Familial testicular cancer: Interest in genetic testing among high-risk family members

Abstract

Purpose: This study is part of an ongoing National Cancer Institute multidisciplinary, etiologically-focused, crosssectional study of Familial Testicular Cancer (FTC). The current report targets interest in clinical genetic testing for susceptibility to FTC. Methods: Demographics, knowledge, health beliefs, and psychological and social factors were evaluated as covariates related to interest in genetic testing. Results: The majority (66%) of 229 participants (64 affected men, 66 unaffected men, and 99 women) from 47 multiple-case FTC families expressed interest in having a genetic test within 6 months, should such a test become available. Interest was similar among the three subgroups mentioned above. Worries about insurance discrimination based on genetic test results were associated with a significantly lower interest in testing. Alternatively, participants were more likely to be interested in genetic testing if they were younger and had higher levels of family support, a physician's recommendation supporting testing, cancer distress, and a need for information to inform the health care of their children.

A pilot study of knowledge and interest of genetic counseling and testing for hereditary breast and ovarian cancer syndrome among Puerto Rican women

“…(Peters et al 2006;Vadaparampil et al 2007) 5-Point scale ranging from 1 (strongly agree) to 5 (strongly disagree)…”

Familial testicular germ cell tumors in adults: 2010 summary of genetic risk factors and clinical phenotype

“…The NCI CGB Familial Testicular Cancer project is an excellent illustration of this research strategy (Peters et al 2006, 2008, Mai et al 2007, Mueller et al 2007, Cook et al 2008, Korde et al 2008, Giambartolomei et al 2009, Horvath et al 2009, Vadaparampil et al 2009), having yielded both novel, high-impact positive findings and definitive negative results, both of which are helping to shape ongoing and future research efforts into the etiology, clinical phenotype, and management of familial testicular cancer.…”

“…These have included seeking the presence of a dysmorphic clinical phenotype (null), identifying unique clinical constellations suggestive of novel syndromes (Mai et al 2007), quantifying the prevalence of genitourinary anomalies, searching for constitutional cytogenetic abnormalities (see below), evaluating interest in genetic testing (Peters et al 2006) and general genetic knowledge (Peters et al 2008), studying cancer screening behavior related to early detection of testicular (Vadaparampil et al 2009) and other cancers, evaluating patterns of reproductive decision making and issues related to fertility, collecting semen samples for translational research projects, and demonstrating that net endogenous DNA damage levels are higher in FTGCT patients who develop nonseminoma compared with seminoma (Cook et al 2008). The latter finding may partly explain the more aggressive biology and younger age-at-onset of nonseminoma GCTs compared with the relatively less aggressive, later-onset seminomas.…”

Updating and refining a study brochure for a cancer registry-based study of BRCA mutations among young African American breast cancer patients: lessons learned

“…The importance of family with respect to genetic testing is a concept that has been emphasized as important by individuals from the general population, as well as those from the AA community. Previous studies have found that providing information to family members, particularly children, is one of the most important predictors of interest in and/or intention to obtain genetic testing for a variety of hereditary cancers (Kinney et al 2000(Kinney et al , 2001Lerman et al 1995;Peters et al 2006;Ulrich et al 1998;Vadaparampil et al 2007). …”