RESEARCH ARTICLE Open Access

Awareness, knowledge, perceptions, andattitudes towards genetic testing for cancerrisk among ethnic minority groups: asystematic reviewKatie E. J. Hann1, Madeleine Freeman2, Lindsay Fraser1, Jo Waller2, Saskia C. Sanderson2, Belinda Rahman1,Lucy Side1, Sue Gessler and Anne Lanceley1* for the PROMISE study team

Abstract

Background: Genetic testing for risk of hereditary cancer can help patients to make important decisions aboutprevention or early detection. US and UK studies show that people from ethnic minority groups are less likely toreceive genetic testing. It is important to understand various groups’ awareness of genetic testing and its acceptability toavoid further disparities in health care. This review aims to identify and detail awareness, knowledge, perceptions, andattitudes 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, genetictesting/counselling, cancer, awareness, knowledge, attitudes, and perceptions. Quantitative and qualitative studies, writtenin 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 lowawareness and knowledge of genetic counselling/testing for cancer susceptibility amongst ethnic minority groupsincluding 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, negativeattitudes were also evident, particularly the anticipated emotional impact of test results, and concerns aboutconfidentiality, stigma, and discrimination. Chinese Australian groups were less studied, but of interest was afinding from qualitative research indicating that different views of who close family members are could impact onreported 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 toreduce the perceived stigma and taboo surrounding the topic of cancer in ethnic minority groups. More detailedresearch is needed in countries other than the US and across a broader spectrum of ethnic minority groupsto develop effective culturally sensitive approaches for cancer prevention.

Keywords: Genetic testing, Cancer risk, Ethnic minorities, Awareness, Knowledge, Attitudes

* Correspondence: a.lanceley@ucl.ac.uk1Department of Women’s Cancer, EGA UCL Institute for Women’s Health,University College London, London, UKFull list of author information is available at the end of the article

© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe 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.

Hann et al. BMC Public Health (2017) 17:503 DOI 10.1186/s12889-017-4375-8

BackgroundSeveral types of cancer have been found to be associatedwith hereditary gene mutations [1, 2]. Specifically, muta-tions in the BRCA1 and BRCA2 genes are known to belinked to breast, ovarian [3, 4], and prostate cancer [5].Over the past 20 years, the scientific understanding ofcancer related genetics has greatly improved. Withinseveral European countries and the US, patients diag-nosed with a potentially hereditary cancer or with astrong family history can receive genetic counselling andtesting to establish whether they have an inherited can-cer gene mutation. Knowledge about personal cancerrisk can help currently healthy individuals to makehealth care decisions, such as whether to attend regularscreening or opt for surgery, in order to help reduce therisk of developing cancer [6].Public attitudes towards genetic testing for the risk of

diseases, including cancer, have been found to be gener-ally positive [7–9]. In a US study, 97% of participants in-dicated that they were at least somewhat interested inthe topic of genetic testing and the majority had positiveattitudes about genetic research and approved of the useof genetic testing in the detection of diseases [9].Positive attitudes towards genetic testing are also re-ported in a Dutch survey study that found that 64%of participants believed genetic testing would helppeople to live longer [8]. However, there are also con-cerns amongst the general public that genetic test re-sults could be used to discriminate against those witha genetic predisposition for illness [9] and that gen-etic testing could result in people being labelled ashaving “good” or “bad” genes [8].The incidence and burden of cancer varies between

ethnic groups. In the UK, incidence of breast cancer ishigher amongst White women compared to all otherethnic groups [10], but Black men have higher rates ofprostate cancer than White men [11]. Similarly, in theUS overall cancer incidence and mortality has beenfound to be highest in Black men compared to otherethnic groups, and whilst Black women have a lower in-cidence of breast cancer than White women they have aworse mortality rate [12]. In the US Hispanics are re-ported to have lower incidence and mortality rates ofcancer than White Americans [13], and evidence sug-gests that whilst Asian Americans also tend to havelower cancer rates than Whites, increasing incidencerates have been detected between 1990 and 2008 forbreast, colorectal, and uterine cancer amongst severalsubgroups of Asian American women [14].Despite the potential health benefits of cancer suscep-

tibility testing, ethnic minority groups have been foundto be underserved by genetic services and underrepre-sented in research in Europe and the US [15–18]. In aUK study, only 3% of patients referred to 22 regional

genetics services were from an ethnic minority group[19]. Armstrong et al. [20] also found that womenpursuing BRCA1/2 genetic testing in a US study weresignificantly more likely to be White, and Levy et al. [21]report that significantly fewer Black and Hispanicwomen with a new diagnosis of breast cancer and at riskof carrying a BRCA gene mutation had genetic testing.A previously published review investigating what may

hinder African, White Irish, and South Asian ethnic mi-nority groups’ access to cancer genetic services foundpotential barriers included low awareness and knowledgeof genetic testing and available services, language bar-riers, stigma associated with being at risk, fatalistic viewsof cancer, anticipation of negative emotions, uncertaintyabout the information provided, and mistrust of howdata would be used [22]. The current review aims to in-vestigate factors that might act as barriers or facilitatorsto the uptake of genetic testing across diverse ethnic mi-nority groups. The review fills a critical knowledge gapby focusing on awareness, knowledge, perceptions, andattitudes towards genetic testing for cancer susceptibil-ity, and reasoning for and against testing by people fromBlack and ethnic minority backgrounds.

MethodsThe systematic review followed PRISMA guidelines andan a priori published protocol (https://www.crd.york.ac.uk/PROSPERO/ CRD42016033485).

EligibilityThe review includes primary studies that aimed specificallyto investigate ethnic minority groups’ awareness, know-ledge, perceptions, and attitudes, or provide informationon participants’ reasons for/against interest, intentions oractual uptake of genetic testing/counselling for personalcancer risk. Studies with a focus on genetic testing or gen-etic counselling were included as currently these servicesoften go hand-in-hand and we wanted to see if there wereimportant attitudes affecting uptake. We included quanti-tative and qualitative studies conducted in Europe, the USor Australia, and published in English in a peer reviewedjournal from the year 2000 onwards.Research that investigated awareness/attitudes/percep-

tions of direct-to-consumer genetic testing, or that onlyinvestigated participants’ perceptions of cancer or theirexperience of receiving genetic information were excludedfrom the review. Articles that evaluated recruitmentmethods, or interventions to raise awareness/knowledgeof genetic testing amongst ethnic minority groups werealso excluded. Studies focusing mainly on AshkenaziJewish participants were not included as this group isknown to have an increased risk of carrying BRCA1/2gene mutations which might uniquely influence theirknowledge/interest/attitudes to genetic testing. Ashkenazi

Hann et al. BMC Public Health (2017) 17:503 Page 2 of 30

Jewish women also have a high level of acceptance of gen-etic testing [23, 24]. Unpublished research was not soughtfor this review.

Study searchFour databases were searched in December 2015: Psy-cInfo (OVID interface), CINAHL (EBSCO interface),Embase (OVID interface) and MEDLINE (OVID inter-face). The search terms included a combination of the-saurus (MeSH) terms and keywords such as: ‘ethnic’ or‘minorit*’ or ‘African’ or ‘Asian’, combined with ‘know*’ or‘aware*‘or ‘attitude*’ or ‘perception*’ and ‘cancer’ and ‘gen-etic testing’ or ‘genetic counselling’. [See Additional file 1for full lists of search terms.]

Study selectionFigure 1 presents the article selection process. Study ar-ticles were independently selected by two researchers[KH & MF]. Articles were initially identified by the titlesand abstracts and those which appeared eligible werereviewed in full. A reference list search was also con-ducted to identify additional articles. Any disagreementsor uncertainties on the inclusion of studies were broughtto a third researcher [AL] to make a final decision.

Data extraction and analysisA data extraction tool was designed to gather relevantinformation on the study design, methods, and resultson awareness, knowledge, attitudes, and perceptions re-lating to genetic testing/counselling for cancer risk.A thematic synthesis of the qualitative research was car-

ried out in line with recommendations by Thomas andHarden [25]. The synthesis involved extracting and analys-ing each article’s results section, including direct quotes.An iterative process of re-reading and coding the text wasused, and a coding manual was produced based on thethemes identified. Once coding was completed a secondresearcher [MF] independently analysed 20% of the quali-tative data using the coding manual. The analysis wasorganised using the software package NVivo (version10).

Quality assessmentThe quality of each study was assessed using tried andtested tools designed by Kmet et al. [26] for quantitativeand qualitative research. The assessment tool criteria in-cluded an assessment of the description of the study ob-jective, design, methods, data analysis, and conclusions.Criteria are scored using a 3-point Likert scale: 0 (criterianot fulfilled); 1(partial fulfilment); 2 (criteria fulfilled). Afinal score is calculated by adding all relevant criteria scoresand dividing by the total possible score for each study. Theincluded articles were independently quality assessed bytwo researchers [KH & MF]. When disagreements arosethey were discussed until consensus was reached.

ResultsFor the purpose of the review we have standardised theterms used to refer to the groups included, see Table 1for a key and frequencies of groups included across thestudies. Table 2 summarises the 31 quantitative studiesand the results on ethnic minority groups’ awareness,knowledge, attitudes, and perceptions in regards to gen-etic counselling (n = 2), genetic testing (n = 27), or both(n = 2) for cancer risk. Measures used in the studieswere often non validated study specific instruments anddue to their heterogeneity across different ethnic groupsand in reference to different cancers a meta-analysis of theresults was not possible [see Additional file 2 for a list ofthe measures used]. Table 3 presents a summary of the 10qualitative and mixed methods studies, noting themes asoriginally identified. Of these 10 qualitative studies, 5 in-volved interviews, 4 involved focus groups and 1 usedboth focus groups and in-depth interviews. The tableshave been arranged by ethnicity and cancer type.A total of 82,432 individuals from African American,

Hispanic, Asian American, White, and Chinese Austra-lian ethnic groups took part in the 41 studies reviewed.Thirty-nine of the forty-one studies were conducted inthe US and two were conducted in Australia. Breast andovarian cancer or BRCA genetic testing were most fre-quently referred to within the reviewed research, twelvereferred to a number of cancers or cancer in general,three referred to prostate cancer, two to colon/colorectalcancer, and one to lung cancer.

Quantitative studiesAwarenessAwareness was measured in two ways across 15 studies;either a dichotomous Yes/No question [27–35] or ameasure asking participants how much they had heard/read about genetic testing [36–41]. Figure 2 presents thepercentage of participants who indicated awareness orhaving heard/read a fair amount/a lot about genetic test-ing for cancer risk by study and ethnic group. Withingeneral population samples of Hispanics, awareness ofgenetic testing for cancer risk ranged from 7.7% ofSpanish only speaking Hispanics [28] to 27.9% of internetusers [30]. Across two samples of Hispanics with a highrisk of cancer due to family history or a personal experi-ence of cancer, 46.7% [38] and 47.1% [41] were aware ofgenetic counselling for cancer risk in general; awarenessof genetic counselling for colon, breast, and ovarian can-cer varied. Whilst Gammon et al. [27] found 43.1% of aHispanic sample were aware of BRCA1/2 testing, thissample included only high cancer risk participants ofwhom several had already had genetic testing.Amongst African Americans, awareness of genetic

testing for cancer risk ranged from 29% [30] to 54% ingeneral population samples [35]. Awareness of the

Hann et al. BMC Public Health (2017) 17:503 Page 3 of 30

BRCA1/2 gene and mutation testing appears to be par-ticularly low, one study [35] reported that only 12% wereaware and another [33] reported that 25% of AfricanAmerican participants were aware. Two studies reportedthat around 25% of Asian Americans were aware of gen-etic testing for cancer risk [31, 32].Five studies reported that awareness significantly differed

by ethnicity, with more White participants being aware ofgenetic testing for cancer risk than Hispanics, AfricanAmericans, and Asian Americans [29, 30, 32, 33, 40]. Vada-parampil et al. [34] also reported that whilst 20% of their

Hispanic sample were aware of genetic testing for cancerrisk, awareness varied by ethnic subgroups.Only one study assessed whether awareness was asso-

ciated with intentions to have genetic counselling, andfound no significant association [41].

KnowledgeEight of the included studies measured knowledge ofhereditary cancer genetics within samples at an in-creased risk for cancer based on family history and in-cluding individuals with a personal cancer diagnosis

Articles identified through PsycINFO

N = 89

Article identified through CINAHL

N = 122

Article identified through MEDLINE

N = 462

Article identified through EMBASE

N = 813

Total from all 4 databasesN = 1486

Duplicates removedN = 526

Selected for further assessment/ discussion

N = 71

Selection for inclusionN = 40

Articles identified from reference list

searchN = 1

Articles excludedN = 889

Total to be reviewed for inclusion by title/ abstract

N = 960

Articles excluded N = 3113 did not provide information

on awareness, knowledge,attitudes and perceptions.

10 did not specifically aim to investigate an ethnic minority

group(s) or did not provide separate results by ethnic

group.4 review papers/meeting

abstracts.3 focused on recruitment

methods.1 was not on genetic testing for

cancer risk.

Final selectionN = 41

Iden

tifi

cati

onSc

reen

ing

Eli

gibi

lity

Incl

uded

Fig. 1 Study inclusion flow diagram. The flow diagram presents the processes of inclusion and exclusion to identify the final sample of articles tobe included in the review and reasons for excluding articles

Hann et al. BMC Public Health (2017) 17:503 Page 4 of 30

[41–48]. Figure 3 presents the average percentage of cor-rectly answered knowledge questions across the studies.Findings suggest that knowledge was varied but limitedamongst African Americans, with between 30% and 70% ofquestions answered correctly on average across five studies[42–46]. Two studies suggested that Hispanic participantsalso had limited knowledge, with scores of approximately 5out of 11 for hereditary breast cancer knowledge [47, 48],although a high average score of 43.8 out of 55 wasobserved for genetic counselling knowledge in a third [41].Only Donovan and Tucker [42] found a significant

difference between African American and White partici-pants’ scores on cancer genetics knowledge, indicatinglower knowledge in the African American group. How-ever the overall difference between scores was small,with a mean score of 7.7 out of 14 for Whites and 7.0for African American.High cancer genetics knowledge was found to be a sig-

nificant predictor of genetic testing uptake in one studywith African Americans [44]. In another study, those whoparticipated in genetic counselling and testing had signifi-cantly higher scores for knowledge of cancer genetics than

those who accepted neither, however cancer geneticsknowledge did not reach significance as a predictor ofgenetic testing uptake [45]. Three other studies found noassociations between cancer genetics knowledge and inter-est in or intentions to have genetic testing [41–43].

