ArticleEuropean journal of human genetics : EJHG2010
Attitudes toward genetic testing in childhood and reproductive decision-making for familial adenomatous polyposis.
Article in European journal of human genetics : EJHG, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
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Who cites it
17 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Parent-Child Communication and Reproductive Considerations in Families with Genetic Cancer Predisposition Syndromes: A Systematic Review.Journal of adolescent and young adult oncology · 2021Pooled it
- Parents' perceptions of diagnostic genetic testing for children with inherited retinal disease in China.Molecular genetics & genomic medicine · 2019Trial
- Adenomatous Polyposis Coli Gene Polyposis-Related Syndromes.The American journal of gastroenterology · 2026Review
- Mental- and physical health, and general well-being in patients with polyposis syndromes: a scoping review.Familial cancer · 2026Article
- Attitudes toward preimplantation genetic testing and quality of life among individuals with hereditary diffuse gastric cancer syndrome.Hereditary cancer in clinical practice · 2022Article
- Specialist physicians' referral behavior regarding preimplantation genetic testing for single-gene disorders: Is there room to grow?F&S reports · 2021Article
- The Influence of Adolescence on Parents' Perspectives of Testing and Discussing Inherited Cancer Predisposition.Journal of genetic counseling · 2018Article
- Prenatal diagnosis in a hereditary Peutz-Jeghers syndrome family with high cancer risk.BMC medical genetics · 2018Article
- Performing and Declining PGD: Accounts of Jewish Israeli Women Who Carry a BRCA1/2 Mutation or Partners of Male Mutation Carriers.Journal of genetic counseling · 2017Article
- High-risk individuals' perceptions of reproductive genetic testing for CDH1 mutations.Familial cancer · 2017Article
- Reproductive Decision-Making in Women with BRCA1/2 Mutations.Journal of genetic counseling · 2017Article
- Clinical Utility Gene Card for: Familial adenomatous polyposis (FAP) and attenuated FAP (AFAP)--update 2014.European journal of human genetics : EJHG · 2015Article
- Comparison of attitudes regarding preimplantation genetic diagnosis among patients with hereditary cancer syndromes.Familial cancer · 2014Article
- 100 years Lynch syndrome: what have we learned about psychosocial issues?Familial cancer · 2013Review
- Peutz-Jeghers syndrome and family planning: the attitude towards prenatal diagnosis and pre-implantation genetic diagnosis.European journal of human genetics : EJHG · 2012Article
- Attitudes toward childbearing and prenatal testing in individuals undergoing genetic testing for Lynch syndrome.Familial cancer · 2011Article
- CLINICAL MANAGEMENT OF FAMILIES WITH HEREDITARY COLORECTAL CANCER SYNDROMES.Seminars in colon & rectal surgery · 2011Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Childhood DNA testing, prenatal diagnosis (PND) and preimplantation genetic diagnosis (PGD) are available for familial adenomatous polyposis (FAP). However, the use of PND and PGD is controversial. The purpose of this study was to investigate attitudes toward, and experiences with, childhood DNA testing, PND and PGD among members of families at high risk for FAP. In this nationwide, cross-sectional study, questionnaires were sent to individuals from families at high risk for FAP assessing attitudes toward and experiences with childhood testing, PND and PGD, as well as several sociodemographic, clinical and psychosocial variables. Of the individuals from FAP families invited to participate in the study, 525 members participated (response rate=64%). Most parents who had children who were minors (n=93) (82%) were satisfied with the DNA testing procedure. One-third of all individuals wanted DNA testing for their children before age 12. Forty percent of FAP patients indicated that the disease influenced their desire to have children. Only 15% considered termination of pregnancy for FAP acceptable. Approximately 30% of individuals with a FAP diagnosis and their partners considered PND and PGD as acceptable for themselves. A positive attitude was associated with higher levels of guilt and a positive attitude toward termination of pregnancy. Importantly, of those with FAP at childbearing age, 84% had had no previous information at all about either PND or PGD. Future efforts should be aimed at educating FAP family members about reproductive options, allowing them to make an informed choice about family planning. Routine discussion of all reproductive options with a medical specialist should be encouraged.
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