[go: up one dir, main page]
More Web Proxy on the site http://driver.im/ Skip to main content

Advertisement

Springer Nature Link
Log in

The decision-making process, experience, and perceptions of preimplantation genetic testing (PGT) users

  • Assisted Reproduction Technologies
  • Published:
Journal of Assisted Reproduction and Genetics Aims and scope Submit manuscript

Abstract

Purpose

The decision to undergo preimplantation genetic testing (PGT) entails a variety of personal and societal variables. Although PGT technology is widely accepted and used, few studies have queried the motives and concerns of PGT users; moreover, in-depth qualitative data regarding the PGT experience is scant.

Methods

In order to explore and analyze the experience, concerns, expectations, and attitudes toward the PGT technique and its implications, semi-structured interviews were conducted in a single tertiary medical center with 43 Israeli PGT users for HLA matching and autosomal dominant, autosomal recessive, and X-linked genetic disorders.

Results

The primary considerations in choosing PGT were prevention of birth of a child who would suffer a terminal or chronic disease as well as abrogation of a familial genetic condition. Religion played a decisive role in accepting PGT as an antenatal option. Regarding satisfaction with the PGT experience, many interviewees highlighted the need for greater attention to be given to potential stages of failure throughout the procedure and the need for emotional support.

Our clinical results regarding implantation rate and cumulative live birth rate are 38–40% and 27–30%, respectively.

Conclusion

This survey broadens understanding of the specialized needs of women, couples, and minority groups undergoing PGT and underscores the relevance of counseling services for PGT users.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
£29.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price includes VAT (United Kingdom)

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Handyside AH, Kontogianni EH, Hardy K, Winston RML. Pregnancies from biopsied human preimplantation embryos sexed by Y-specific DNA amplification. Nature. 1990;344(6268):768–70.

    CAS  PubMed  Google Scholar 

  2. Grazi RV, Wolowelsky JB. Cultural concerns when counseling orthodox Jewish couples for genetic screening and PGD. J Genet Couns. 2015;24(6):878–81.

    PubMed  Google Scholar 

  3. Chamsi-Pasha H, Albar MA. Assisted reproductive technology: Islamic Sunni perspective. Hum Fertil (Camb). 2015;18(2):107–12.

    Google Scholar 

  4. Dreesen J, Destouni A, Kourlaba G, Degn B, Mette WC, Carvalho F, et al. Evaluation of PCR-based preimplantation genetic diagnosis applied to monogenic diseases: a collaborative ESHRE PGD consortium study. Eur J Hum Genet. 2014;22(8):1012–8.

    CAS  PubMed  Google Scholar 

  5. Jiang Z, Wang Y, Lin J, Xu J, Ding G, Huang H. Genetic and epigenetic risks of assisted reproduction. Best Pract Res Clin Obstet Gynaecol. 2017;44:90–104.

    PubMed  Google Scholar 

  6. Harper J, Geraedts J, Borry P, Cornel MC, Dondorp WJ, Gianaroli L, et al. Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. Hum Reprod. 2014;29(8):1603–9.

    PubMed  Google Scholar 

  7. Zegers-Hochschild F, Adamson GD, Dyer S, Racowsky C, de Mouzon J, Sokol R, et al. The international glossary on infertility and fertility care, 2017. Hum Reprod. 2017;32(9):1786–801.

    PubMed  PubMed Central  Google Scholar 

  8. Hershberger PE, Pierce PF. Conceptualizing couples’ decision making in PGD: emerging cognitive, emotional, and moral dimensions. Patient Educ Couns. 2010;81(1):53–62.

    PubMed  PubMed Central  Google Scholar 

  9. Karatas JC, Strong KA, Barlow-Stewart K, McMahon C, Meiser B, Roberts C. Psychological impact of preimplantation genetic diagnosis: a review of the literature. Reprod BioMed Online. 2010;20(1):83–91.

    CAS  PubMed  Google Scholar 

  10. Cunningham J, Goldsmith L, Skirton H. The evidence base regarding the experiences of and attitudes to preimplantation genetic diagnosis in prospective parents. Midwifery. 2015;31(2):288–96.

    PubMed  Google Scholar 

  11. Genoff Garzon MC, Rubin LR, Lobel M, Stelling J, Pastore LM. Review of patient decision-making factors and attitudes regarding preimplantation genetic diagnosis. Clin Genet. 2018;94(1):22–42.

