IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v74y2012i10p1536-1543.html
   My bibliography  Save this article

The decision-making process of genetically at-risk couples considering preimplantation genetic diagnosis: Initial findings from a grounded theory study

Author

Listed:
  • Hershberger, Patricia E.
  • Gallo, Agatha M.
  • Kavanaugh, Karen
  • Olshansky, Ellen
  • Schwartz, Alan
  • Tur-Kaspa, Ilan

Abstract

Exponential growth in genomics has led to public and private initiatives worldwide that have dramatically increased the number of procreative couples who are aware of their ability to transmit genetic disorders to their future children. Understanding how couples process the meaning of being genetically at-risk for their procreative life lags far behind the advances in genomic and reproductive sciences. Moreover, society, policy makers, and clinicians are not aware of the experiences and nuances involved when modern couples are faced with using Preimplantation Genetic Diagnosis (PGD). The purpose of this study was to discover the decision-making process of genetically at-risk couples as they decide whether to use PGD to prevent the transmission of known single-gene or sex-linked genetic disorders to their children. A qualitative, grounded theory design guided the study in which 22 couples (44 individual partners) from the USA, who were actively considering PGD, participated. Couples were recruited from June 2009 to May 2010 from the Internet and from a large PGD center and a patient newsletter. In-depth semi-structured interviews were completed with each individual partner within the couple dyad, separate from their respective partner. We discovered that couples move through four phases (Identify, Contemplate, Resolve, Engage) of a complex, dynamic, and iterative decision-making process where multiple, sequential decisions are made. In the Identify phase, couples acknowledge the meaning of their at-risk status. Parenthood and reproductive options are explored in the Contemplate phase, where 41% of couples remained for up to 36 months before moving into the Resolve phase. In Resolve, one of three decisions about PGD use is reached, including: Accepting, Declining, or Oscillating. Actualizing decisions occur in the Engage phase. Awareness of the decision-making process among genetically at-risk couples provides foundational work for understanding critical processes and aids in identifying important gaps for intervention and future research.

