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: [email protected] 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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