Attitudes and perceptionsSeveral different measures of attitudes/beliefs/percep-tions regarding genetic testing or counselling were used,although similar items were used across these. Somestudies reported attitude scores and others reported thenumber or percentage of participants who agreed with eachstatement. Ten studies reported that African Americanand Hispanic participants highly endorsed statementsabout the benefits of genetic counselling/testing for cancerrisk, whilst endorsing limitations to a lesser extent[36–38, 41, 42, 45, 47, 49–51]. The results indicate thatoverall participants had positive attitudes and perceivedseveral benefits of genetic testing.Highly endorsed benefits of genetic counselling/testing

for cancer risk included: to help make decisions on (en-hanced) screening (endorsed by 81–100%) [36, 42, 43,45, 49, 50]; to motivate self-examination (endorsed by90–92%)[43, 45, 49]; receipt of information for family/being able to help family and children (endorsed by 38–99%) [27, 36, 38, 41, 43, 45, 47, 49, 52]; to reduce concernabout cancer (endorsed by 60–90%) [38, 41, 43, 45, 49]; toreduce uncertainty (endorsed by 68–100%) [42, 43, 50]; toprovide a sense of personal control (endorsed by 67–79%)[37, 43, 45, 49]; to help plan for the future (endorsed by66%) [36, 52]. More variation was seen in attitudes to-wards benefits such as: to help make important life de-cisions (endorsed by 21–88%) [36, 41, 43, 45, 49, 50]; toprovide reassurance (endorsed by 42–80% of partici-pants) [38, 50, 52, 53]; to help with cancer prevention(endorsed by 31–88%) [27, 33, 50]; and to help makedecisions about preventative surgery (endorsed by 44–77%) [41, 43, 45, 50]. Similarly, Kinney et al. [44] reportthat, when asked for reasons why they enrolled for gen-etic testing, participants cited family/personal motives(62%), information (28%), and society (9%).Some of the most frequently endorsed limitations or

barriers to genetic testing/counselling included: antici-pated increased worry about offspring/relatives if test re-sult is positive (endorsed by 53–95%) [38, 41, 43, 45, 49];anticipated personal emotional reaction if test resultis positive e.g. worry, fear, anger (endorsed 31–75%)[27, 36–38, 43, 45, 49, 52, 53]; concern about family’sreaction or impact on family (endorsed by 27–52%)[36, 49, 50, 52]; concerns about confidentiality (en-dorsed by 12–72%) [40, 42, 45, 49, 50]; concern aboutjeopardising/losing insurance (endorsed by 11–58%)[33, 36, 38, 41, 43, 45, 47, 49, 50]; cost (endorsed by32–40%) [27, 47]; and feeling unable to handle the

Table 1 Key for ethnicity terms

Term usedthroughout

Includes N Studies

African American African American 23 30, 31, 32, 33, 37, 40,42, 43, 44, 45, 46, 50,51, 52, 53, 54, 55, 56,57, 59, 60, 63, 65

Black 3 29, 35, 58

African American & WestIndian

1 49

27

Hispanic Hispanic 9 28, 30, 29, 32, 34, 36,48, 53, 67

Latina/o 9 27, 31, 38, 39, 40, 41,61, 63, 66

Puerto Rican 1 47

Mexican/Mexican-American, Cuban-AmericanDominican (Republic)Central or South American

19

Asian American Asian American 4 31, 32, 53, 63,

White White 5 30, 31, 32, 53, 57,

Non-Hispanic White 1 29

Non-Latina/o White 2 27,63

Caucasian 4 33, 40, 42, 65

12

Other Other 2 29, 53

ChineseAustralian

Chinese Australian 2 62, 64

Hann et al. BMC Public Health (2017) 17:503 Page 5 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

Referencean

dcoun

try

Cancer

type

Participan

tsMetho

dsKeyfinding

sQuality

assessmentscore

African

American

Don

ovan

and

Tucker,2000

[42]

USA

Breast

(n=220)

49%

AfricanAmerican

51%

White

Female

59%

hadafamily

historyof

breast/ovarian

cancer.

Average

age=41

years

Average

13.5yearsed

ucation

Med

ianyearlyincome:$25k

Group

ssign

ificantlydifferedon

ageand

family

historyof

cancer.

Investigated

know

ledg

eof

breastcancer

andbreastcancer

suscep

tibility,and

percep

tions

ofge

netic

testing.

Participantswererecruitedat

aclinic

andcompleted

aqu

estio

nnaire

on-site.

Know

ledg

emeasureswerede

velope

dby

combining

itemsfro

mpreviously

used

measures.

•White

participantshadsign

ificantlybe

tter

know

ledg

eof

gene

ticriskof

breastcancer

(average

score=7.7ou

tof

14)than

African

Americans(average

score=7).

•Breastcancer

know

ledg

eaccoun

tedfor7%

ofthevariancein

gene

ticsknow

ledg

eand

was

theon

lysign

ificant

pred

ictorin

the

multivariate

analysis.

•AfricanAmericansweremorepo

sitive

abou

tthebe

nefitsof

testing(average

score=19)than

Whites(average

score=18).

•AfricanAmericanshadmoreconcerns

abou

tthelim

itatio

nsandrisks

oftesting

(average

score=13)than

Whites(average

score=11).

0.95

Kinn

eyet

al.2001

[43]

USA

Breastand

ovarian

(n=95)

AfricanAmerican

77%

female

Kind

redK2099allw

ithincreasedriskof

cancer

basedon

family

history.

Average

age=43

years

60%

hadat

leastsomecollege

education

83%

hadhe

alth

insurance

36%

hadannu

alho

useh

oldincome≥$30k

Investigated

know

ledg

eof

breastand

ovariancancer

suscep

tibility

andattitud

estowards

gene

tictesting.

Know

nkind

redparticipantswereinvited

totake

partby

letter.

Thesurvey

was

completed

inpe

rson

(63%

)or

ontheph

one(37%

).Includ

edaknow

ledg

emeasure

adapted

from

theNationalH

ealth

Interview

Survey.

•Participantshadlim

itedknow

ledg

e;average

scoreof

3.2ou

tof

9forknow

ledg

eabou

tbreastandovariancancer

gene

tics.

•Over50%

ofparticipantsagreed

/stron

gly

agreed

with

all(10)of

thebe

nefitsof

gene

tictesting.

•Over50%

ofparticipantsagreed

/stron

gly

agreed

with

5of

the13

limitatio

nsand

risks

ofge

netic

testing.

0.86

Kinn

eyet

al.2006

[44]

USA

Breastand

ovarian

(n=105)

AfricanAmerican

68%

female

K2099Kind

redpe

digree.

4.8%

hadape

rson

alhistoryof

cancer.

45.6%

hadat

least1firstde

gree

relativewith

breast/ovariancancer.

Average

age<40

years

59%

hadat

leastsomecollege

education

72.4%

hadhe

alth

insurance

48%

hadannu

alho

useh

oldincome≥$41k

Investigated

pred

ictorsof

BRCA

gene

tictesting,

includ

ingknow

ledg

eand

percep

tions.

Thesurvey

andbaselineinterview

took

placeat

participants'h

omeor

othe

rmutually

agreed

locatio

n.Participantswereofferedge

netic

education,

coun

selling

,and

testing.

Includ

edaknow

ledg

emeasure

develope

dfro

mCancerGen

etics

Con

sortium

survey.

Alsoinclud

edPo

weFatalism

Inventory,Religious

Prob

lem-Solving

Subscales,Percep

tions

ofPrejud

ice

scaleandothe

rmeasuresof

cancer

worry,p

sycholog

icalstatus,and

socialsupp

ort.

•Cancerge

neticsknow

ledg

ewas

sign

ificantly

high

erin

testacceptors(m

ean=7.14)than

decliners(m

ean=6.11)(maximum

scoreof

10).

•Cancerge

neticsknow

ledg

e,pe

rceivedrisk

ofcarrying

age

nemutationandageover

39weresign

ificantlyassociated

with

gene

tictestacceptance.

•Reasons

givenforno

ttestingpriorto

the

stud

y:•Lackof

know

ledg

eabou

tthetest

•Lackof

know

ledg

eabou

twhe

reto

goforcoun

selling

/testin

g•5

3%feltthat

theirregu

larHCPdidno

thave

enou

ghknow

ledg

eto

provideBRCA

relatedservices,b

ecause

they

lacked

training

anded

ucationin

gene

tics,or

wereun

awareof

BRCA

orwou

ldreferon

.•C

ostwas

abarrierifthey

hadto

pay

them

selves:86%

wou

ldbe

interested

ifitcost$15,49%

if$150,and

15%

if$1000.

0.91

Hann et al. BMC Public Health (2017) 17:503 Page 6 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

Peterset

al.2004

[33]

USA

Any,breast

andovarian

(n=351)

48%

AfricanAmerican

52%

White

63%

female

Gen

eralpo

pulatio

nAverage

age=41

years

72%

hadat

leastsomecollege

education

[significantly

differedbe

tweenAfrican

American

(63%

)and

White

(79%

)]

Investigated

awaren

essandknow

ledg

eof,and

attitud

estowards

gene

tictesting

forcancer

risk.

Participantsrecruitedin

aJury

selection

waitin

groom

.Questionn

aireswerecompleted

on-site.

Stud

yspecificqu

estio

ns/m

easures

wereused

.

•Significantly

moreWhite

(72%

&35%)

than

AfricanAmerican

(49%

&25%)

participantshadhe

ardof

gene

tictestingandBRCA

tests.

•After

adjustingforage,ge

nder,and

education,

AfricanAmericanswere

sign

ificantlymorelikelyto

repo

rtthat

thego

vernmen

twou

ldusetestingto

labe

lgroup

sas

inferio

r.•A

fricanAmericansweresign

ificantly

less

likelyto

endo

rsepo

tentialh

ealth

bene

fitsof

gene

tictesting,

includ

ing

that

itcouldhe

lptheirdo

ctor

manage

theirhe

althcare,h

elpthem

change

theirlifestyle,h

elppreven

tcancer,o

rhe

lpscientiststo

findacure.

0.95

Thom

pson

etal.

2002

[45]

USA

Breastand

ovarian

(n=76)

AfricanAmerican

Female

Allwith

atleast1firstde

gree

relative

with

cancer.

Average

age=43.4years

68.4%

hadat

leastsomecollege

education

36%

hadannu

alho

useh

oldincome≥$40k

Investigated

pred

ictorsof

BRCA

testing

uptake,including

know

ledg

eand

percep

tions.

Partof

along

itudinalstudy.

Participantswererecruitedfro

ma

commun

itycancer

clinicandoffered

gene

ticcoun

selling

andtesting.

Includ

edabreastcancer

know

ledg

emeasure

andape

rceivedbe

nefitsand

barriersof

BRCA

testingmeasure

develope

dforthestud

y.Alsoinclud

edtheintrusivethou

ghtssubscaleof

IES.

•Gen

eralbreastcancer

know

ledg

e;on

averageparticipantswerecorrecton

42.5%

ofthe8qu

estio

ns.

•Cancerge

neticsknow

ledg

e;on

averageparticipantswerecorrecton

45.4%

ofthe14

questio

ns.

•6/7

bene

fitsof

testingwerehigh

lyen

dorsed

(≥70%).

•7/14barrierswereen

dorsed

by≥50%

ofthewom

en.

0.82

Edwards

etal.

2008

[49]

USA

Breastand

ovarian

(n=140)

55.7%

AfricanAmerican

44.3%

WestIndian

Female

69%

hadpe

rson

allyexpe

rienced

breast

cancer.

Average

age=45.6years

63%

hadat

leastsomecollege

education

86%

hadhe

alth

insurance

51%

hadannu

alho

useh

oldincome≥$35k

Investigated

attitud

estowardBRCA

testingandassociationwith

tempo

ral

orientation.

Participantswererecruitedby

physicians

andself-referral.

Involved

ateleph

onesurvey.

Acoloured

answ

ercard

was

posted

toparticipants.

Includ

edapreviouslyvalidated

measure

oftempo

ralo

rientation,

andage

netic

testingpros

andcons

measure

develope

dforthestud

yfro

mprevious

research.

•Participantshigh

lyen

dorsed

bene

fits,

indicatin

gan

overallp

ositive

attitud

etowards

gene

tictesting.

•91–97%

agreed

/stron

glyagreed

with

pros

relatin

gto

family.

•83–91%

agreed

/stron

glyagreed

with

statem

entsindicatin

gthat

testresults

wou

ldmotivatethem

tocarryou

tcancer

surveillancebe

haviou

rs.

•70–76%

agreed

/stron

glyagreed

with

positivestatem

entson

person

alcontrol.

Fewer

participantsen

dorsed

potential

limitatio

nsof

gene

tictesting.

•52%

wereconcerne

dabou

tthe

impact

testingwou

ldhave

ontheir

family.

•72%

indicatedthat

they

wou

ldworry

abou

tothe

rfamily

mem

bersbe

ing

carriers.

•75%

indicatedthat

they

wou

ldworry

abou

tpassingon

thege

neto

their

children.

0.95

Hann et al. BMC Public Health (2017) 17:503 Page 7 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

•Onlyfuture

tempo

ralo

rientationwas

positivelyassociated

with

overall

gene

tictestingproscore.

Hug

hesetal.2003

[59]

USA

Breastand

ovarian

(n=28)

AfricanAmerican

Female

Wom

enwith

20%

prob

ability

ofhaving

aBRCA

gene

mutationbasedon

family

historyof

cancer.

