aneuploidy: clinical assessment and a plea for restraint. Obstet Gynecol 121 (4):847–50. doi:10.1097/AOG.0b013e31828642c6.
  • Norton, M. E., and R. J. Wapner. 2015. Cell-free DNA analysis for noninvasive examination of trisomy. New England Journal of Medicine 373 (26):2582.
  • Otaño, L., and L. Igarzábal. 2015. Noninvasive prenatal testing for fetal aneuploidy in Argentina. AJOB Empir Bioeth 6 (1):111–14. doi:10.1080/23294515.2014.993439.
  • Platt, L. D., M. B. Janicki, T. Prosen, J. D. Goldberg, J. Adashek, R. Figueroa, and S. L. Warsof. 2014. Impact of noninvasive prenatal testing in regionally dispersed medical centers in the United States. Am J Obstet Gynecol 211 (4):368 e361–367. doi:10.1016/j.ajog.2014.03.065.
  • Rapp, R. 1999. Testing women, testing the fetus: the social impact of amniocentesis in America. New York, London: Routledge.
  • RCOG, Royal College of Obstetricians and Gynecologists. 2010. Amniocentesis and Chorionic Villus Sampling (pp. 1–13).
  • Rolfes, V., and D. Schmitz. 2015. Unfair discrimination in prenatal aneuploidy screening using cell-free DNA? European Journal of Obstetrics & Gynecology and Reproductive Biology 198:27–29. doi:10.1016/j.ejogrb.2015.12.023.
  • Rothman, B. K. 1994. The tentative pregnancy: amniocentesis and the sexual politics of motherhood. London: Pandora.
  • Sandelowski, M. 2000. Whatever happened to qualitative description? Research in Nursing and Health 23 (4):334–40. doi:10.1002/1098-240X(200008)23:4%3c334::AID-NUR9%3e3.0.CO;2-G.
  • Scott, F. P., M. Menezes, R. Palma-Dias, D. Nisbet, P. Schluter, F. da Silva Costa, and A. C. McLennan. 2017. Factors affecting cell-free DNA fetal fraction and the consequences for test accuracy. Journal of Maternal, Fetal and Neonatal Medicine 31 (14):1865–1872. doi:10.1080/14767058.2017.1330881.
  • Seavilleklein, V. 2009. Challenging the rhetoric of choice in prenatal screening. Bioethics 23 (1):68–77. doi:10.1111/j.1467-8519.2008.00674.x.
  • Shakespeare, T. 1998. Choices and rights: eugenics, genetics and disability equality. Disability and Society 13 (5):665–81. doi:10.1080/09687599826452.
  • Silcock, C., L. M. Liao, M. Hill, and L. S. Chitty. 2015. Will the introduction of non-invasive prenatal testing for Down's syndrome undermine informed choice? Health Expectations 18 (5):1658–71. doi:10.1111/hex.12159.
  • Tischler, R., L. Hudgins, Y. J. Blumenfeld, H. T. Greely, and K. E. Ormond. 2011. Noninvasive prenatal diagnosis: pregnant women's interest and expected uptake. Prenatal Diagnosis 31 (13):1292–99. doi:10.1002/pd.2888.
  • Truong, M., Y. Paradies, and N. Priest. 2014. Interventions to improve cultural competency in healthcare: a systematic review of reviews. BMC Health Services Research 14 (1):99. doi:10.1186/1472-6963-14-99.
  • UNESCO. 2002. Universal declaration on cultural diversity. Paris: UNESCO.
  • van den Oever, J. M., E. K. Bijlsma, I. Feenstra, N. Muntjewerff, I. B. Mathijssen, E. Bakker, and E. M. Boon. 2015. Noninvasive prenatal diagnosis of Huntington disease: detection of the paternally inherited expanded CAG repeat in maternal plasma. Prenatal Diagnosis 35 (10):945–49. doi:10.1002/pd.4593.
  • van Schendel, R. V., A. Kater-Kuipers, E. H. van Vliet-Lachotzki, W. J. Dondorp, M. C. Cornel, and L. Henneman. 2016. What do parents of children with down syndrome think about non-invasive prenatal testing (NIPT)? J Genet Couns 26 (3):522–531. doi:10.1007/s10897-016-0012-4.
  • van Schendel, R. V., J. H. Kleinveld, W. J. Dondorp, E. Pajkrt, D. R. Timmermans, K. C. Holtkamp, and L. Henneman. 2014. Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening. European Journal of Human Genetics 22 (12):1345–50. doi:10.1038/ejhg.2014.32.
  • Vanstone, M., K. Yacoub, M. Giacomini, D. Hulan, and S. McDonald. 2015. Women's experiences of publicly funded non-invasive prenatal testing in Ontario, Canada: Considerations for health technology policy-making. Qual Health Res 25 (8):1069–84. doi:10.1177/1049732315589745.
  • Warsof, S. L., S. Larion, and A. Z. Abuhamad. 2015. Overview of the impact of noninvasive prenatal testing on diagnostic procedures. Prenatal Diagnosis 35 (10):972–79. doi:10.1002/pd.4601.
  • Weil, J. 2001. Multicultural education and genetic counseling. Clin Genet 59 (3):143–49. doi:10.1034/j.1399-0004.2001.590301.x.
  • Williams, R. A., S. Dheensa, and A. Metcalfe. 2011. Men's involvement in antenatal screening: a qualitative pilot study using e-mail. Midwifery 27 (6):861–66. doi:10.1016/j.midw.2010.09.004.
  • Wilson, R. D., S. Langlois, and J. A. Johnson. 2007. Mid-trimester amniocentesis fetal loss rate. Journal of Obstetrics and Gynaecology Canada 29 (7):586–95. doi:10.1016/S1701-2163(16)32501-4.
  • Wong, F. C., and Y. M. Lo. 2015. Prenatal diagnosis innovation: Genome sequencing of maternal plasma. Annu Rev Med 67:419–32. doi:10.1146/annurev-med-091014-115715.
  • Wright, C. F., and H. Burton. 2009. The use of cell-free fetal nucleic acids in maternal blood for non-invasive prenatal diagnosis. Hum Reprod Update 15 (1):139–51. doi:10.1093/humupd/dmn047.
  • Wyszynski, D. F., C. Perandones, and R. D. Bennun. 2003. Attitudes toward prenatal diagnosis, termination of pregnancy, and reproduction by parents of children with nonsyndromic oral clefts in Argentina. Prenatal Diagnosis 23 (9):722–27. doi:10.1002/pd.674.
  • Zhang, H., Y. Gao, F. Jiang, M. Fu, Y. Yuan, Y. Guo, and W. Wang. 2015a. Non-invasive prenatal testing for trisomies 21, 18 and 13: clinical experience from 146,958 pregnancies. Ultrasound in Obstetrics and Gynecology 45 (5):530–38. doi:10.1002/uog.14792.
  • Zhang, H., Y. Gao, F. Jiang, M. Fu, Y. Yuan, Y. Guo, and W. Wang. 2015b. Non-invasive prenatal testing for trisomies 21, 18 and 13: clinical experience from 146,958 pregnancies. Ultrasound in Obstetrics & Gynecology 45 (5):530–38. doi:10.1002/uog.14792.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.