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Familial Cancer

, Volume 13, Issue 2, pp 291–299 | Cite as

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

  • Thereasa A. Rich
  • Mei Liu
  • Carol J. Etzel
  • Sarah A. Bannon
  • Maureen E. Mork
  • Kaylene Ready
  • Devki S. Saraiya
  • Elizabeth G. Grubbs
  • Nancy D. Perrier
  • Karen H. Lu
  • Banu K. Arun
  • Terri L. Woodard
  • Leslie R. Schover
  • Jennifer K. Litton
Original Article

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.

Keywords

Preimplantation genetic diagnosis Hereditary cancer syndromes Hereditary breast and ovarian cancer Lynch syndrome Familial adenomatous polyposis Multiple endocrine neoplasia 

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Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • Thereasa A. Rich
    • 1
    • 2
  • Mei Liu
    • 3
  • Carol J. Etzel
    • 3
  • Sarah A. Bannon
    • 1
    • 2
  • Maureen E. Mork
    • 2
    • 4
  • Kaylene Ready
    • 2
    • 5
  • Devki S. Saraiya
    • 1
    • 2
  • Elizabeth G. Grubbs
    • 1
  • Nancy D. Perrier
    • 1
    • 2
  • Karen H. Lu
    • 2
    • 6
  • Banu K. Arun
    • 2
    • 5
  • Terri L. Woodard
    • 6
  • Leslie R. Schover
    • 7
  • Jennifer K. Litton
    • 2
    • 5
  1. 1.Department of Surgical OncologyThe University of Texas M. D. Anderson Cancer CenterHoustonUSA
  2. 2.Clinical Cancer Genetics ProgramThe University of Texas M. D. Anderson Cancer CenterHoustonUSA
  3. 3.Department of EpidemiologyThe University of Texas M. D. Anderson Cancer CenterHoustonUSA
  4. 4.Department of Gastroenterology, Hepatology, and NutritionThe University of Texas M. D. Anderson Cancer CenterHoustonUSA
  5. 5.Department of Breast Medical OncologyThe University of Texas M. D. Anderson Cancer CenterHoustonUSA
  6. 6.Department of Gynecologic Oncology and Reproductive MedicineThe University of Texas M. D. Anderson Cancer CenterHoustonUSA
  7. 7.Department of Behavioral ScienceThe University of Texas M. D. Anderson Cancer CenterHoustonUSA

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