Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk among ethnic minority groups: a systematic review

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Abstract

Background

Genetic testing for risk of hereditary cancer can help patients to make important decisions about prevention or early detection. US and UK studies show that people from ethnic minority groups are less likely to receive genetic testing. It is important to understand various groups’ awareness of genetic testing and its acceptability to avoid further disparities in health care. This review aims to identify and detail awareness, knowledge, perceptions, and attitudes towards genetic counselling/testing for cancer risk prediction in ethnic minority groups.

Methods

A search was carried out in PsycInfo, CINAHL, Embase and MEDLINE. Search terms referred to ethnicity, genetic testing/counselling, cancer, awareness, knowledge, attitudes, and perceptions. Quantitative and qualitative studies, written in English, and published between 2000 and 2015, were included.

Results

Forty-one studies were selected for review: 39 from the US, and two from Australia. Results revealed low awareness and knowledge of genetic counselling/testing for cancer susceptibility amongst ethnic minority groups including African Americans, Asian Americans, and Hispanics. Attitudes towards genetic testing were generally positive; perceived benefits included positive implications for personal health and being able to inform family. However, negative attitudes were also evident, particularly the anticipated emotional impact of test results, and concerns about confidentiality, stigma, and discrimination. Chinese Australian groups were less studied, but of interest was a finding from qualitative research indicating that different views of who close family members are could impact on reported family history of cancer, which could in turn impact a risk assessment.

Conclusion

Interventions are needed to increase awareness and knowledge of genetic testing for cancer risk and to reduce the perceived stigma and taboo surrounding the topic of cancer in ethnic minority groups. More detailed research is needed in countries other than the US and across a broader spectrum of ethnic minority groups to develop effective culturally sensitive approaches for cancer prevention.

Electronic supplementary material

The online version of this article (doi:10.1186/s12889-017-4375-8) contains supplementary material, which is available to authorized users.

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Most cited references 77

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Methods for the thematic synthesis of qualitative research in systematic reviews

James Thomas, Angela Harden (2008)

Background There is a growing recognition of the value of synthesising qualitative research in the evidence base in order to facilitate effective and appropriate health care. In response to this, methods for undertaking these syntheses are currently being developed. Thematic analysis is a method that is often used to analyse data in primary qualitative research. This paper reports on the use of this type of analysis in systematic reviews to bring together and integrate the findings of multiple qualitative studies. Methods We describe thematic synthesis, outline several steps for its conduct and illustrate the process and outcome of this approach using a completed review of health promotion research. Thematic synthesis has three stages: the coding of text 'line-by-line'; the development of 'descriptive themes'; and the generation of 'analytical themes'. While the development of descriptive themes remains 'close' to the primary studies, the analytical themes represent a stage of interpretation whereby the reviewers 'go beyond' the primary studies and generate new interpretive constructs, explanations or hypotheses. The use of computer software can facilitate this method of synthesis; detailed guidance is given on how this can be achieved. Results We used thematic synthesis to combine the studies of children's views and identified key themes to explore in the intervention studies. Most interventions were based in school and often combined learning about health benefits with 'hands-on' experience. The studies of children's views suggested that fruit and vegetables should be treated in different ways, and that messages should not focus on health warnings. Interventions that were in line with these suggestions tended to be more effective. Thematic synthesis enabled us to stay 'close' to the results of the primary studies, synthesising them in a transparent way, and facilitating the explicit production of new concepts and hypotheses. Conclusion We compare thematic synthesis to other methods for the synthesis of qualitative research, discussing issues of context and rigour. Thematic synthesis is presented as a tried and tested method that preserves an explicit and transparent link between conclusions and the text of primary studies; as such it preserves principles that have traditionally been important to systematic reviewing.

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Cancer statistics, 2015.