Average

age≤50

years

61%

hadsomecollege

education

37%

hadan

annu

alho

useh

oldincome

of>$50k

Investigated

associationbe

tween

cultu

ralb

eliefsandup

take

ofge

netic

riskassessmen

tandtesting.

Participantswererecruitedthroug

hmam

mog

raph

yandon

cology

clinics.

Offeredge

netic

coun

selling

andtesting.

Involved

ateleph

oneinterview

and

mailedqu

estio

nnaire.

Includ

edvalidated

measuresof

commun

alism,tem

poralo

rientation,

religious

coping

style,andcancer

fatalism.

•Testacceptorsscored

high

er(m

ean=34.8

outo

fapo

ssiblescoreof

75)for

fatalistic

beliefsof

cancerthan

those

who

declined

(mean=25.8).

•Nosign

ificant

differences

betw

een

acceptorsandde

clinerswerefoun

don

religious

coping

style,commun

alism,

ortempo

ralo

rientation.

0.85

Kessleret

al.2005

[50]

USA

Breastand

ovarian

(n=74)

AfricanAmerican

Female

Wom

enwith

a5–10%

prob

ability

ofhaving

aBRCA

1/2mutation.

76%

hadpe

rson

alhistoryof

cancer.

57%

hadfamily

historyof

cancer.

Average

age≤50

years

72%

hadat

leastsomecollege

education

53%

hadan

annu

alho

useh

oldincome

of>$35k

Investigated

attitud

estowards

BRCA

gene

tictesting.

Participantswererecruitedby

staffat

health

clinicsandcommun

ityho

spitals,h

ealth

fairs,b

reastcancer

supp

ortgrou

ps,and

throug

hself-referrals

from

newspaper

adverts.

Involved

ateleph

oneinterview.

Includ

edthePo

weFatalism

Inventory,

adaptedvalidated

itemsof

percep

tions

ofcancer

riskandcontrol,previously

validated

measuresof

gene

tictesting

attitud

esandintentions.

•Participantsen

dorsed

ahigh

errate

ofbe

nefitsthan

limitatio

ns.M

eanpro

scorewas

18.69andmeanconscore

was

10.05(out

ofpo

tential7–21).

•The

mostim

portantbe

nefit

was

cancer

preven

tion,

which

was

ratedas

very

impo

rtantby

88%

ofparticipants.

•The

mostim

portantlim

itatio

nwas

concernabou

tfamily

impact,w

hich

was

ratedas

very

impo

rtantby

27%

ofparticipants.

•Wom

endiagno

sedwith

cancer

and

thosewho

perceivedahigh

errisk

weremorelikelyto

repo

rtgreatercons

ofge

netic

testing.

0.91

Sussnere

tal.2011

[51]

USA

Breastand

ovarian

(n=160)

AfricanAmerican

Female

64%

hadpe

rson

allyexpe

rienced

breast/

ovariancancer.

76%

hadafamily

historyof

cancer.

Average

age=45.3years

84%

hadhe

alth

insurance

71%

hadmorethan

ahigh

scho

oldiplom

a71%

hadan

annu

alincomeof

>$20k

Investigated

influen

ceof

ethn

ic,cultural

andracialiden

tityon

percep

tions

ofge

netic

testingforsuscep

tibility

tobreast/ovariancancer.

Second

aryanalysisof

data

from

aprevious

stud

yin

which

participants

wererecruitedthroug

hph

ysician

referral,the

wom

en’sow

ninitiation,

orcommun

ityou

treach.

Participantswereofferedge

netic

coun

selling

andtesting.

Involved

ateleph

oneinterview

Includ

edtheMulti-grou

pEthn

icIden

tity

Measure,the

Multid

imen

sion

alInventoryof

BlackIden

titycentrality

subscale,the

Africentrism

scaleand

previouslyvalidated

itemsmeasurin

gge

netic

testingpros,con

s,and

concerns

ofabuses.

•Average

scores

(out

of5,strong

lydisagree-stron

glyagree)

indicate

positiveattitud

estowards

advantages

ofgenetic

testing:

•4.2forpros

ofge

netic

testing

•4.4forfamily

relatedpros

•Average

scores

(out

of5,strong

lydisagree-stron

glyagree)

indicate

disadvantage

s/risks

ofge

netic

testingareless

endo

rsed

:•2

.4forcons

ofge

netic

testing

•3.2forfamily

relatedcons

ofge

netic

testing

•1.8forstigmarelatedto

gene

tictesting

•2.2forconfiden

tialityconcerns

relatin

gto

gene

tictesting

•1.9forconcerns

abou

tabuses

from

gene

tictesting

0.95

Hann et al. BMC Public Health (2017) 17:503 Page 8 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

Sussnere

tal.2009

[56]

USA

Breast

(n=146)

AfricanAmerican

Female

Atriskof

BRCA

1/2mutation.

70%

person

alhistoryof

breast/ovarian

cancer.

81%

with

afamily

historyof

breast/ovarian

cancer.

Average

age=45.8years

88%

hadhe

alth

insurance

67%

hadmorethan

ahigh

scho

oldiplom

a67%

hadan

annu

alincomeof

≥$20k

Investigated

associations

betw

een

accultu

ratio

nandpe

rcep

tions

ofge

netic

testing.

Partof

alarger

long

itudinalstudy.

Participantswererecruitedviaanothe

rstud

yandcommun

ityou

treach

Gen

eticcoun

selling

was

provided

Involved

ateleph

oneinterview.

Includ

edtheIm

pact

ofEven

tsscale,

andapreviouslyvalidated

measure

of5pe

rceivedbarriersto

gene

tictesting.

•Foreign

-bornwom

enof

African

descen

trepo

rted

moreanticipation

ofne

gativeem

otionalreactions

relatedto

gene

tictestingforcancer

riskthan

US-bo

rnwom

enof

African

descen

t.•W

omen

who

hadmoreavoidance

symptom

sforbreastcancer-spe

cific

distress

repo

rted

moreanticipation

ofne

gativeem

otionalreactions

and

moreconfiden

tialityconcerns

regardingge

netic

testingfor

cancer

risk.

0.95

Weinrich

etal.2007

[46]

USA

Prostate

(n=79)

AfricanAmerican

Male

Allhigh

risk

48%

hadpe

rson

allyexpe

rienced

cancer.

Average

age=54

years

71%

hadat

leastsomecollege

education

Investigated

know

ledg

eof

hereditary

prostate

cancer.(Pilotstud

y)Participantswererecruitedfro

mfour

areasas

partof

alarger

stud

y.Involved

ateleph

oneinterview

using

theKn

owledg

eof

Hered

itary

Prostate

CancerScale.

•The

meanknow

ledg

escorewas

6.34

outof

9;thiswas

interpreted

aslow

know

ledg

eof

hereditary

prostate

cancer.

•Age

was

apred

ictorof

know

ledg

e;olde

r(>60)men

hadmoreknow

ledg

ethan

youn

ger(<40)men

•Edu

catio

nleveld

idno

tpred

ict

hereditary

prostate

cancer

know

ledg

e.

0.80

Weinrichet

al.

2002

[55]

USA

Prostate

(n=320)

African-American

Male

App

roximately45%

with

somefamily

historyof

prostate

cancer.

Average

age=50–59years

54.4%

hadat

leastsomecollege

education

App

roximately40.2%

hadan

annu

alincome≥$25,021

Investigated

pred

ictorsof

intent

tohave

age

netic

prostate

cancer

suscep

tibility

assessmen

t.Participantswererecruitedfro

mtw

oresearch

stud

ies.

Involved

quantitativeinterviews.

Usedastud

yspecificsurvey

ofintentions

totestandwhy.

•Com

men

tsaccompanying‘yes’

respon

sesto

interestqu

estio

ninclud

ed:

•‘Itcouldhe

lpsave

mylife’

•‘Ifthetestdo

esno

taffect

myhe

alth’

•‘Iw

ould

likeresults

oftest’

•‘Thisisthesecond

timeI’vehada

prostate

(screening

test)he

re’

•‘Interested

inparticipatingin

all

surveys’

•‘Iam

glad

tobe

partof

test’

•Com

men

tsaccompanying‘no’

respon

sesinclud

ed:

•‘Gen

eticstestsmay

lead

todiscrim

ination’

•‘Toomuchdraw

ingof

bloo

d;tested

allthe

time ’

0.75

Myerset

al.2000

[54]

USA

Prostate

(n=413)

AfricanAmerican

Male

Gen

eralpo

pulatio

n:7.5%

hadafamily

historyof

prostate

cancer.

Average

age≥50

years

46.7%

had12

ormoreyearsof

education

Investigated

variables

associated

with

intentionto

have

atestforprostate

cancer

riskin

thefuture.

Involved

astud

yspecificteleph

one

survey

ofitemsbasedon

the

Preven

tativeHealth

Mod

eland

intentions

tohave

testing.

•Weakintentions

tohave

prostate

cancer

risktestweredu

eto:

•Cost(58%

)•Tim

e(52%

)•W

orry

that

othe

rsmight

findou

tabou

tthetestresults

(47%

)•B

eliefthat

testresultmight

bewrong

(45%

)•W

orry

that

testresultmight

indicate

anincreasedrisk(43%

)

0.86

Hann et al. BMC Public Health (2017) 17:503 Page 9 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

•Con

cern

abou

tph

ysicaldiscom

fort

oftesting(42%

)

Satia

etal.2006

[37]

USA

Colon

(n=658)

AfricanAmericans

57%

female

6%hadpe

rson

allyexpe

rienced

cancer,

9%hadafirstde

gree

relativewith

cancer.

Average

age=43.9years

76%

hadmorethan

ahigh

scho

oldiplom

a

Investigated

attitud

estowards

gene

tictestingforcoloncancer

riskandfactors

associated

with

intentions

tohave

testing.

Participantswererand

omlyselected

from

Dep

artm

entof

Motor

Vehiclerosters.

Involved

amail,internet,o

rteleph

one

survey.

Includ

edge

netic

testingfamiliarity,

intentions,and

attitud

esqu

estio

nsadaptedfro

mprevious

research.

•Awaren

essof

gene

tictesting:

•19.5%

ofparticipantshadhe

ard/read

nothing

•33.6%

hadhe

ard/read

alittle

•30.9%

hadhe

ard/read

some

•11.6%

hadhe

ard/read

alot

•Positive

attitud

estowards

gene

tictestingforcoloncancer:

•79.1%

feltitwou

ldgive

them

more

controlo

vertheirlives

•78.2%

said

itwas

good

toknow

future

riskof

cancer

•Resultsregardingdiscrim

ination

weremixed

with

roug

hlyathird

agreeing

(32.8%

),disagreeing(31.9%

)andno

tbe

ingsure

(31.3%

)that

gene

tictestingcouldlead

todiscrim

ination.

1.00

McBrideetal.2005

[58]

USA

Lung

(n=95)

98%

AfricanAmerican

73%

female

College

stud

entswho

wereno

tregu

lar

smokersbu

thadeither

nevertried

smokingor

had.

Average

age=19.9

Investigated

beliefsabou

ttheassociation

betw

eenge

neticsandlung

cancer,and

interestin

ahypo

theticaltestforcancer

risk.(Pilotstud

y)Involved

twoteleph

onesurveysspaced

fivemon

thsapart.

Usedastud

yspecificsurvey

includ

ing

itemson

useof

cigarettes,susceptibility

tosm

okingandge

netic

risk,andinterest

inge

netic

testing.

•Onlype

rcep

tionof

beingat

high

errisk

oflung

cancer

from

smokingwas

sign

ificantlyassociated

with

interest

intesting.

0.91

Hisp

anic

Vadaparampiletal.

2006

[34]

USA

Any

(n=4313)

Hispanic

56.9%

female

Gen

eralpo

pulatio

n2.5%

hadpe

rson

allyexpe

rienced

cancer.

16.5%

hadparentswith

cancer.

Average

age=25–39years

29%

hadat

leastsomecollege

education

66.6%

hadhe

alth

insurance

Investigated

awaren

essof

gene

tictestingforcancer

riskandtheinfluen

ceof

accultu

ratio

n.Usesdata

takenfro

mtheNational

Health

Interview

Survey,w

hich

used

stratifiedsamplingto

oversample

AfricanAmericansandHispanics.

Involedan

in-personcompu

ter-assisted

househ

oldinterview.

•20%

hadhe

ardof

gene

tictestsfor

increasedcancer

risk.

•Awaren

essvariedby

sub-ethn

icgrou

p,Pu

erto

Ricans

weremostaw

are(27.3%

)andMexicanswereleastaw

are(14.3%

).•3

4.8%

ofthosewith

ahigh

levelo

fEnglish

lang

uage

preferen

cehadhe

ardof

tests,

comparedwith

18.5%

with

aninterm

ediate

leveland

9.5%

with

alow

levelo

fEnglish

lang

uage

preferen

ce.

•Awaren

esswas

twiceas

high

amon

gthose

born

intheUSthan

thosebo

rnin

anothe

rcoun

try.

•Low

ertestaw

aren

esswas

associated

with

decreasing

educationallevel;tho

sewho

onlycompleted

high

scho

olor

didno

tcompletehigh

scho

olwereless

likelyto

beaw

areof

gene

tictestingthan

those

with

acollege

education.

0.95

Hann et al. BMC Public Health (2017) 17:503 Page 10 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

•Testaw

aren

esswas

inverselyassociated

with

noten

gaging

inph

ysicalactivity

and

perceiving

low

orinterm

ediate

cancer

occurren

cein

thefamily.

Hecketal.2008

[28]

USA

Any

(n=10,883)

Hispanic

Male&female

Gen

eralpo

pulatio

n:24.2%

repo

rtfamily

historyof

cancer.

Average

age≥50

years

Investigated

awaren

essof

gene

tictesting

forcancer

riskandtheinfluen

ceof

accultu

ratio

n.Useddata

from

theNationalH

ealth

Interview

Survey

2000

and2005.