    CAS  PubMed  Google Scholar 

  12. Winkelman WD, Missmer SA, Myers D, Ginsburg ES. Public perspectives on the use of preimplantation genetic diagnosis. J Assist Reprod Genet. 2015;32(5):665–75.

    PubMed  PubMed Central  Google Scholar 

  13. Olesen AP, Nor SN, Amin L. Attitudes toward pre-implantation genetic diagnosis (PGD) for genetic disorders among potential users in Malaysia. Sci Eng Ethics. 2016;22(1):133–46.

    PubMed  Google Scholar 

  14. Zierhut H, MacMillan ML, Wagner JE, Bartels DM. More than 10 years after the first ‘savior siblings’: parental experiences surrounding preimplantation genetic diagnosis. J Genet Couns. 2013;22(5):594–602.

    PubMed  Google Scholar 

  15. Chan JL, Johnson LNC, Sammel MD, DiGiovanni L, Voong C, Domchek SM, et al. Reproductive decision-making in women with BRCA1/2 mutations. J Genet Couns. 2017;26(3):594–603.

    PubMed  Google Scholar 

  16. Hallowell N, Badger S, Richardson S, Caldas C, Hardwick RH, Fitzgerald RC, et al. High-risk individuals’ perceptions of reproductive genetic testing for CDH1 mutations. Familial Cancer. 2017;16(4):531–5.

    PubMed  PubMed Central  Google Scholar 

  17. 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(12):1117–22.

    PubMed  Google Scholar 

  18. Lavery SA, et al. Preimplantation genetic diagnosis: patients’ experiences and attitudes. Hum Reprod. 2002;17(9):2464–7.

    CAS  PubMed  Google Scholar 

  19. Roberts C, Franklin S. Experiencing new forms of genetic choice: findings from an ethnographic study of preimplantation genetic diagnosis. Hum Fertil (Camb). 2004;7(4):285–93.

    Google Scholar 

  20. Kalfoglou AL, Scott J, Hudson K. PGD patients’ and providers’ attitudes to the use and regulation of preimplantation genetic diagnosis. Reprod BioMed Online. 2005;11(4):486–96.

    PubMed  Google Scholar 

  21. Dagan E, Birenbaum-Carmeli D, Friedman E, Feldman B. Performing and declining PGD: accounts of Jewish Israeli women who carry a BRCA1/2 mutation or partners of male mutation carriers. J Genet Couns. 2017;26(5):1070–9.

    PubMed  Google Scholar 

  22. Haude K, McCarthy Veach P, LeRoy B, Zierhut H. Factors influencing the decision-making process and long-term interpersonal outcomes for parents who undergo preimplantation genetic diagnosis for Fanconi anemia: a qualitative investigation. J Genet Couns. 2017;26(3):640–55.

    CAS  PubMed  Google Scholar 

  23. Klitzman R. Challenges, dilemmas and factors involved in PGD decision-making: providers’ and patients’ views. Experiences and Decisions J Genet Couns. 2018;27(4):909–19.

  24. https://www.health.gov.il/Subjects/Med_Inst/IVF/Pages/IVF-list.aspx. Israeli Ministry of Health 2020.

  25. http://call.health.gov.il/infocenter/index?page=content&id=EL7162. Israeli Ministry of Health. 2019.

  26. Zlotogora J, Patrinos GP. The Israeli National Genetic database: a 10-year experience. Hum Genomics. 2017;11(1):5.

    PubMed  PubMed Central  Google Scholar 

  27. Zlotogora J, Grotto I, Kaliner E, Gamzu R. The Israeli national population program of genetic carrier screening for reproductive purposes. Genet Med. 2016;18(2):203–6.

    PubMed  Google Scholar 

  28. Shalev, C. and S. Gooldin, The uses and misuses of in vitro fertilization in Israel: some sociological and ethical considerations. Nashim: A Journal of Jewish Women's Studies & Gender Issues, 2006: p. 151–176.

  29. Birenbaum-Carmeli D. Thirty-five years of assisted reproductive technologies in Israel. Reprod Biomed Soc Online. 2016;2:16–23.

    PubMed  PubMed Central  Google Scholar 

  30. Bakst S, Romano-Zelekha O, Ostrovsky J, Shohat T. Determinants associated with making prenatal screening decisions in a national study. J Obstet Gynaecol. 2019;39(1):41–8.

