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A Qualitative Inquiry of the Financial Concerns of Couples Opting to Use Preimplantation Genetic Diagnosis to Prevent the Transmission of Known Genetic Disorders

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Journal of Genetic Counseling

Abstract

Preimplantation genetic diagnosis (PGD) is an innovative prenatal testing option because the determination of whether a genetic disorder or chromosomal abnormality is evident occurs prior to pregnancy. However, PGD is not covered financially under the majority of private and public health insurance institutions in the United States, leaving couples to decide whether PGD is financially feasible. The aim of this qualitative study was to understand the role of finances in the decision-making process among couples who were actively considering PGD. In-depth, semi-structured interviews were completed with 18 genetic high-risk couples (36 individual partners). Grounded theory guided the analysis, whereby three themes emerged: 1) Cost is salient, 2) Emotions surrounding affordability, and 3) Financial burden and sacrifice. Ultimately, couples determined that the opportunity to avoid passing on a genetic disorder to a future child was paramount to the cost of PGD, but expressed financial concerns and recognized financial access as a major barrier to PGD utilization.

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Acknowledgments

We graciously thank the couples who participated in the study. The research was completed in partial fulfillment of the Master of Public Health requirements for graduation at the University of Illinois at Chicago for Ms. Drazba. Support for the research was award to Dr. Hershberger by the National Institutes of Health (NIH), National Institute of Child Health and Human Development and the Office of Research on Women’s Health (K12 HD055892), National Institute of Nursing Research (R03 NR010351), and the University of Illinois at Chicago College of Nursing Dean’s Fund. The content of this article is the authors’ responsibility and does not necessarily represent the official views of the NIH, the University of Illinois at Chicago, or Pennington Biomedical Research Center.

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Authors and Affiliations

  1. Population Science, Pennington Biomedical Research Center, 6400 Perkins Road, Baton Rouge, LA, 70808, USA

    Kathryn T. Drazba

  2. School of Public Health, University of Illinois at Chicago, Chicago, IL, USA

    Michele A. Kelley

  3. College of Nursing & College of Medicine, University of Illinois at Chicago, Chicago, IL, USA

    Patricia E. Hershberger

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  1. Kathryn T. Drazba
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  2. Michele A. Kelley
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  3. Patricia E. Hershberger
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Correspondence to Kathryn T. Drazba.

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Drazba, K.T., Kelley, M.A. & Hershberger, P.E. A Qualitative Inquiry of the Financial Concerns of Couples Opting to Use Preimplantation Genetic Diagnosis to Prevent the Transmission of Known Genetic Disorders. J Genet Counsel 23, 202–211 (2014). https://doi.org/10.1007/s10897-013-9638-7

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  • DOI: https://doi.org/10.1007/s10897-013-9638-7

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