Interviewswerecarriedou

tin

participants’hom

es.

•17.9%

ofHispanics

indicatedthey

had

heardof

gene

tictesting.

•7.7%

ofparticipantswho

onlyspoke

Spanishwereaw

areof

gene

tictesting

forcancer

risk

•PuertoRicans

andothe

rSpanishhad

high

eraw

aren

essthan

Mexicans/Mexican-

Americans

•Awaren

esswas

associated

with

greater

useof

Englishandleng

thof

stay

intheUS

•Awaren

esswas

also

associated

with

healthcare

visitin

past12

mon

ths,greater

educationalattainm

ent,andreside

ncein

theMidwest.

1.00

Sussnere

tal.2009

[39]

USA

Any

(n=103)

Hispanic

Female

70%

hadpe

rson

allyexpe

rienced

cancer.

81%

hadafamily

historyof

cancer.

Average

age=45.19years

27.2%

hadmorethan

ahigh

scho

oldiplom

a79.8%

hadhe

alth

insurance

12.9%

hadan

annu

alincome≥$20k

Investigated

theinfluen

ceof

accultu

ratio

non

attitud

es,b

eliefsandfamiliarity

with

gene

tictestingforcancer

risk.

Second

aryanalysisof

previouslycollected

data.

Involved

aninterviewer-adm

inistered

survey

completed

attherecruitm

ent

site

(70%

)or

viateleph

one(30%

).Includ

edtheGroup

-Based

Med

ical

MistrustScale,andmeasuresof

accultu

ratio

n,familiarity

ofge

netic

testingforcancer

risk,andpe

rceived

bene

fits,barriersandconcerns

ofabuses.

•Meange

netic

testingaw

aren

essscorewas

7.4ou

tof

16.

•With

increasing

accultu

ratio

nHispanics

weremorefamiliar

with

gene

tictesting

forcancer

risk.

•Meanscoreforpe

rceivedbe

nefitsof

gene

tictestingwas

24.8ou

tof

30.

•With

increasing

accultu

ratio

nand

decreasing

med

icalmistrust,Hispanics

weremorelikelyto

cite

perceived

bene

fitsrelatedto

gene

tictestingfor

cancer

risk.

•Meanscoreforpe

rceivedbarriersto

gene

tictestingwas

29.7ou

tof

55.

•With

decreasing

accultu

ratio

nand

increasing

med

icalmistrust,Hispanics

weremorelikelyto

cite

perceivedbarriers

toge

netic

testingforcancer

risk.

•Meanscoreforconcerns

ofabuses

was

11.3ou

tof

25.

•With

increasing

med

icalmistrustand

age,Hispanics

weremorelikelyto

cite

concerns

abou

tabuses

ofge

netic

testing

forcancer

risk.

0.86

Vadaparampiletal.

2010

[48]

USA

Breastand

ovarian

(n=53)

Hispanic

Female

Allhigh

riskforcancer.

25%

hadpe

rson

alexpe

rienceof

breast/

ovariancancer.

64.6%

hadafirstde

gree

relativewith

breastcancer.

Investigated

know

ledg

eof

hereditary

breast/ovariancancer.(Pilotstud

y)Participantswererecruitedfro

mclinics,

supp

ortgrou

ps,h

ealth

fairs,foo

dpantries,

usingflyersandmed

iapressreleaseetc.

Interviewed

inpe

rson

atavenu

eselected

bytheparticipants.

•App

roximatelyhalfof

thehe

reditary

breastcancer

questio

nswereansw

ered

correctly,m

eanscoreof

5.15

outof

11.

•Tho

sewith

person

albreastcancer

had

less

know

ledg

ethan

thosewith

out

breastcancer.

0.85

Hann et al. BMC Public Health (2017) 17:503 Page 11 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

56.8%

hadafirstde

gree

relativewith

ovariancancer.

Average

age=35–44years

52.9%

hadat

leastsomecollege

education

57%

hadhe

alth

insurance

52.8%

hadan

annu

alincome>$20k

Acculturatio

nmeasurestakenfro

mNationalH

ealth

Interview

and

know

ledg

emeasure

develope

dby

NCHGRCancerGen

eticStud

ies

Con

sortium.

Gam

mon

etal.

2011

[27]

USA

Breastand

ovarian

(n=147)

42.9%

Hispanic

57.1%

White

Female

Allhigh

riskor

cancer

survivors.

18.4%

hadpriorhe

reditary

breast

cancer

coun

selling

andge

netic

testing.

Average

age=54.5years

68%

hadmorethan

ahigh

scho

oldiplom

a78.5%

hadan

annu

alho

useh

old

income≥$30k

95.1%

hadhe

alth

insurance

Group

ssign

ificantlydifferedon

person

alhistoryof

cancer

Investigated

awaren

essandattitud

esin

relatio

nto

BRCA

gene

ticcoun

selling

andtesting.

Participantswererecruitedthroug

hthe

NationalC

ancerInstitu

te’sCancer

Gen

eticsNetworkby

mailedletters.

Involved

acompu

ter-assisted

teleph

one

interview.

Stud

yspecificqu

estio

ns/m

easureswere

used

.

•43.1%

ofHispanicwom

enand65.2%

ofWhite

wom

enwereaw

areof

BRCA

1/2testing.

Hispanicrespon

sesto

open

ende

dqu

estio

ns:

•Ben

efits

ofBRCA

1/2testing:

being

ableto

tellfamily

mem

berssuch

asdaug

htersabou

ttestresult(37.7%

);wou

lden

hancepreven

tion(31.1%

);pe

rson

alknow

ledg

eandaw

aren

ess

ofrisk(17.0%

).Just1.9%

referred

tomakinghe

althylifestylechange

sand

2.8%

said

forpe

aceof

mind.

•Lim

itatio

ns:p

oten

tialemotional

distress

(55.3%

)andconcernof

optin

gforun

necessarytreatm

ent(10.5%

).•B

arriers:Fear(36.8)

andcost(32.4%

)werethemostcommon

lysigh

ted

barriersto

gene

tictesting,

followed

byavailability(14.7%

)andlack

ofaw

aren

ess(13.2%

).•O

nly1Hispanicwom

ansited“cultural

barriers”as

abarrierto

gene

tictesting

0.95

Ramirezetal.2006

[36]

USA

Breast

(n=48)

Hispanic

67%

female

Nope

rson

alhistoryof

breastcancer

buthada

family

mem

berwith

breastcancer

(spo

use,

daug

hter,sister,mothe

r,aunt,firstcousin).

Average

age=44

years

42%

hadat

leastsomecollege

education

81%

hadhe

alth

insurance

56%

hadan

annu

alho

useh

oldincome>$25k

Investigated

awaren

ess,interest,and

percep

tions

ofge

netic

testingfor

breastcancer

risk.(Pilotstud

y)Patientsat

cancer

clinics,organisatio

nsandsupp

ortgrou

pswereprovided

with

inform

ationto

pass

onto

family,tho

seinterested

inparticipatingcontacted

theresearchers.

Involved

structured

interviewscond

ucted

inEnglishor

Spanish.

Usedvalidated

measurestakenfro

mprevious

research.

•Awaren

essof

breastcancer

gene

tictesting:

•56%

hadhe

ard/read

almostno

thing

•27%

hadhe

ard/read

relativelylittle

•17%

hadhe

ard/read

afairam

ount/a

lot

•Ben

efits

werepe

rceivedas

sign

ificantly

greaterthan

therisks/limitatio

ns•P

erceived

bene

fitsof

breastcancer

gene

tictesting:

•66%

(stron

gly)

agreed

they

couldplan

forthefuture

•21%

(stron

gly)

agreed

they

couldmake

decision

sabou

tge

ttingmarried

•76%

said

learning

iftheirchildren

areat

risk

•81%

said

totake

totake

better

care

ofthem

selves

•83%

said

toge

tscreen

ingtestsmore

often

•Perceived

risks/limitatio

ns:

•31%

wereconcerne

dabou

ttheir

emotionalreaction

0.75

Hann et al. BMC Public Health (2017) 17:503 Page 12 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

•20%

wereconcerne

dabou

ttheir

partne

r’sreactio

n•3

1%wereconcerne

dabou

ttheir

family’sreactio

n•1

5%feltun

sure

that

thetestisaccurate

•26%

wou

ldworry

abou

tho

witwou

ldaffect

theirinsurance

Sussnere

tal.2010

[38]

USA

Breastand

ovarian

(n=15)

Hispanic

Female

Allhigh

riskor

expe

rienced

cancer.

40%

hadpe

rson

allyexpe

rienced

cancer.

55.5%

hadafamily

historyof

cancer.

Average

age=53.4years

60%

hadat

leastahigh

scho

oldiplom

a100%

hadhe

alth

insurance

40%

hadan

annu

alincome≥$20k

Investigated

interestandbe

liefsabou

tge

netic

coun

selling

forbreastand

ovariancancer.(Pilotstud

y)Participantswererecruitedfro

mbreast

surgeryclinics.

Phase1involved

teleph

oneinterviews.

UsedGroup

-Based

Med

icalMistrust

Scale,measuresof

gene

ticcoun

selling

intentions,awaren

ess,attitud

es,and

behaviou

ralb

eliefs.

Phase1results:

•The

meanaw

aren

essscorewas

9.9

(scale4–16).

•Participantsrepo

rted

largelypo

sitive

attitud

esabou

tge

netic

coun

selling

for

breastcancer

risk(m

ean=33.1,on

8–40

scale).

•Beh

aviouralbe

liefsscorewas

high

(mean=63.5,on15–75scale),ind

icating

morepo

sitivebe

liefs.

•Ben

efits

ofBRCA

gene

ticcoun

selling

:•1

00%

agreed

/stron

glyagreed

itwou

ldhe

lpthem

initiatediscussion

swith

family

mem

bersabou

tcancer.

•93.3%

agreed

/stron

glyagreed

itwou

ldredu

cefear

andconcerns

abou

tde

veloping

orhaving

arecurren

ceof

breastcancer

forthem

selves.

•Barriersto

BRCA

gene

ticcoun

selling

:•7

3.3agreed

/stron

glyagreed

gene

ticcoun

selling

couldjeop

ardize

health

insurance.

•53.3%

agreed

/stron

glyagreed

gene

ticcoun

selling

wou

ldcausethem

toworry

abou

tthecancer

riskof

family

mem

bers.

•40%

agreed

/stron

glyagreed

talkingto

age

netic

coun

sellorwou

ldcausedistress.

1.00

Sussneretal.2013

[41]

USA

Breastand

ovarian

(n=120)

Hispanic

Female

Allhigh

riskor

expe

rienced

cancer.

58.3%

hadpe

rson

allyexpe

rienced

cancer.

46.7%

hadafamily

historyof

cancer.

Average

age=47.5

49.2%

hadmorethan

ahigh

scho

oldiplom

a88.7%

hadhe

alth

insurance

56.4%

hadan

annu

alho

useh

oldincome

≥$20k

Investigated

facilitatorsandbarriersof

BRCA

gene

ticcoun

selling

.Participantswererecruitedat

aclinic.

Involved

ateleph

oneinterview.

Includ

ed5measuresof

accultu

ratio

n,theGroup

-based

Med

icalMistrustScale,

perceivedriskof

BRCA

1/2mutation,

awaren

essof

gene

ticcoun

selling

for

cancer

riskandmeasuresof

attitud

esandbe

liefsof

BRCA

gene

ticcoun

selling

.(M

ostmeasurespreviouslyde

velope

dby

theteam

).

•Awaren

essof

gene

ticcoun

selling

averagescore=9.1(possiblerang

eof

4–16)

•Heard/readabou

tge

netic

coun

selling

forbreast/ovariancancer

risk,mean=2.1(possible

rang

eof

1–5)

•Kno

wledg

eabou

tge

netic

coun

selling

,samplemean=43.8(possiblerang

eof

11–55)

•Com

petin

glifeconcerns

was

the

strong

estpred

ictorof

intentions

tomakeage

netic

coun

selling

appo

intm

ent.

Other

sign

ificant

pred

ictorsinclud

edpe

rceivedriskof

carrying

aBRCA

mutationandhaving

aph

ysicianreferral

forge

netic

coun

selling

0.91

Hann et al. BMC Public Health (2017) 17:503 Page 13 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

Vadaparampiletal.

2011

[47]

USA

Breastand

ovarian

(n=45)

Hispanic(PuertoRicans

from

Tampa

and

Puerto

Rico)

Female

Highriskor

expe

rienced

cancer.

44.5%

hadpe

rson

allyexpe

rienced

cancer.

31.1%

hadafamily

historyof

breastcancer.

4.4%

hadafamily

historyof

ovariancancer.

Average

age=31–50years

62.2%

hadat

leastsomecollege

education

55.6%

hadan

annu

alincome>$20k

Investigated

know

ledg

e,interestand

attitud

estowardge

netic

testingfor

hereditary

breastandovariancancer.

(Pilotstud

y)Participantswererecruitedthroug

hcommun

ity-based

outreach

metho

dsanddistrib

utionof

flyers.

Thestud

yinvolved

in-dep

thface-to-face

interviewsandstructured

quantitative

surveys,bu

tthisarticlefocusses

juston

thequ

antitativesurvey

data.

Includ

edPo

weFatalism

Inventory,a

Familism

scaleandpreviouslyvalidated

measuresof

hereditary

cancer

know

ledg

eandattitud

estowards

gene

tictesting.

•The

averagescoreforhe

reditary

breast/

ovariancancer

know

ledg

ewas

5.07

(out

of11).

•Tho

sewith

less

than

ahigh

scho

oled

ucationweresign

ificantlyless

know

ledg

eableabou

the

reditary

breast/ovariancancer

than

those

who

graduated,

andthosewho

had

hadadiagno

sisof

breastcancer

before

age50

weremore

know

ledg

eablethan

those

with

outadiagno

sis.

•Moreparticipantsrepo

rted

that

they

strong

lyagreed

/agreedwith

thepo

sitiveattitud

inalitems(facilitators)

comparedto

thene

gativeattitud

inal

items(barriers),althou

ghthiswas

not

statisticallysign

ificant.