    PubMed  Google Scholar 

  31. David BE, Weitzman GA, Hervé C, Fellous M. Genetic counseling for the orthodox Jewish couple undergoing preimplantation genetic diagnosis. J Genet Couns. 2012;21(5):625–30.

    CAS  PubMed  Google Scholar 

  32. Serour GI. Islamic perspectives in human reproduction. Reprod BioMed Online. 2008;17(Suppl 3):34–8.

    PubMed  Google Scholar 

  33. Salemink S, Dekker N, Kets CM, van der Looij E, van Zelst-Stams WAG, Hoogerbrugge N. Focusing on patient needs and preferences may improve genetic counseling for colorectal cancer. J Genet Couns. 2013;22(1):118–24.

    PubMed  Google Scholar 

  34. Tercyak KP, Johnson SB, Roberts SF, Cruz AC. Psychological response to prenatal genetic counseling and amniocentesis. Patient Educ Couns. 2001;43(1):73–84.

    CAS  PubMed  Google Scholar 

  35. Lewis, C., H. Skirton, and R. Jones, Reproductive empowerment: the main motivator and outcome of carrier testing. J Health Psychol, 2011: p. 1359105311417193.

  36. Teddlie C, Yu F. Mixed methods sampling a typology with examples. J Mixed Methods Res. 2007;1(1):77–100.

    Google Scholar 

  37. Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis (introducing qualitative methods series). London: SAGE Publications; 2006.

    Google Scholar 

  38. Shkedi A. Words of meaning: qualitative research-theory and practice (Hebrew). Tel-Aviv: Tel-Aviv university Ramot; 2003.

    Google Scholar 

  39. Zuckerman S, Zeevi DA, Gooldin S, Altarescu G. Acceptable applications of preimplantation genetic diagnosis (PGD) among Israeli PGD users. Eur J Hum Genet. 2017;25(10):1113–7.

    CAS  PubMed  PubMed Central  Google Scholar 

  40. Benagiano G, Carrara S, Filippi V. Robert G Edwards and the Roman Catholic Church. Reprod BioMed Online. 2011;22(7):665–72.

    PubMed  Google Scholar 

  41. Derks-Smeets IA, et al. Decision-making on preimplantation genetic diagnosis and prenatal diagnosis: a challenge for couples with hereditary breast and ovarian cancer. Hum Reprod. 2014;29(5):1103–12.

    CAS  PubMed  Google Scholar 

  42. Hashiloni-Dolev Y. Between mothers, fetuses and society: reproductive genetics in the Israeli-Jewish context. Nashim: A Journal of Jewish Women's Studies & Gender Issues. 2006;12(1):129–50.

    Google Scholar 

  43. Gooldin S. ‘Emotional rights’, moral reasoning, and Jewish-Arab alliances in the regulation of in-vitro-fertilization in Israel: theorizing the unexpected consequences of assisted reproductive technologies. Soc Sci Med. 2013;83:90–8.

    PubMed  Google Scholar 

  44. Remennick L. The quest for the perfect baby: why do Israeli women seek prenatal genetic testing? Sociology of health & illness. 2006;28(1):21–53.

    Google Scholar 

  45. Harper J, et al. The ESHRE PGD consortium: 10 years of data collection. Hum Reprod Update. 2012;18(3):234–47.

    CAS  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Shaare Zedek Medical Center- Medical Genetics Institute, Jerusalem, Israel

    Shachar Zuckerman & Gheona Altarescu

  2. Hadassah Medical School, Hebrew University , Jerusalem, Israel

    Shachar Zuckerman & Gheona Altarescu

  3. Department of Sociology and Anthropology, Hebrew University, Jerusalem, Israel

    Sigal Gooldin

  4. Shaare Zedek Medical Center- Preimplantation Genetic Unit, Jerusalem, Israel

    David A. Zeevi & Gheona Altarescu

Authors
  1. Shachar Zuckerman
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Sigal Gooldin
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. David A. Zeevi
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Gheona Altarescu
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Shachar Zuckerman.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Zuckerman, S., Gooldin, S., Zeevi, D.A. et al. The decision-making process, experience, and perceptions of preimplantation genetic testing (PGT) users. J Assist Reprod Genet 37, 1903–1912 (2020). https://doi.org/10.1007/s10815-020-01840-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10815-020-01840-4

Keywords

Search

Navigation