Rebecca Siegel, Kimberly D Miller, Ahmedin Jemal (2015)

Each year the American Cancer Society estimates the numbers of new cancer cases and deaths that will occur in the United States in the current year and compiles the most recent data on cancer incidence, mortality, and survival. Incidence data were collected by the National Cancer Institute (Surveillance, Epidemiology, and End Results [SEER] Program), the Centers for Disease Control and Prevention (National Program of Cancer Registries), and the North American Association of Central Cancer Registries. Mortality data were collected by the National Center for Health Statistics. A total of 1,658,370 new cancer cases and 589,430 cancer deaths are projected to occur in the United States in 2015. During the most recent 5 years for which there are data (2007-2011), delay-adjusted cancer incidence rates (13 oldest SEER registries) declined by 1.8% per year in men and were stable in women, while cancer death rates nationwide decreased by 1.8% per year in men and by 1.4% per year in women. The overall cancer death rate decreased from 215.1 (per 100,000 population) in 1991 to 168.7 in 2011, a total relative decline of 22%. However, the magnitude of the decline varied by state, and was generally lowest in the South (∼15%) and highest in the Northeast (≥20%). For example, there were declines of 25% to 30% in Maryland, New Jersey, Massachusetts, New York, and Delaware, which collectively averted 29,000 cancer deaths in 2011 as a result of this progress. Further gains can be accelerated by applying existing cancer control knowledge across all segments of the population. © 2015 American Cancer Society.

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Hereditary and familial colon cancer.

Therese Tuohy, Kory W Jasperson, David Burt … (2010)

Between 2% to 5% of all colon cancers arise in the setting of well-defined inherited syndromes, including Lynch syndrome, familial adenomatous polyposis, MUTYH-associated polyposis, and certain hamartomatous polyposis conditions. Each is associated with a high risk of colon cancer. In addition to the syndromes, up to one-third of colon cancers exhibit increased familial risk, likely related to inheritance. A number of less penetrant, but possibly more frequent susceptibility genes have been identified for this level of inheritance. Clarification of predisposing genes allows for accurate risk assessment and more precise screening approaches. This review examines the colon cancer syndromes, their genetics and management, and also the common familial colon cancers with current genetic advances and screening guidelines.

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Author and article information

Contributors

Katie E. J. Hann: k.hann@ucl.ac.uk

Madeleine Freeman: maddie.freeman@ucl.ac.uk

Lindsay Fraser: l.fraser@ucl.ac.uk

Jo Waller: j.waller@ucl.ac.uk

Saskia C. Sanderson: saskia.sanderson@ucl.ac.uk

Belinda Rahman: belinda.rahman@ucl.ac.uk

Lucy Side: lucy.side@gosh.nhs.uk , l.side@ucl.ac.uk

Sue Gessler: s.gessler@uclh.nhs.uk

Anne Lanceley: a.lanceley@ucl.ac.uk

Journal

Journal ID (nlm-ta): BMC Public Health

Journal ID (iso-abbrev): BMC Public Health

Title: BMC Public Health

Publisher: BioMed Central (London )

ISSN (Electronic): 1471-2458

Publication date (Electronic): 25 May 2017

Publication date PMC-release: 25 May 2017

Publication date Collection: 2017

Volume: 17

Electronic Location Identifier: 503

Affiliations

[1 ]ISNI 0000000121901201, GRID grid.83440.3b, Department of Women’s Cancer, , EGA UCL Institute for Women’s Health, University College London, ; London, UK

[2 ]ISNI 0000000121901201, GRID grid.83440.3b, Department of Behavioural Science and Health, , Institute of Epidemiology and Health Care, University College London, ; London, UK

Article

Publisher ID: 4375

DOI: 10.1186/s12889-017-4375-8

PMC ID: 5445407

PubMed ID: 28545429

SO-VID: d0fa7cd5-1004-4ceb-abea-658cde63d535

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 23 August 2016

Date accepted : 7 May 2017

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100000289, Cancer Research UK;

Funded by: The Eve Appeal

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ScienceOpen disciplines: Public health

Keywords: genetic testing,cancer risk,ethnic minorities,awareness,knowledge,attitudes

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ScienceOpen disciplines: Public health

Keywords: genetic testing, cancer risk, ethnic minorities, awareness, knowledge, attitudes

Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk among ethnic minority groups: a systematic review

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UCL: UN SDG 10 Reduced Inequalities

Most cited references 77

Methods for the thematic synthesis of qualitative research in systematic reviews

Cancer statistics, 2015.

Hereditary and familial colon cancer.

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