•The

mostcommon

lyen

dorsed

facilitator

forge

netic

testingwas

ahe

althcare

provider

recommen

datio

n(100%

Puerto

Rico,90%

Tampa).

•The

mostcommon

lyen

dorsed

barrierwas

that

itmight

costtoo

much(32%

Puerto

Rico,40%

Tampa).

0.90

Multiplegrou

ps

Hon

da2003

[29]

USA

Any

(n=31,886)

66%

White

14%

AfricanAmerican

16.6%

Hispanic

3.5%

Other

52.1%

female

Gen

eralpo

pulatio

n:9.8%

repo

rthigh

risk

ofcancer.

Average

age=30–49years

51.5%

hadat

leastsomecollege

education

84.7%

hadhe

alth

insurance

75.3%

hadafamily

annu

alincome>$20k

Thegrou

pssign

ificantlydifferedon

income,

educationandhe

alth

insurancecoverage

.

Investigated

awaren

essof

gene

tictesting

forcancer

risk.

Useddata

from

theNationalH

ealth

Interview

Survey

2000.

Survey

carriedou

tin

participants’hom

es.

•Awaren

essof

gene

tictestingfor

cancer

riskby

ethn

icity:

•47.2%

ofWhite

•30.9%

ofAfricanAmerican

•19.1%

ofHispanic

•30.5%

ofothe

r•A

waren

esswas

sign

ificantlyassociated

with

race,edu

catio

n,im

migratio

nstatus,

interpersonalexchang

ewith

ahe

alth

care

profession

alin

past12

mon

ths,

andself-ratedhe

alth

status.

•AfricanAmerican,H

ispanic,andothe

rethn

icgrou

psweresign

ificantlyless

awareof

gene

tictestingforcancer

riskthan

Whites.

0.95

Huang

etal.2014

[30]

USA

Any

(n=3432)

84.8%

White

6.9%

Hispanic

8.3%

AfricanAmerican

61%

female

Gen

eralpo

pulatio

nof

adultinternet

users.

Average

age=50–60years

81%

hadat

leastsomecollege

education

78.7%

hadan

annu

alincome≥$35k

Investigated

awaren

essof

gene

tictestingforcancer

riskam

ongst

internet

users.

Useddata

takenfro

mtheNational

CancerInstitu

te’sHINTS

survey.

Involved

ateleph

oneor

postalsurvey

•Significantly

moreWhite

participants

wereaw

areof

gene

tictestingforcancer

risk(38.9%

)than

AfricanAmerican

(29%

)andHispanic(27.9%

)participants.

•Differen

cein

awaren

essbe

tweenWhites

andHispanics

was

foun

dto

beexplaine

dby

having

heardof

clinicaltrialsand

Cen

tres

ofDisease

Con

trol,age

,edu

catio

n,

1.0

Hann et al. BMC Public Health (2017) 17:503 Page 14 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

Thegrou

pssign

ificantlydifferedon

age,

educationandincome.

fatalism,informationseeking,

anddiscussing

onlineinform

ationwith

ado

ctor.

•Differen

cein

awaren

essbe

tweenWhites

andAfricanAmericanswas

foun

dto

beexplaine

dby

trustin

inform

ationfro

mreligious

organisatio

ns,h

avinghe

ardof

clinicaltrialsandCen

tres

ofDisease

Con

trol,edu

catio

n,livingregion

,age

,inform

ationseeking,

fatalism.

•Fatalistic

beliefs-Hispanics

(31.6%

)weremorelikelyto

believe

that

“preventionof

cancer

isno

tpo

ssible”

than

AfricanAmericans(22.9%

)and

Whites(17.7%

).

Paganet

al.2009

[32]

USA

Any

(n=25,364)

66.3%

White

17.6%

Hispanic

13.0%

AfricanAmerican

2.8%

Asian

51%

female

Gen

eralpo

pulatio

nAverage

ageWhites≥60

Average

ageothe

rs=18–29years

Investigated

awaren

essof

gene

tictestingforcancer

risk.

Useddata

takenfro

mNationalH

ealth

Interview

Survey

2005.

Involved

acompu

ter-assisted

interview

attheparticipants’hom

e.Stud

yspecificqu

estio

ns/m

easures

wereused

.

•Awaren

essof

gene

tictestingfor

cancer

risk:

•48.2%

ofWhites

•19.0%

ofHispanics

•30.8%

ofAfricanAmericans

•27.7%

ofAsians

•Differen

cein

awaren

essbe

tween

White

andHispanicparticipantswas

foun

dto

beexplaine

din

partby

nativity/le

ngth

ofreside

ncyand

education.

•Differen

cein

awaren

essbe

tween

White

andAfricanAmerican

participantswas

foun

dto

beexplaine

din

partby

educationandregion

oftheUS.

•Differen

cein

awaren

essbe

tween

White

andAsian

Americanswas

foun

dto

beexplaine

din

partby

nativity/le

ngth

ofreside

ncy.

1.0

Thom

pson

etal.

2003

[40]

USA

Any

(n=273)

42%

AfricanAmerican

40%

Hispanic

18%

White

Female

30%

hadat

leaston

efirstde

gree

relative

with

cancer.

Average

age=46.1years

48%

hadmorethan

ahigh

scho

oldiplom

a89%

hadhe

alth

insurance

45%

hadan

annu

alho

useh

oldincome≥$20k

Thegrou

pssign

ificantlydifferedon

income,

educationandhe

alth

insurancecoverage

Investigated

negativepe

rcep

tions

ofge

netic

testingforcancer

risk,aw

aren

ess

ofge

netic

testing,

andmed

icalmistrust.

Participantswererecruitedthroug

hho

spitalsandcommun

ityhe

alth

care

centres.

Survey

completed

attherecruitm

ent

site

orover

theph

one.

UsedtheGroup

BasedMed

icalMistrust

Scale,measuresof

awaren

essof

gene

tictestingandconcerns

ofabuses

develope

dforthestud

y,andameasure

ofpe

rceived

disadvantage

sof

gene

tictestingfor

cancer

riskbasedon

previous

research.

•Participantswho

hadhe

ardalmost

nothing/relativelylittle

abou

tge

netic

testingforcancer:

•50%

White

•63.5%

AfricanAmerican

•75.2%

Hispanic

•Hispanicwom

enweresign

ificantlymore

likelyto

have

repo

rted

alow

levelo

faw

aren

essof

gene

tictestingforcancer

risk.

•AfricanAmericans(m

ean=29.2)and

Hispanics

(mean=27.3)hadsign

ificantly

high

ermed

icalmistrustscores

outof

60than

White

(mean=19.4).

•After

controlling

forsign

ificant

covariates

therewereno

sign

ificant

differences

0.91

Hann et al. BMC Public Health (2017) 17:503 Page 15 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

betw

eenethn

icgrou

pson

gene

tictesting

disadvantage

s.•A

fter

controlling

forcovariatesAfrican

Americanswerefoun

dto

morestrong

lyagreewith

concerns

ofabuses

compared

toWhite

participants.

•AfricanAmericansandHispanics

were

morelikelyto

agreethat

testingwillbe

used

toshow

theirethn

icgrou

pisno

tas

good

asothe

rs,tointerfe

rewith

the

way

God

intend

edpe

opleto

be,and

interfe

rewith

thenaturalo

rder

oflife.

AfricanAmericansweremorelikelyto

believe

that

gene

tictestingallows

doctorsto

play

God

than

White

participants.

Arm

strong

etal.

2012

[57]

USA

Any

(n=337)

62.0%

White

38.0%

AfricanAmerican

63.5%

female

Gen

eralpo

pulatio

nAverage

age=50–59years

57.6%

hadat

leastsomecollege

education

85.5%

hadhe

alth

insurance

72.2%

hadan

annu

alho

useh

old

income≥$20k

Thegrou

pssign

ificantlydifferedon

age,

educationandincome.

Investigated

interestin

gene

tictesting

forcancer

riskun

derdifferent

hypo

thetical

scen

ariosandhe

althcare

system

distrust.

Participantswererecruitedthroug

hrand

omdigitdialling.

Involved

ateleph

onesurvey.

Includ

edaconjoint

scen

ariosmeasure

develope

dforthestud

yandthe

RevisedMeasuresof

Health

Care

System

DistrustScale.

•Willingn

essto

have

gene

tictestingfor

cancer

riskdidno

tsign

ificantlydiffer

betw

eenAfricanAmericansandWhite

participantsacross

severalh

ypothe

tical

scen

arios.

•Significantly

moreAfricanAmericans

(26.6%

)hadhigh

distrustof

thehe

alth

care

system

than

Whites(17.2%

).•A

fricanAmericanshadsign

ificantly

high

erhe

althcare

mistrustscores

onthevalues

subscale(m

edian=16.4)

comparedto

Whites(m

edian=15.4).

0.95

Kaplan

etal.2006

[31]

USA

Breast

(n=1711)

40%

White

21%

Asian

American

19%

AfricanAmerican

19%

Hispanic

Female

Mam

mog

ram

userswith

nope

rson

alhistoryof

breastcancer

orabno

rmalities

inmostrecent

mam

mog

rams.

32.2%

athigh

riskof

cancer.

Average

age=54.4years

78.2%

hadcollege

degree

orhigh

er95.8%

hadhe

alth

insurance

Thegrou

pssign

ificantlydifferedon

age,

education,he

alth

insurancecoverage

.

Investigated

awaren

essof

cancer

risk

redu

ctiontherapiesinclud

ingge

netic

testingforbreastcancer

risk.

Participantswererecruitedfro

mmam

mog

raph

yfacilities.

Involved

teleph

oneinterviewsusing

stud

yspecificqu

estio

ns/m

easures.

•Participantswho

hadhe

ardof

gene

tictestingforbreastcancer

risk:

•59.4%

ofWhites

•31.0%

ofAfricanAmericans

•26.1%

ofAsian-Americans

•19.4%

ofHispanics

•Significantly

moreWhite

participants

hadhe

ardof

gene

tictestingforbreast

cancer

risk.

0.91

Arm

strong

etal.

2005

[53]

USA

Breastand

ovarian

(n=408)

Cases

i.e.atten

dedge

netic

coun

selling

(n=217)

Con

trolsi.e.d

idno

tattend

gene

ticcoun

selling

(n=191)

76.0%

White

Investigated

factorsassociated

with

uptake

ofBRCA

gene

ticcoun

selling

,includ

ingattitud

esabou

tge

netic

testing.

Participantswererecruitedthroug

hbilling

databases.

Involved

apo

sted

questio

nnaire.

•White

wom

enweresign

ificantlymore

likelyto

have

attend

edge

netic

coun

selling

forBRCA

than

AfricanAmerican

wom

en,

even

aftercontrolling

fortheprob

ability

ofaBRCA

1/2mutation,

socioe

cono

mic

factors,pe

rcep

tions

ofcancer

risk,attitud

es,

0.95

Hann et al. BMC Public Health (2017) 17:503 Page 16 of 30

Table

2Quantitativestud

iessummaryorganisedby

ethn

icity

then

cancer

type

(Con

tinued)

17.4%

AfricanAmerican

3.2%

Asian

American

2.5%

Other

1.0%

Hispanic

Female

Allwith

afirstor

second

degree

relative

diagno

sedwith

breast/ovariancancer.

Average

agecases=42.5years,

controls=53.1years

App

roximately78.4%

hadat

leastsome

college

education

App

roximately98.3%

hadhe

alth

insurance

App

roximately66.6%

hadan

annu

alho

useh

oldincome≥$30k

Includ

edapreviouslyvalidated

measure

ofcancer

worry

andmeasuresof

cancer

riskpe

rcep

tion,

attitud

estowards

gene

tictesting,

prim

arycare

visits,and

discussion

ofBRCA

1/2testing.

anddiscussion

oftestingwith

aprim

ary

care

physician.

•Use

ofge

netic

coun

selling

was

positively

associated

with

prob

ability

ofBRCA

1/2

mutation,

youn

gerage,high

erbreast

cancer

riskpe

rcep

tion,

high

erovarian

cancer

worry,and

attitud

esabou

tdiscrim

inationandreassurance

from

testing.

•126/310

White,16/71

African

American,7/13Asian

American,0/4

Hispanic,and10

‘other’p

articipants

attend

edtesting

•Ofthe55

AfricanAmericansthat

didno

thave

gene

tictesting:

•4.1%

agreed

testingcouldlead

todiscrim

ination.

•28.0%

agreed

that

testingcreates

anxiety.

•42.0%

agreed

that

testingprovides

reassurance.

•64.6%

agreed

that

testingprovides

inform

ation.

Hann et al. BMC Public Health (2017) 17:503 Page 17 of 30

Table

3Qualitativeandmixed

metho

dstud

iessummary

Referencean

dcoun

try

Cancer

type

Participan

tsMetho

dsKeyfinding

s&them

esQualityassessment

score

ChineseAu

stralian

Barlo

w-Stewart

etal.(2006)

[64]

Australia

Gen

eral

(n=15)

Chine

seAustralians

73.3%

female

3participantswith

somede

gree

offamily

historyof

cancer.

Age

rang

e=mid

20s–mid

80s

60%

hadalow

accultu

ratio

nlevel

Explored

inhe

ritance

andkinshipin

relatio

nto

hereditary

cancer.

Ethn

ographicmetho

dswereused

.Interviewstook

placeat

participantsho

me

inlang

uage

oftheirchoice.

Theinterviewswererecorded

anda

syno

psiswas

prod

uced

foreach

participant.

•Patriline

alconcep

tof

kinship.

•Aweaknessin

theline.

•Definition

sof

bloo

drelatives

andmarriage

betw

eenrelatives.

•Beliefsabou

the

reditary

cancer.

•Interestin

attend

ingafamilialcancer

service.

0.85

Eisenb

ruch

etal.

(2004)

[62]

Australia

Gen

eral

(n=16)

Chine

seAustralians

87.5%

female

Allhadfamily

historyof

cancer.

