Genetic Testing in Diverse Populations

Huo, Dezheng; Olopade, Olufunmilayo I.

doi:10.1001/jama.298.24.2910

Cited by 18 publications

(3 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Asian race, in particular, was associated with decreases in both of these outcomes in multivariate models. Several prior studies have reported lower uptake of screening mammography (23) and BRCA genetic testing(24) in Asians, as well as potential cultural beliefs that could affect breast cancer screening and genetic testing in Asians (25, 26). Until further studies replicate our findings, however, we recommend interpreting our data regarding race with caution.…”

Section: Discussionmentioning

confidence: 99%

Communication of BRCA Results and Family Testing in 1,103 High-Risk Women

Cheung

Olson

et al. 2010

Cancer Epidemiology, Biomarkers &Amp; Prevention

View full text Add to dashboard Cite

Background Genetic testing for hereditary cancer risk has implications for individuals and families. This study of women at risk of hereditary breast and ovarian cancer (HBOC) examines communication of BRCA results and subsequent genetic testing in the family. Methods We surveyed 1103 female BRCA testers at two hospitals, querying for communication of results and testing in relatives. Results 97% of participants communicated BRCA results with at least one relative. Communication was negatively associated with older age (OR=0.66 per decade, 95% CI=0.4–0.9), Asian race (OR=0.18, 95% CI=0.06–0.5), and testing at the public hospital vs. the cancer center (OR=0.19, 95% CI=0.07–0.5). Communication was positively associated with increased knowledge of HBOC screening and risk reduction recommendations (OR=1.9, 95% CI=1.1–3.4) and increased satisfaction with the decision to BRCA test (SWD) (OR=2.6, 95% CI=1.6–4.0). 75% of BRCA-positive participants reported at least one relative pursued genetic testing. Family testing was negatively associated with Asian race (OR=0.15, 95%CI=0.02–0.8), and positively associated with increased socioeconomic status (OR=1.4, 95%CI=1.1–1.7) and increased SWD (OR=2.1, 95% CI=1.1–4.1). Conclusion Despite high overall rates of communicating BRCA results, underserved and some minority women appear less likely to inform relatives of their BRCA status or have relatives test for a known family mutation. Satisfaction with the decision to BRCA test is positively associated with both outcomes. Impact This study identified several novel predictors of family communication and family genetic testing in a large population of high-risk women. This work can inform clinicians interested in improving family communication regarding cancer predisposition testing.

show abstract

Section: Discussionmentioning

confidence: 99%

Communication of BRCA Results and Family Testing in 1,103 High-Risk Women

Cheung

Olson

et al. 2010

Cancer Epidemiology, Biomarkers &Amp; Prevention

View full text Add to dashboard Cite

show abstract

“…It was also explained that OC risk information from genetic testing could be less accurate for women of SA ethnicity as most research has been carried out with women of European descent. 22 The presentation text was designed to be understood by participants irrespective of educational attainment and was pilot tested with SA women for comprehension.…”

Section: Methodsmentioning

confidence: 99%

Attitudes towards a programme of risk assessment and stratified management for ovarian cancer: a focus group study of UK South Asians’ perspectives

et al. 2018

View full text Add to dashboard Cite

ObjectivePopulation-based risk assessment, using genetic testing and the provision of appropriate risk management, could lead to prevention, early detection and improved clinical management of ovarian cancer (OC). Previous research with mostly white British participants found positive attitudes towards such a programme. The current study aimed to explore the attitudes of South Asian (SA) women and men in the UK with the aim of identifying how best to implement such a programme to minimise distress and maximise uptake.DesignSemistructured qualitative focus group discussions.SettingCommunity centres across North London and Luton.Participants49 women and 13 men who identified as SA (Indian, Pakistani or Bangladeshi), which constitutes the largest non-European ethnic minority group in the UK.MethodsSeven community-based focus groups were held. Group discussions were transcribed verbatim, coded and analysed thematically.ResultsAwareness and knowledge of OC symptoms and specific risk factors was low. The programme was acceptable to most participants and attitudes to it were generally positive. Participants’ main concerns related to receiving a high-risk result following the genetic test. Younger women may be more cautious of genetic testing, screening or risk-reducing surgery due to the importance of marriage and childbearing in their SA cultures.ConclusionsA crucial first step to enable implementation of population-based genetic risk assessment and management in OC is to raise awareness of OC within SA communities. It will be important to engage with the SA community early on in programme implementation to address their specific concerns and to ensure culturally tailored decision support.

show abstract

“…The Cancer Control Supplement of the 2000 National Health Interview Survey found that of 32,000 adults, 42% reported having heard of genetic testing for cancer risk, but only 13.8% of foreign-born adults and only 29.3% of adults with high school education or less knew about genetic testing for cancer risk (Schaefer and Dunston 2006). To address these apparent disparities, a recent editorial in the Journal of the American Medical Association recommends that interventions be designed to improve the uptake of genetic testing in underserved populations in order to fulfill its potential as a tool for effective cancer control and prevention (Huo and Olopade 2007). …”

Section: Introductionmentioning

confidence: 99%

Pre‐counseling Education for Low Literacy Women at Risk of Hereditary Breast and Ovarian Cancer (HBOC): Patient Experiences Using the Cancer Risk Education Intervention Tool (CREdIT)

Joseph

Beattie

Lee

et al. 2010

Journal of Genetic Counseling

View full text Add to dashboard Cite

The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate participants’ experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic counseling and testing for breast/ovarian cancer was a new concept; (2) CREdIT’s story format was particularly appealing; (3) changes in participants’ perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session counselor questionnaire, counselors’ rating of the patient’s preparedness before the session was significantly higher for patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT to specific populations reflect important areas for future work.

show abstract

Genetic Testing in Diverse Populations

Cited by 18 publications

References 30 publications

Communication of BRCA Results and Family Testing in 1,103 High-Risk Women

Communication of BRCA Results and Family Testing in 1,103 High-Risk Women

Attitudes towards a programme of risk assessment and stratified management for ovarian cancer: a focus group study of UK South Asians’ perspectives

Pre‐counseling Education for Low Literacy Women at Risk of Hereditary Breast and Ovarian Cancer (HBOC): Patient Experiences Using the Cancer Risk Education Intervention Tool (CREdIT)

Contact Info

Product

Resources

About