Comparison of attitudes regarding preimplantation genetic diagnosis among patients with hereditary cancer syndromes.
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.
Department of Surgical Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA, tarich@mdanderson.org.
Thereasa A
TA
Rich
Mei
M
Liu
Carol J
CJ
Etzel
Sarah A
SA
Bannon
Maureen E
ME
Mork
Kaylene
K
Ready
Devki S
DS
Saraiya
Elizabeth G
EG
Grubbs
Nancy D
ND
Perrier
Karen H
KH
Lu
Banu K
BK
Arun
Terri L
TL
Woodard
Leslie R
LR
Schover
Jennifer K
JK
Litton
D011125:Adenomatous Polyposis Coli / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D000328:Adult; D000368:Aged; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D005260:Female; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility; D061325:Hereditary Breast and Ovarian Cancer Syndrome / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D018761:Multiple Endocrine Neoplasia Type 1 / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D018813:Multiple Endocrine Neoplasia Type 2a / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D009386:Neoplastic Syndromes, Hereditary / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology; D019836:Preimplantation Diagnosis / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology; D012067:Religion; D012720:Severity of Illness Index; D012737:Sex Factors; D011795:Surveys and Questionnaires