6pe

rson

allyaffected

bycancer.

Average

age=43.4years

87.5%

hadpo

stscho

oled

ucation

Explored

beliefsabou

tinhe

ritance

ofcancer.

Ethn

ographicmetho

dswereused

.Interviewstook

placeat

participants’

locatio

nof

choice

andin

lang

uage

oftheir

choice.

Theinterviewswererecorded

anda

syno

psiswas

prod

uced

foreach

participant.

•Cancer-Naturalistic

explanations.

•Inhe

ritance

andhe

reditary

(gen

etics)-

Con

ceptsof

gene

sandinhe

ritance.

•Gen

etictesting.

•Kinshipissues

andim

pact

oneliciting

family

history.

•Non

-pen

etranceof

mutations

-concep

tof

skipping

gene

ratio

ns.

•Con

cept

ofspon

tane

ousmutations

followed

byinhe

ritance

throug

hthe

gene

ratio

ns.

•Hered

itary

cancer.

•Screen

ingandsurveillance.

0.75

African

American

Adamset

al.(2015)

[35]

USA

Breastand

ovarian

(n=50)

AfricanAmerican

Female

6participantswerecancer

survivors.

Average

age=46–55years

98%

hadhe

alth

insurance

82%

hadat

leastsomecollege

education

86%

hadan

annu

alincome>$35k

Explored

wom

en’saw

aren

essand

percep

tions

ofBRCA

testing.

Participantswererecruitedin

commun

itysettings.

Survey/in

terviewscompleted

on-site.

Theresearcher

madeno

tes.

•Quantitativeresults:54%

hadhe

ardof

gene

tictestingforbreastandovarian

cancer

risk;12%

hadhe

ardof

BRCA

1/2

•Qualitativethem

es:kno

wledg

e:curren

tand

desired;

perceivedadvantages

and

disadvantage

s;barriersandmotivatorsto

participatingin

gene

tictesting.

0.85

Ford

etal.(2007)

[65]

USA

Breast

(n=20)

65%

AfricanAmerican

35%

White

Allat

riskforbreastcancer.

Average

age≤50

years

Investigated

expe

riences

ofwom

enwho

accepted

gene

tictestingandthosethat

did

notde

spite

beingeligible.

3focusgrou

pscond

uctedat

aclinic:

1.AfricanAmerican

wom

enwho

had

attend

edge

netic

coun

selling

2.AfricanAmerican

wom

enwho

hadno

tattend

edge

netic

coun

selling

3.White

wom

enwho

hadno

tattend

edge

netic

coun

selling

Questions

andanalysiswerebasedon

the

Preven

tativeHealth

Mod

el.The

focus

grou

pswererecorded

andtranscrib

ed.

•Percep

tions

ofbreastcancer.

•Kn

owledg

eof

breastcancer

andscreen

ing.

•Perceivedsuscep

tibility

tobreastcancer.

•Worry

abou

thaving

breastcancer.

•Interestin

know

ingge

netic

suscep

tibility.

•Beliefin

breastcancer

preven

tionand

curability.

•Beliefin

efficacyof

detectionand

treatm

entin

redu

cing

breastcancer

mortality.

•Beliefin

self-efficacyrelatedto

behaviou

r.•Con

cern

abou

tbe

haviou

rrelated

discom

fort.

•Supp

ortandinfluen

ceof

othe

rs.

•Characteristicsof

health

care

delivery

system

s.•Reason

spe

oplewou

ld/w

ould

notgo

toge

netic

coun

selling

.

0.85

Hann et al. BMC Public Health (2017) 17:503 Page 18 of 30

Table

3Qualitativeandmixed

metho

dstud

iessummary(Con

tinued)

•Bene

fitsof

coun

selling

.

Shep

pard

etal.

(2014)

[60]

USA

Breastandovarian

(n=21)

AfricanAmerican

Female

Allwith

mod

erateto

high

riskof

hereditary

breastcancer.

Average

age=38%

56–65years

86%

hadsomecollege

educationor

more

95%

hadhe

alth

insurance

90%

hadan

annu

alincome>$35K

Explored

awaren

essandfactorsthat

may

influen

ceup

take

ofge

netic

testing.

Participantswererecruitedthroug

hcommun

ityorganisatio

ns,w

ordof

mou

thandfro

mprevious

research.

Tape

-recorde

dfocusgrou

pswerecarried

outat

alibrary,transcribed

,and

analysed

.

•Motivatorsandbarriersto

gene

ticcoun

selling

/testin

g•Desiredinform

ationabou

tge

netic

coun

selling

/testin

g•Wom

en’sattitud

estowards

gene

ticcoun

selling

/testin

g•Inform

ationseekingandknow

ledg

eabou

tge

netic

coun

selling

/testin

g

0.95

Matthew

set

al.

(2000)

[52]

USA

Breast,o

varian,

colonandprostate

(n=21)

AfricanAmerican

62%

female

95%

hadafamily

historyof

cancer.

Average

age=42

years

66%

hadat

leastsomecollege

education

16%

hadan

annu

alincome≥$35k

Investigated

inform

ationaln

eeds

regarding

gene

tictestingforcancer

risk.

Participantswererecruitedthroug

hne

wspapers,ho

spitals,chu

rche

s,radio,

bulletin

sandfliers.

Involved

aqu

estio

nnaire

andfocusgrou

ps.

Quantitativeresults:

•Factorsratedas

impo

rtantto

participants’

decision

totake

partin

testing(m

ean

ratin

gou

tof

5):

Results

willinform

abou

ttheirchildren’s

risk(4.7)

Results

willinform

whe

ther

othe

rmem

bers

ofthefamily

shou

ldbe

screen

ed(4.6)

Con

cern

abou

tho

wresults

willaffect

them

(4.6)

Con

cern

ofho

wresults

willaffect

family

(4.5)

Testwillhe

lpplan

forthefuture

(4.4)

Testresults

willbe

reassurin

g(4.2)

Results

might

notbe

accurate

(3.9)

•Less

impo

rtantfactors:

Not

believing

that

cancer

canbe

preven

ted(3.4)

Distrust,fear,o

rbo

thof

Hospitalsor

Physicians

(3.3)

Distrust,fear,o

rbo

thof

mod

ernscienceor

med

icine(2.9)

Not

wantin

gothe

rsto

know

testresults

(2.6)

Worry

abou

tlosing

insurance(2.6)

Qualitativethem

es:

•Lack

ofaw

aren

ess

•Com

mun

icationabou

tcancer

•Percep

tions

abou

twhe

ther

cancer

issurvivable

•Em

otionalreactions

totheprocessof

gene

ticscreen

ing

•Disillusionm

entwith

themed

icaland

research

commun

ities

•Testingproced

ureandprintedmaterials

0.75

Hisp

anic

Sussne

ret

al.

(2015)

[61]

USA

Breastandovarian

(n=54)

Hispanic

Female

Allhigh

riskbasedon

family

history

ofcancer.

Explored

beliefsandattitud

eabou

tBRCA

gene

ticcoun

selling

.Con

ducted

focusgrou

ps(n

=54)and

in-dep

thinterviews(n

=30).

Focusgrou

psandinterviewswere

cond

uctedin

Spanishor

English.

•Illne

sspreven

tion

•Person

alandcommun

ityknow

ledg

eabou

tBRCA

gene

ticcoun

selling

•Perceivedbe

nefitsto

BRCA

gene

ticcoun

selling

0.95

Hann et al. BMC Public Health (2017) 17:503 Page 19 of 30

Table

3Qualitativeandmixed

metho

dstud

iessummary(Con

tinued)

26hadape

rson

alhistoryof

breast/

ovariancancer.

Average

age=49.9years

48.1%

hadmorethan

ahigh

scho

oldiplom

a92.9%

hadhe

alth

insurance

40%

hadan

annu

alincome≥$20k

Interviewswerecond

uctedin

person

orover

theph

one.Interviews/focusgrou

psweretranscrib

ed,translated,

andanalysed

.

•Culturalinfluen

ceson

gene

ticcoun

selling

participation

•Influen

ceof

previous

interactions

with

the

healthcare

system

Vadaparampil

etal.(2010)

[67]

USA

Breastandovarian

(n=53)

Hispanic

Female

Allhigh

riskof

hereditary

cancer.

20.8%

hadbreastcancer

and3.8%

hadovariancancer

<50

yearsold.

Average

age=32.1%

35–44years

52.9%

hadat

leastsomecollege

education

56.6%

hadhe

alth

insurance

52.8%

hadan

annu

alincome>$20k

Explored

awaren

essandpe

rcep

tions

ofge

netic

testingforhe

reditary

breastand

ovariancancer.

Recruitedfro

mcommun

ityorganisatio

nsandthroug

hmed

ia.

In-dep

thinterviewscond

uctedwith

participantsat

alocatio

nof

theirchoice

and

inthelang

uage

oftheirchoice.

Theinterviewswererecorded

,transcribed

,andanalysed

.

•Cancerriskfactors

•Kn

owledg

eof

gene

tictesting

•Con

cernsabou

tge

netic

testing

•Med

icalDoctorever

recommen

ded

gene

tictesting

•Preferredtype

ofmed

icaldo

ctor

recommen

datio

n•Questions

abou

tge

netic

testing

•Tellafrien

dabou

tge

netic

testing

0.95

Kinn

eyet

al.

(2010)

[66]

USA

Breastandovarian

(n=51)

Hispanic

56.9%

female

8%with

person

alhistoryof

cancer,

20%

with

family

historyof

cancer.

Average

age=42

years

Explored

attitud

esandinform

ationaln

eeds

relatin

gto

hereditary

cancer

andge

netic

testing.

5focusgrou

pscond

uctedat

acommun

itycentre

1.Wom

enwith

high

-schoo

ledu

catio

nor

less

(n=11)

2.Wom

enwith

somesecond

aryed

ucation

(n=11)

3.Men

with

anyed

ucationalb

ackgroun

d(n

=14)

4.Men

with

leadership

positio

nsin

local

commun

ityorganizatio

ns(n

8)5.Wom

enwith

leadership

positio

nsin

local

commun

ityorganizatio

ns(n

=7).

Discussions

werecond

uctedby

bilingu

alresearchers,tape

-recorde

d,andtranscrib

edin

English.

•Attitu

des/be

liefsabou

tcancer.

•Awaren

essof

andattitud

estoward

hereditary

breastandovariancancer

and

gene

tictesting.

•Preferen

cesregardingmed

ical

managem

entforhe

reditary

breastand

ovariancancer.

•Barriersto

early

detectionandrisk

redu

ctionservices

•Com

mun

icationissues

andpreferen

ces.

0.90

Multiplegrou

ps

Glenn

etal.

(2012)

[63]

USA

Breastandovarian

(n=33)

51.5%

Asian,

24.2%

AfricanAmerican,

15.2%

Hispanic

9.0%

White

Female

23breast/ovariancancer

survivors,

10high

riskbasedon

family

history.

Average

age=51.9years

87.9%

hadhe

alth

insurance

39.4%

hadacollege

education

33.3%

hadan

annu

alincome>$50k

Explored

potentialb

arriersandfacilitatorsto

gene

tictesting.

Participantsiden

tifiedthroug

hcommun

ityorganisatio

ns.

Interviewswerecond

uctedby

bilingu

alresearchers,tape

-recorde

dandtranscrib

edin

English.

•Beliefsabou

triskfactors

•Awaren

essof

gene

tictesting.

•Interestin

gene

ticcoun

selling

/testin

g.•Culturalfactorsinvolved

inge

netic

coun

selling

/testin

g.•Perceivedbe

nefitsof

testing.

•Perceivedbarriersto

testing

•Opinion

sabou

top

tions

followingtesting.

0.75

Hann et al. BMC Public Health (2017) 17:503 Page 20 of 30

test emotionally (endorsed by 3–40%) [40, 42, 49, 50]. Re-ported reasons for a lack of interest/intention to pursuetesting included cost, time, worry that others would findout, belief the results could be wrong, worry about in-creased risk, concern about discomfort, concern aboutdiscrimination, not wanting blood taken, logistical rea-sons, personal reasons, and having heard negative experi-ences of others who had undergone testing [44, 54, 55].

