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Comparison of attitudes regarding preimplantation genetic diagnosis among patients with hereditary cancer syndromes

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Abstract

Preimplantation genetic diagnosis (PGD) allows couples to avoid having a child with an inherited condition, potentially reducing cancer burden in families with a hereditary cancer predisposition. This study investigated and compared awareness and acceptance of PGD among patients with different hereditary cancer syndromes. Questionnaires were mailed to 984 adults with hereditary breast and ovarian cancer, Lynch syndrome, familial adenomatous polyposis, or multiple endocrine neoplasia type 1 or 2. Associations between clinical, demographic, and psychosocial factors and awareness and acceptance of PGD were examined. Of 370 respondents (38 % return rate), 28 % felt their syndrome impacted family planning, 24 % were aware of PGD, 72 % felt that PGD should be offered, 43 % would consider using PGD, and 29 % were uncertain. Family experience and syndrome-specific characteristics, such as disease severity, quality of life and availability of medical interventions as well as gender, family planning stage, and religiosity impact perceptions of the acceptability of PGD, though a high level of uncertainty exists. Hereditary cancer patients lack awareness of PGD despite feeling that PGD should be offered, highlighting the need for education on this topic. While we found attitudes about the acceptability of PGD to be generally similar to those reported in the literature and of genetics and ethics experts, we observed similarities and differences between syndromes that provide insight into why some hereditary cancer patients may find PGD more acceptable than others.

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Authors and Affiliations

  1. Department of Surgical Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA

    Thereasa A. Rich, Sarah A. Bannon, Devki S. Saraiya, Elizabeth G. Grubbs & Nancy D. Perrier

  2. Clinical Cancer Genetics Program, The University of Texas M. D. Anderson Cancer Center, 1400 Hermann Pressler Dr, Unit 444, Houston, TX, 77230, USA

    Thereasa A. Rich, Sarah A. Bannon, Maureen E. Mork, Kaylene Ready, Devki S. Saraiya, Nancy D. Perrier, Karen H. Lu, Banu K. Arun & Jennifer K. Litton

  3. Department of Epidemiology, The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA

    Mei Liu & Carol J. Etzel

  4. Department of Gastroenterology, Hepatology, and Nutrition, The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA

    Maureen E. Mork

  5. Department of Breast Medical Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA

    Kaylene Ready, Banu K. Arun & Jennifer K. Litton

  6. Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA

    Karen H. Lu & Terri L. Woodard

  7. Department of Behavioral Science, The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA

    Leslie R. Schover

Authors
  1. Thereasa A. Rich
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  2. Mei Liu
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  3. Carol J. Etzel
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  4. Sarah A. Bannon
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  6. Kaylene Ready
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  8. Elizabeth G. Grubbs
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  9. Nancy D. Perrier
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  10. Karen H. Lu
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  11. Banu K. Arun
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  13. Leslie R. Schover
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  14. Jennifer K. Litton
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Correspondence to Thereasa A. Rich.

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Rich, T.A., Liu, M., Etzel, C.J. et al. Comparison of attitudes regarding preimplantation genetic diagnosis among patients with hereditary cancer syndromes. Familial Cancer 13, 291–299 (2014). https://doi.org/10.1007/s10689-013-9685-0

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  • DOI: https://doi.org/10.1007/s10689-013-9685-0

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