welcome to oneFAPvoice
- a positively charged Familial Adenomatous Polyposis community.- join today!
- login
Attitudes Toward Genetic Testing in Childhood and Reproductive Decision-Making for Familial Adenomatous Polyposis
source: European journal of human genetics
year: 2010
authors: Kirsten F. L. Douma, Neil K. Aaronson, Hans F. A. Vasen, Senno Verhoef, Eveline M. A. Bleiker, Chad M. Gundy
summary/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.
organization: The Netherlands Cancer InstituteDOI: 10.1038/ejhg.2009.151
read more full text source
expertly curated content related to this topic
-
Sliced Up and Grabbing a Slice of Summer: A Look at My Scarhttps://www.youtube.com/watch?v=km-rOpCd...
-
Pouch Adenomas in Familial Adenomatous Polyposis After Restorative ProctocolectomyINTRODUCTION : Australian Clinical Pract...
-
Endoscopic Management of Familial Adenomatous Polyposis in Patients Refusing ColectomyBACKGROUND AND STUDY AIMS : Colectomy pr...
-
joanna’s storyJoanna’s diagnosis of attenuated Famil...
-
Considerations and Complications in Patients Undergoing Ileal Pouch Anal AnastomosisTotal proctocolectomy with ileal pouch a...
-
Prevalence and Risk Factors for Adenomas in the Ileal Pouch and the Afferent Loop After Restorative Proctocolectomy ...BACKGROUND : Restorative proctocolectomy...