In studies comparing ethnic groups, results suggestthat those from ethnic minority groups may hold lesspositive views or have greater concerns about geneticcounselling/testing compared to White participants. Pe-ters et al. [33] found that compared to White partici-pants, African Americans were less likely to endorsehealth benefits of genetic testing and were more likely tobelieve that the government would use test results to

Donovan & Tucker (2000)Breast cancer genetic risk

Kinney et al. (2001)Breast cancer genetics

Thompson et al. (2002)Breast cancer genetics

GT decliners

Kinney et al. (2006)Cancer genetics, GT acceptors

Weinrich et al. (2007)Hereditary prostate cancer

Vadaparampil et al. (2010)HBOC genetics

Vadaparampil et al. (2011)HBOC genetics

Sussner et al. (2013)Genetic counselling

Hispanic African American White

Fig. 3 Percentage of correctly answered knowledge questions by ethnicity. The bar graph presents the average percentage of correctly answeredknowledge questions across the studies and ethnic groups

Honda et al. (2003) GT for cancer risk

Thompson et al. (2003) GT for cancer risk

BRCA testing

Peter et al. (2004) GT for cancer risk

Ramirez et al. (2006)* GT for breast cancer risk

Satia et al. (2006)* GT

Vadaparampil et al. (2006) GT for cancer risk

Kaplan et al. (2006) GT for breast cancer risk

Spanish only speakers

Heck et al. (2008) GT for cancer risk

Pagan et al. (2009) GT for cancer risk

GC for BC/OC risk*

GC for colon cancer risk*

Sussner et al. (2010)* GC for cancer risk

Gammon et al. (2011) BRCA testing

GC for BC/OC risk*

GC for colon cancer risk*

Sussner et al. (2013)* GC for cancer risk

Huang et al. (2014) GT for cancer risk

BRCA testing

Adams et al. (2015) GT for BC/OC risk

Other Asian American Hispanic African American White

Fig. 2 Awareness of genetic testing/counselling for cancer risk across ethnic groups. The bar graph presents the percentage of participants awareof genetic testing or counselling for cancer risk across ethnic groups. *Indicates percentage of participants that reported having read/heard a fairamount/a lot about genetic testing. BC/OC = breast/ovarian cancer; GT = genetic testing; GC = genetic counselling

Hann et al. BMC Public Health (2017) 17:503 Page 21 of 30

label groups as inferior, however there were no othersignificant differences between the groups on attitudestowards insurance and job discrimination due to genetictest results. Sussner et al. [56] also reported that foreignborn African American participants anticipated a morenegative emotional reaction to genetic testing than thoseborn in the US. Thompson et al. [40] found that AfricanAmericans and Latinas had significantly higher medicalmistrust than Whites, and were more likely to believethat genetic test results would be used to show that theirethnic group is not as good as others, or to interferewith the natural order of things. Latinas with lower levelsof acculturation and heightened medical mistrust alsocited more barriers to genetic testing [39]. However, whilstArmstrong et al. [57] found that significantly more AfricanAmericans had high healthcare mistrust, there was no sig-nificant difference between African American and Whiteparticipants’ willingness to undergo cancer risk genetictesting across several hypothetical scenarios.Attitudes and perceptions were associated with uptake,

interest, or intentions to have genetic testing in ten stud-ies. Thompson et al. [45] reported that those whoattended genetic counselling/testing perceived signifi-cantly fewer barriers and had more intrusive thoughts ofbreast cancer than those who did not. Similarly, Donovanand Tucker [42] reported that being at least somewhat in-terested in genetic testing was associated with more posi-tive beliefs. Seven studies found that perceived high risk ofcancer or of being a cancer gene mutation carrier was as-sociated with acceptance of genetic testing or interest/in-tentions to test [41–44, 50, 53, 58]; however, one studyreported that perceived cancer susceptibility was nega-tively associated with intentions [54]. Whilst Hughes et al.[59] found higher fatalistic beliefs about cancer in genetictest accepters than decliners, Myers et al. [54] indicated anegative association between fatalism about prostate can-cer prevention and intentions to receive prostate cancertesting to find out about personal risk. Other attitudes andperceptions positively associated with genetic testinguptake or interest/intentions included the absence of thebelief that testing leads to discrimination, reassurancefrom testing [53], belief in efficacy of screening [54], per-ceiving that it is good to know future risk, and believing incontrol through knowledge [37].

Qualitative studiesThe 10 qualitative studies included 31 Chinese Austra-lians, 17 Asian Americans, 120 African Americans, and163 Hispanics. The majority of participants were femaleand were at high risk of cancer based on family historyor had a diagnosis of cancer, one study used a sample ofthe general population [35]. The thematic synthesis ofthe qualitative studies identified five broad themes: in-formation deficits; cancer related anxiety; positive and

negative attitudes and perceptions; family; and serviceprovision and access.

Information deficitsAlthough some studies indicated that participants hadgood awareness and knowledge of hereditary cancer andthe involvement of genetics, these participants tended tobe those who had experienced cancer themselves or in aclose family member [60, 61], or had previously attendedgenetic counselling [62, 63].

“Genes have a big part in us having cancer. My familyhas a higher chance of getting cancer compared toother families as many of our family members hadcancer.”

Chinese Australian, Eisenbruch et al. [62]

Several studies including Chinese Australian, Hispanic,and African American samples reported that the majorityof participants had low awareness and knowledge aboutthe importance of genetics in cancer, BRCA, and genetictesting [52, 60, 61, 63–67]. Some confusion on the differ-ence between genetic counselling and genetic testing wasidentified [61, 65]. Generational differences in awareness,knowledge, and beliefs were observed in studies with His-panic and Chinese Australian samples, indicating thatolder generations were less aware and perhaps less open togenetic testing for cancer risk [61–64]. Some ChineseAustralian participants reported that older generations andthose with traditional beliefs would not accept that mu-tated genes can be passed through generations, attributingthe development of illness instead to bad luck or past baddeeds [62, 64]. The lack of understanding about hereditarycancer and unfamiliarity with genetic testing could act as abarrier to testing. Participants across several studiesexpressed a need for interventions, campaigns, and theprovision of information to increase awareness and know-ledge of cancer and genetic testing [35, 52, 60, 61, 65].

“Nobody knows it [genetic testing]. They are so faraway [from Western medicine]. The mammogram iscoming out but this is the first time I heard about thegene test.”

Asian American female, Glenn et al. [63]

“Black people aren’t into that yet. We need to knowmore about it so it will not seem so farfetched.”

African American female, Matthews et al. [52]

Closely linked to participants’ low awareness and know-ledge of cancer and genetic testing were the misconceptions

Hann et al. BMC Public Health (2017) 17:503 Page 22 of 30

held, including believing that genetic counselling preventscancer [65], stress causes cancer [52, 63], cancer is conta-gious [62], injuries cause cancer [67], and focusing orworrying about cancer causes it to develop [52, 62, 64]. It ishighlighted that some of these beliefs may make people lesswilling to discuss cancer or attend cancer services.

“I have heard that if you hit your breasts, it couldcause cancer—I saw a woman who got cancer afterbeing hit with a bottle on her breast. My mother hither stomach and then she got cancer in her uterus.The underwires in bras are not good and they harmyour breast tissue and cause cancer. I take them out.”

Hispanic female, Vadaparampil et al. [67]

Cancer related anxietyFour studies found that African American and Hispanicparticipants had fatalistic views of cancer, which they per-ceived to be an illness that cannot be cured and is associ-ated with death [52, 61, 65, 66]. Across all the includedethnic groups participants associated emotions such asworry, anxiety, and fear with cancer and genetic testing[35, 52, 60, 61, 63–67]. Participants expressed that fear ofcancer and knowing their cancer risk was a deterrent togenetic testing [35, 52, 60, 61, 63, 65–67]. Participants an-ticipated experiencing anxiety whilst undergoing geneticcounselling/testing [52, 64] and worried about the poten-tial emotional impact that a positive test result would haveon them [52, 67]. Some Hispanics reported that at timesembarrassment prevented them from seeking medicalhelp and attending cancer screening [63, 66]. Sheppard etal. [60] also found that women were fearful of making de-cisions about managing cancer risk after testing.

“… I think it will be harder for them to find out thatthey have a gene or a mutation that may cause...theirbody to develop cancer...in the future, and so I thinkfor a lot of people just knowing that they have themutation will be a lot more of anxiety source thanactually helpful…”

Hispanic, Kinney et al. [66]

However, within a Hispanic community, Sussner et al.[61] found that younger generations were less fatalisticabout cancer and were more enthusiastic towards gen-etic counselling.

“But now the word cancer is different from before…before people were ashamed, now they believe theywill beat it, it was once a taboo.”

Hispanic female, Sussner et al. [61]

Positive and negative attitudes and perceptionsInterest in and positive attitudes towards genetic testingfor cancer susceptibility were identified [60, 63, 66]. Per-sonal health benefits, such as cancer prevention, earlydetection, and risk management, were highlighted asmain benefits of genetic counselling/testing by AfricanAmerican, Hispanic, and Asian American participants[35, 52, 63, 65, 66]. Some participants felt that genetictesting would help to motivate them to be proactive to-wards their health and take action by making positivebehavioural changes [35, 65] and others considered theknowledge gained from genetic testing to be empower-ing [61, 65].

Benefits of genetic testing included “the opportunityfor early detection, instead of waiting until the cancerdevelops.”

African American female, Adams et al. [35]

Some African American and Hispanic participants dis-cussed their spirituality and God, this was not presentedas a barrier to genetic testing but as a way of seekingguidance and coping [60, 61, 67]. Some participants feltthat their spirituality was a motivator for finding outabout their cancer risk [65].

“I do believe that everything is in God’s hands,regardless. But, I don’t think that my spiritual beliefswould prevent me from going. If anything, they wouldmotivate me to go…”

African American female, Ford et al. [65]

Several negative attitudes and perceptions were heldby participants in relation to cancer and genetic testing.Discussing illnesses such as cancer was described to betaboo by Chinese Australian, African American, andHispanic participants [61, 62, 64, 66]. Participants ex-plained that in their culture there is secrecy around can-cer and individuals might not tell family if they had it[64, 66]. This taboo is closely linked to the perceivedstigma of having an illness, feeling shame and not wantingto be treated differently. Fear of discrimination by em-ployers and insurers, and stigma was discussed across sev-eral studies and highlighted as a deterrent to testing [35,60, 61, 63, 65, 66]. Among Asian American and ChineseAustralian participants, there were also concerns thatreceiving a positive genetic test result would createstigma that they have “bad genes”, which could impacton marriage prospects [63, 64].

“The stigma [would stop me from getting tested]because you always have a concern that somewhere

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this information is gonna reside on a computersomewhere; it may prevent you from gettingemployment, future insurance, or any number ofthings so that’s [my] concern. That is one thing thathas stopped me from going ahead with testing.”

African American female, Sheppard et al. [61]

Five of the eight qualitative studies conducted in the USreported that participants, particularly African Americans,discussed mistrust and disillusionment in the health caresystem [35, 52, 61, 63, 65]. Participants expressed concernsthat their genetic data would be misused [63], that theywould be experimented on [52], and that tests were of-fered to make money rather than out of necessity [52,61]. Medical mistrust among some African Americanswas reported to stem from negative events in history[52] and the “Tuskegee effect” relating to the mis-treatment of African American men in the TuskegeeSyphilis study [35]. Concerns regarding confidentiality,what would happen with genetic test results aftertesting, and concerns about private information beingdiscovered by others without the donor’s permissionwere also highlighted as important issues [52, 61, 65].

“…I felt in the past that doctors have sent me fortests just to get money. I feel that I was put throughsomething…really bad, going you know, put fear inme for something…just so the doctor could put theclaim in and I would never trust. It was terrible…”

Hispanic female, Sussner et al. [61]

“One of my girlfriends who is so narrow-minded …would say ‘I wouldn’t let those people experiment[referring to genetic testing] on me’ …. Some of myother friends, who are not as narrowminded wouldthink, ‘It’s best to find out all you can’… ‘Go for allthe tests you can’ ”

African American female, Glenn et al. [63]

Only one study, involving Asian American partici-pants, suggested that a cultural mismatch exists betweengenetic testing and their culture’s traditional medicine[63]. However, scepticism of genetic testing was identi-fied amongst Hispanic participants who were unsure ofthe need for genetic testing and screening without hav-ing symptoms [66], and others who felt there was nopoint in knowing [67]. Some African Americans wereunsure of the test accuracy or reliability for their ethnicgroup [35, 52]. Ford et al. [65] also reported that AfricanAmerican women who did not attend genetic counsel-ling perceived few benefits.

FamilyThe theme of Family was raised in discussion by manyparticipants and was described as both a motivator anda barrier to testing. Two studies reported that Hispanicsidentified a culture of prioritising family needs over theirown, resulting in a lack of time to attend health appoint-ments [61, 63] and therefore a potential barrier to at-tending genetic counselling or testing.

“The woman is meant to do everything, take care ofthe house, take care of this, take care of that, so healthdoes go on the background…That’s how we wereraised. You last, everybody else first”

Hispanic female, Sussner et al. [61]

However, helping others in society [60, 63] and family[35, 52, 60, 61, 63, 66] was cited as an important benefitand motivator for genetic testing across most groups.Some Hispanic participants also felt it was importantthat they act as role models by making health more of apriority and encouraging older women to attend geneticcounselling [61].

“I was the first one diagnosed with breast cancer in myfamily, so I would be concerned about it for their saketo find out what was going on…so that’s what wouldmotivate me, family.”

African American female, Sheppard et al. [60]

Only two studies referred to family support in relationto genetic testing [61, 65]. Ford et al. [65] reported thatsome African American women felt they lacked familysupport to attend genetic counselling for cancer risk dueto the potential negative impact of finding out they werehigh risk. Sussner et al. [61] reported that Hispanic par-ticipants felt family support would motivate them to at-tend genetic counselling. Both groups acknowledgedthat the decision was ultimately theirs; therefore, a lackof family support might not prevent individuals fromhaving genetic counselling or testing.

“[Family] wouldn’t keep me from going. If I wanted togo, I would go”

African American female, Ford et al. [65]

A further issue specific to some Chinese Australians wastheir understanding or definition of ‘close relatives’ [62, 64].These studies highlighted that, due to the importanceplaced on the paternal line, maternal family members mightnot always be considered ‘close relatives.’ Furthermore,when female relatives previously considered close relatives

Hann et al. BMC Public Health (2017) 17:503 Page 24 of 30

marry into other families, they may no longer be consideredas such. Some indicated that relatives would be considered‘close’ depending on how much they interacted with themrather than by bloodline [64]. These issues could lead toomissions in the assessment of cancer family history, result-ing in a less accurate perception of risk.

Service provision and accessSeveral practical issues were highlighted in relation to up-take of cancer genetic testing. Ease of access to serviceswould motivate attendance for genetic testing [60]. Thiscould be achieved by providing services in local communi-ties and during afternoons or weekends [35]. Physicianrecommendation was also an important factor in acces-sing services. Participants in four studies including AfricanAmericans, Hispanics, and Chinese Australians indicatedthat physician recommendation or referral would be amotivator to testing [35, 61, 64, 67], whilst needing yet notreceiving a primary care referral would be a barrier[60, 61, 65, 67].

“The doctor mentioned it during my last visit but hedidn’t do anything about it so I didn’t do anything.”

Hispanic female, Vadaparampil et al. [67]

As the majority of the qualitative studies took placein the US, cost and insurance were often discussed[35, 52, 60, 61, 63, 65–67]. Participants were unsurewhether insurance would cover the costs of testing [67]and were unwilling or unable to pay themselves if testingwas expensive or not covered by their insurance [35]. BothAfrican Americans [65] and Hispanics voiced concernsthat the cost of testing would be a particular barrierwithin their ethnic group due to low wages and nothaving health insurance [66]. Some African Americanparticipants who were affected by cancer indicated thatgenetic testing was too important not to have due to fi-nancial cost [60].