Suggested Citation

  • Hershberger, Patricia E. & Gallo, Agatha M. & Kavanaugh, Karen & Olshansky, Ellen & Schwartz, Alan & Tur-Kaspa, Ilan, 2012. "The decision-making process of genetically at-risk couples considering preimplantation genetic diagnosis: Initial findings from a grounded theory study," Social Science & Medicine, Elsevier, vol. 74(10), pages 1536-1543.
    • Handle: RePEc:eee:socmed:v:74:y:2012:i:10:p:1536-1543
    DOI: 10.1016/j.socscimed.2012.02.003
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953612001475
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2012.02.003?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Mick P. Couper & Eleanor Singer & Carrie A. Levin & Floyd J. Fowler Jr. & Angela Fagerlin & Brian J. Zikmund-Fisher, 2010. "Use of the Internet and Ratings of Information Sources for Medical Decisions: Results from the DECISIONS Survey," Medical Decision Making, , vol. 30(5_suppl), pages 106-114, September.
    2. Eric D. Green & Mark S. Guyer, 2011. "Charting a course for genomic medicine from base pairs to bedside," Nature, Nature, vol. 470(7333), pages 204-213, February.
    3. Greil, Arthur L., 1997. "Infertility and psychological distress: A critical review of the literature," Social Science & Medicine, Elsevier, vol. 45(11), pages 1679-1704, December.
    4. Oguzhan Alagoz & Heather Hsu & Andrew J. Schaefer & Mark S. Roberts, 2010. "Markov Decision Processes: A Tool for Sequential Decision Making under Uncertainty," Medical Decision Making, , vol. 30(4), pages 474-483, July.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Eike Nohdurft & Elisa Long & Stefan Spinler, 2017. "Was Angelina Jolie Right? Optimizing Cancer Prevention Strategies Among BRCA Mutation Carriers," Decision Analysis, INFORMS, vol. 14(3), pages 139-169, September.
    2. Hakan Aslan & Burcak Vatansever, 2018. "Efficiency of Knowledge Inflow Structures: The Mediation Effect of Task Environment Analysis," International Journal of Research in Business and Social Science (2147-4478), Center for the Strategic Studies in Business and Finance, vol. 7(4), pages 30-43, October.
    3. Mark H. Ryan & Jonathan Yoder & Sharon K. Flores & Jason Soh & Allison A. Vanderbilt, 2016. "Using Health Information Technology to Reach Patients in Underserved Communities: A Pilot Study to Help Close the Gap With Health Disparities," Global Journal of Health Science, Canadian Center of Science and Education, vol. 8(6), pages 1-86, June.
    4. Malek Ebadi & Raha Akhavan-Tabatabaei, 2021. "Personalized Cotesting Policies for Cervical Cancer Screening: A POMDP Approach," Mathematics, MDPI, vol. 9(6), pages 1-20, March.
    5. Eun Jung Kim & Min Jung Cho, 2021. "The Association between Assisted Reproduction Technology (ART) and Social Perception of Childbearing Deadline Ages: A Cross-Country Examination of Selected EU Countries," IJERPH, MDPI, vol. 18(4), pages 1-17, February.
    6. Johanna Etner & Natacha Raffin & Thomas Seegmuller, 2018. "Male Reproductive Health, Fairness and Optimal Policies," Working Papers halshs-01798983, HAL.
    7. Fabrizio Bernardi & Marco Cozzani, 2021. "Soccer Scores, Short-Term Mood and Fertility," European Journal of Population, Springer;European Association for Population Studies, vol. 37(3), pages 625-641, July.
    8. Angela Fagerlin & Karen R. Sepucha & Mick P. Couper & Carrie A. Levin & Eleanor Singer & Brian J. Zikmund-Fisher, 2010. "Patients’ Knowledge about 9 Common Health Conditions: The DECISIONS Survey," Medical Decision Making, , vol. 30(5_suppl), pages 35-52, September.
    9. Paul Kairys & Thomas Frese & Paul Voigt & Johannes Horn & Matthias Girndt & Rafael Mikolajczyk, 2022. "Development of the simulation-based German albuminuria screening model (S-GASM) for estimating the cost-effectiveness of albuminuria screening in Germany," PLOS ONE, Public Library of Science, vol. 17(1), pages 1-13, January.
    10. Jesse G. Wales & Alexander J. Zolan & William T. Hamilton & Alexandra M. Newman & Michael J. Wagner, 2023. "Combining simulation and optimization to derive operating policies for a concentrating solar power plant," OR Spectrum: Quantitative Approaches in Management, Springer;Gesellschaft für Operations Research e.V., vol. 45(1), pages 119-150, March.
    11. F. R. Rolli & M. Ruggeri & F. Kheiraoui & C. Drago & M. Basile & C. Favaretti & A. Cicchetti, 2018. "Economic evaluation of Zepatier for the management of HCV in the Italian scenario," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 19(9), pages 1365-1374, December.
    12. Greil, Arthur L. & McQuillan, Julia & Lowry, Michele & Shreffler, Karina M., 2011. "Infertility treatment and fertility-specific distress: A longitudinal analysis of a population-based sample of U.S. women," Social Science & Medicine, Elsevier, vol. 73(1), pages 87-94, July.
    13. Johanna Etner & Natacha Raffin & Thomas Seegmuller, 2020. "Reproductive health, fairness, and optimal policies," Journal of Public Economic Theory, Association for Public Economic Theory, vol. 22(5), pages 1213-1244, September.
    14. Carlson, Daniel L., 2011. "Explaining the curvilinear relationship between age at first birth and depression among women," Social Science & Medicine, Elsevier, vol. 72(4), pages 494-503, February.
    15. Maryam Alimohammadi & W. Art Chaovalitwongse & Hubert J. Vesselle & Shengfan Zhang, 2023. "Utilizing Clinical Trial Data to Assess Timing of Surgical Treatment for Emphysema Patients," Medical Decision Making, , vol. 43(1), pages 110-124, January.
    16. Jansen, Natalie Anne & Saint Onge, Jarron M., 2015. "An internet forum analysis of stigma power perceptions among women seeking fertility treatment in the United States," Social Science & Medicine, Elsevier, vol. 147(C), pages 184-189.
    17. Nazila Bazrafshan & M. M. Lotfi, 2020. "A finite-horizon Markov decision process model for cancer chemotherapy treatment planning: an application to sequential treatment decision making in clinical trials," Annals of Operations Research, Springer, vol. 295(1), pages 483-502, December.
    18. Johnson, Katherine M. & Fledderjohann, Jasmine, 2012. "Revisiting “her” infertility: Medicalized embodiment, self-identification and distress," Social Science & Medicine, Elsevier, vol. 75(5), pages 883-891.
    19. Iyn-Hyang Lee & Hye-Young Kang & Hae Sun Suh & Sukhyang Lee & Eun Sil Oh & Hotcherl Jeong, 2018. "Awareness and attitude of the public toward personalized medicine in Korea," PLOS ONE, Public Library of Science, vol. 13(2), pages 1-14, February.
    20. Erin Mathieu, 2010. "The Internet and Medical Decision Making: Can It Replace the Role of Health Care Providers?," Medical Decision Making, , vol. 30(5_suppl), pages 14-16, September.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:74:y:2012:i:10:p:1536-1543. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.