“I think if I had to incur the fees myself, I wouldn’tthink of going…I can’t even imagine having to payout of my pocket for tests.”

African American female, Ford et al. [65]

Language was identified as a barrier to using geneticservices by Hispanics in two studies [61, 66]. Participantswere concerned that poor communication, due also tophysicians’ use of complex medical language, could havebeen a reason for their lack of a referral. However, someindicated that the use of a translator, including familymembers, had been helpful [61].

“But if you are let’s say Spanish and you don’t knowthe terminology or you don’t know, they (the doctors)think the person is ignorant. That’s not the casebecause just because you have a language barrierdoes not make you ignorant.”

Hispanic female, Sussner et al. [61]

Quality assessmentAll studies scored quite highly in the quality assessment,receiving scores of 0.75 or above (range 0.75–1.0, seeTables 1 and 2). [Additional file 3 presents the includedstudies in order of quality with comments on where thestudy failed to meet the quality criteria.] The quantita-tive studies scored well for sufficiently describing thestudy objective, design, method of subject selection, andsample characteristics. Where issues did arise, thesewere mainly due to shortcomings in analytic methods,for example failing to report sufficient estimates of vari-ance, and having missing data that was not sufficientlyacknowledged. Six of the included quantitative studiesinvolved pilot research [36, 38, 46–48, 58]; however, thisdid not necessarily effect the study quality score, forexample if it was stated that the analyses were explora-tory the criteria of needing to have controlled for con-founding was not applicable. The qualitative studiesscored highly for sufficiently describing the study object-ive, design and context. However, none reflected on howthe personal characteristics of the researchers may haveimpacted upon the analysis and results.

DiscussionThe current review supports and adds to the findings ofprevious work by Allford et al. [22], particularly due tothe inclusion of several studies with Hispanic partici-pants. The results highlight that only a small proportionof African American, Hispanic, and Asian ethnic minor-ity groups are aware and knowledgeable about genetictesting for cancer susceptibility, and whilst attitudes arequite positive, concerns and negative perceptions exist.Practical issues are also highlighted as potential barriersto obtaining genetic counselling or testing.Awareness of genetic testing for cancer risk varied

across the reviewed studies; however, as recently as 2014,less than 30% of a general population sample of AfricanAmericans and Hispanics were aware [30]. The reviewalso found some evidence that more White Americans areaware of genetic testing than Asian American, AfricanAmerican, and Hispanics, and this is further supported byresearch which did not primarily aim to investigate ethnicminority groups [68, 69]. Importantly, overall awarenessof genetic testing for cancer risk was low across all ethnicgroups, including White participants, highlighting that

Hann et al. BMC Public Health (2017) 17:503 Page 25 of 30

within the general population it is not a well-known healthservice [29, 30, 32].Ethnic minority groups’ knowledge of genetic risk of

cancer also varied across the studies reviewed, indicatinglow to moderate levels of knowledge. Among samples ofparticipants at high risk for cancer, often less than 50%of knowledge questions were answered correctly. Al-though knowledge about cancer genetics may not relateto intentions to test, individuals who lack understandingabout the hereditary nature of cancer (e.g. that BRCAgene mutations can be passed on by male as well as fe-male relatives) may not pursue genetic testing that isrelevant to them. Low awareness and knowledge wasalso highlighted in qualitative research as a barrier to at-tending genetic counselling or undergoing genetic test-ing, and participants suggested a need for awareness andeducational interventions especially emphasising the im-portance of family history of cancer. Qualitative studiesalso identified several misconceptions about cancer thatcould deter patients from attending cancer genetic ser-vices. However, it is difficult to make generalisationsbased on the results from qualitative research whichmay only represent the views of a few individuals. Fur-thermore, these misconceptions do not appear to beunique to those from ethnic minority groups. For ex-ample, Ford et al. [65] report that White women whodid not attend genetic counselling discussed the beliefthat talking about breast cancer could increase their risk;however, this misconception does not appear to havebeen referred to by African American women in thestudy. A study of White and Hispanic women found thatboth groups held misconceptions, including that con-suming sugar substitutes and bruising from being hitcan cause cancer; but such beliefs were found to be signifi-cantly more prevalent in Hispanic women [70]. Similarly,in a more recent UK study, whilst both White and SouthAsian participants believed that stress causes cancer, sig-nificantly more South Asians held this belief and a smallminority (4.3%) also believed that cancer is contagious, amisconception that no White participants held [71].Personal health benefits and the ability to provide in-

formation about cancer risk to the family were recog-nised as important benefits of genetic susceptibilitytesting. Family support was also discussed as a potentialmotivator to testing for some Hispanics, suggesting thatinterventions encouraging Hispanics to attend cancergenetic services could benefit from involving family.Finally, easy access to genetic services is important to fa-cilitate uptake of genetic counselling/testing, and severalqualitative studies found that a physician recommenda-tion was a motivator for testing. Physician education onthe hereditary basis of some cancers and the importanceof referring people with a family history of cancer forgenetic counselling is also important to ensure thorough

personal risk assessment and that all patients who couldbenefit from testing are offered this.Several negative attitudes and perceptions that might

influence uptake of genetic susceptibility testing werefound to exist among ethnic minority groups, includingreluctance to talk about cancer amongst family, concernsabout stigma, and concerns about the emotional reac-tion of undergoing genetic testing and receiving a highrisk result. Whilst cancer stigma is not unique to ethnicminorities [72], it is unclear to what extent such per-ceived stigma and secrecy varies across different ethnicgroups. Research has also found that cancer stigma var-ies in magnitude depending on the type of cancer [73].As cancer stigma not only has negative consequencesfor patients’ psychological well-being, and can also dis-courage individuals from seeking help from healthcareservices [74], it seems important that efforts are made toreduce stigma to encourage individuals to attend cancergenetic services.Other perceptions and issues identified in this review ap-

pear to be more specific to certain groups. For example,perceptions of ‘close relatives’ among Chinese Australiancommunities could hinder risk assessment based on de-scriptions of family history of cancer, and Hispanicwomen’s culture of prioritising family over their ownhealth could influence their behaviours relating to genetictesting and cancer risk. These various attitudes and percep-tions highlight the importance of identifying the barriersand issues that are specific to different ethnic groups andthe need to tailor interventions to address them.It is particularly important to recognise that historical

experiences of ethnic minority groups in different coun-tries may result in varied attitudes towards healthcare andservices such as genetic testing. There is well documentedmistrust of medical research and the healthcare systemamong some African Americans, influenced, for example,by the Tuskegee Syphilis Study in which African Americanmales with Syphilis were misled by researchers and re-fused treatment in order to study the progression of theillness [75]. Practical issues, including cost and the needfor health insurance to receive testing, and concerns aboutinsurance discrimination as a result of testing are alsomore relevant to some American ethnic minorities. TheGenetic Information Non-discrimination Act (GINA) wassigned into US law in 2008 making it illegal for health in-surers and employers to discriminate against individualson the basis of genetic information and prohibiting in-surers from requiring a person to have testing or to pro-vide genetic information. However, the act is limited as itdoes not cover disability, long-term care, or life insurance.Furthermore, two surveys carried out in 2009/2010 in theUS, one with women at increased risk of hereditarybreast/ovarian cancer [76] and one with family physicians[77], found that over half had not been aware of GINA

Hann et al. BMC Public Health (2017) 17:503 Page 26 of 30

before taking part in the survey. Considering the lackof awareness of GINA, even amongst those that mightbe expected to have an interest in it, and due to thelimitations of the act, it is perhaps unsurprising thatconcerns of discrimination by insurers continues tobe cited as a limitation or barrier to genetic testing inthe US. In addition, several of the studies included inthis review were conducted before GINA was broughtinto law.Genetic testing may identify a gene change whose asso-

ciation with disease is not known, a ‘variant of unknownsignificance’ (VUS). Unlike a pathogenic high risk genechange, the association between a VUS and increased riskof cancer is unclear, leading to issues for providers (coun-selling, risk management and preventative care) [78] andpatients (confusion, psychological impact). It has previ-ously been estimated that approximately 10% of Cauca-sians undergoing BRCA genetic testing receive a VUSresult [79], with a much higher proportion in Hispanics(9–23%) and African Americans (16–24%) [80–82]. Differ-ent prevalence rates of VUS according to ethnic grouplead to differences in the ease of interpretation of resultsbetween groups. That public databases of US gene testingwill have far fewer non-Whites on them than Whites con-tributes to the problem of interpretation. Many VUS innon-Whites will be poorly characterised compared withWhites simply because less data is available on them. Thegreater likelihood of receiving an uninformative VUS re-sult in African ethnic groups might potentially contributeto a lack of understanding about genetic testing or its per-ceived benefits, but our review provides no evidence tosupport this hypothesis.The majority of the reviewed studies were conducted

in the US which limits their generalisability to othercountries, particularly in relation to levels of awarenessand knowledge. Nevertheless, lack of awareness, thetaboo of discussing cancer, and language difficulties,have also been reported in a UK genetics service evalu-ation [83] and a Genetics Alliance UK report involvinginterviews with individuals from ethnic minorities [84].The evaluation of a UK pilot genetic service within aculturally diverse society by Atkin et al. [83] reports thatpoor communication was a barrier for both White andSouth Asian patients; however, communication issueswere most difficult for those whose first language wasnot English and language support was not always viewedpositively. Furthermore, some female patients reportedthat discussing breast cancer with male practitioners wasembarrassing and even felt shameful. The article high-lights the benefit of employing multilingual, culturallysensitive workers within the clinic [83]. In other re-search, cancer fatalism has been found to be higheramongst ethnic minority women in the UK than Whitewomen, whilst cancer fear appears to vary by ethnic

group [85]. Further research into the attitudes and per-ceptions of ethnic minority groups in the UK and otherEuropean countries is needed in order to gain a betterunderstanding of specific cultural barriers to cancer sus-ceptibility testing.The review has a number of limitations including the

omission of intervention studies aiming to increase par-ticipant knowledge of cancer genetics from which wemay have been able to extract baseline data. We did notinclude unpublished literature and our experience ofusing the quality assessment tool, specifically chosen forits ability to assess both qualitative and quantitativestudies, indicated that it lacked a finer discriminatorycapacity. The heterogeneous nature of the measures ofawareness, knowledge, and attitudes used across variousethnic groups and different cancer types in the quantita-tive studies, made a meta-analysis impossible and inter-pretation of results difficult. Furthermore, the majorityof included studies measuring knowledge and attitudesincluded only at risk patients or those already with acancer diagnosis; therefore, results may not representthe knowledge or attitudes of the general population ofethnic minorities. Whilst still in the early stages of con-ception, due to an increasing understanding of cancergenetics and decreases in the cost of genetic testing,population based risk stratified interventions for cancerincluding genetic susceptibility testing are likely to be in-troduced in the future. Such interventions would providepeople with information on their risk of cancer, andscreening or treatment would be recommended basedon their estimated level of risk. Before such interven-tions become a reality it is necessary to gain an under-standing of the attitudes of the wider population,including those who are currently underserved such asethnic minority groups. Meisel et al. [86] found positiveattitudes towards population-based genetic testing andrisk stratified screening for ovarian cancer amongst asample of women from the UK general population.However, just 34% of the sample interviewed were non-White participants and cultural/ethnic differences in at-titudes and perceptions were not discussed in detail.

ConclusionsWidening public participation amongst ethnic minoritygroups in future cancer risk prediction programmes maybe enabled by culturally sensitive knowledge and aware-ness raising interventions that decrease the stigma andtaboo of cancer. For this, further international researchis needed to provide clearer information of ethnic mi-norities’ attitudes, and information and support needsso that cancer risk prediction programmes are inclu-sive and effective in the prevention and early detectionof cancer.

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Additional files

Additional file 1: Review search terms. Full search terms for PsycInfo,CINAHL, Embase and MEDLINE used to find studies for the review.(DOCX 18 kb)

Additional file 2: Study specific measures: Awareness, knowledge, andattitudes. The table presents descriptions of the main measures used toinvestigate awareness, knowledge and attitudes in relation to geneticcounselling/testing. (DOCX 17 kb)

Additional file 3: Rank order of included studies based on qualityassessment. The table presents the quality assessments for each studyand comments on why studies were marked down. (DOCX 19 kb)

AbbreviationsGINA: Genetic Information Non-discrimination Act; UK: United Kingdom;US: United States; VUS: Variant of unknown significance

AcknowledgementsThis work was carried out at UCLH/UCL within the Cancer Theme of theNIHR UCLH/UCL Comprehensive Biomedical Research Centre supported bythe UK Department of Health for the PROMISE study team.

FundingCompletion of this project was funded by the Eve Appeal and CancerResearch (grant code: UKC1005/A12677). The funders had no role in thestudy design; collection, management, analysis, or interpretation of data;writing of the report; or the decision to submit the report for publicationThiswork was supported by.

Availability of data and materialsThe data is included in the manuscript and tables.

Authors’ contributionAL and KH designed the study. LF, JW and SS contributed to the design of thestudy. LS and SG provided design implementation support. KH conducted theliterature search and carried out study selection with BR, MF and AL. KH and MFextracted the data and conducted the quality assessment of studies. KH draftedthe manuscript which all authors critically reviewed and approved. All listedauthors meet the criteria for authorship and no individual meeting thesecriteria has been omitted.

Authors’ informationNot applicable.

Competing interestsThe authors declare that they have no competing interests.

Consent for publicationNot applicable.

Ethics approval and consent to participateNot applicable.

Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims in publishedmaps and institutional affiliations.

Author details1Department of Women’s Cancer, EGA UCL Institute for Women’s Health,University College London, London, UK. 2Department of Behavioural Scienceand Health, Institute of Epidemiology and Health Care, University CollegeLondon, London, UK.

Received: 23 August 2016 Accepted: 7 May 2017

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