Table 2 Quantitative studies summary organised by ethnicity then cancer type

African American

Donovan and Tucker, 2000

[42]

USA

Breast

(n = 220)

49% African American

51% White

Female

59% had a family history of breast/ovarian cancer.

Average age = 41 years

Average 13.5 years education

Median yearly income: $25 k

Groups significantly differed on age and family history of cancer.

Investigated knowledge of breast cancer and breast cancer susceptibility, and perceptions of genetic testing.

Participants were recruited at a clinic and completed a questionnaire on-site.

Knowledge measures were developed by combining items from previously used measures.

• White participants had significantly better knowledge of genetic risk of breast cancer (average score = 7.7 out of 14) than African Americans (average score = 7).

• Breast cancer knowledge accounted for 7% of the variance in genetics knowledge and was the only significant predictor in the multivariate analysis.

• African Americans were more positive about the benefits of testing (average score = 19) than Whites (average score = 18).

• African Americans had more concerns about the limitations and risks of testing (average score = 13) than Whites (average score = 11).

Kinney et al. 2001 [43]

USA

Breast and ovarian

(n = 95)

African American

77% female

Kindred K2099 all with increased risk of cancer based on family history.

Average age = 43 years

60% had at least some college education

83% had health insurance

36% had annual household income ≥$30 k

Investigated knowledge of breast and ovarian cancer susceptibility and attitudes towards genetic testing.

Known kindred participants were invited to take part by letter.

The survey was completed in person (63%) or on the phone (37%).

Included a knowledge measure adapted from the National Health Interview Survey.

• Participants had limited knowledge; average score of 3.2 out of 9 for knowledge about breast and ovarian cancer genetics.

• Over 50% of participants agreed/strongly agreed with all (10) of the benefits of genetic testing.

• Over 50% of participants agreed/strongly agreed with 5 of the 13 limitations and risks of genetic testing.

Kinney et al. 2006 [44]

USA

Breast and ovarian

(n = 105)

African American

68% female

K2099 Kindred pedigree.

4.8% had a personal history of cancer.

45.6% had at least 1 first degree relative with breast/ovarian cancer.

Average age < 40 years

59% had at least some college education

72.4% had health insurance

48% had annual household income ≥$41 k

Investigated predictors of BRCA genetic testing, including knowledge and perceptions.

The survey and baseline interview took place at participants' home or other mutually agreed location.

Participants were offered genetic education, counselling, and testing.

Included a knowledge measure developed from Cancer Genetics Consortium survey.

Also included Powe Fatalism Inventory, Religious Problem-Solving Subscales, Perceptions of Prejudice scale and other measures of cancer worry, psychological status, and social support.

• Cancer genetics knowledge was significantly higher in test acceptors (mean = 7.14) than decliners (mean = 6.11) (maximum score of 10).

• Cancer genetics knowledge, perceived risk of carrying a gene mutation and age over 39 were significantly associated with genetic test acceptance.

• Reasons given for not testing prior to the study:

• Lack of knowledge about the test

• Lack of knowledge about where to go for counselling/testing

• 53% felt that their regular HCP did not have enough knowledge to provide BRCA related services, because they lacked training and education in genetics, or were unaware of BRCA or would refer on.

• Cost was a barrier if they had to pay themselves: 86% would be interested if it cost $15, 49% if $150, and 15% if $1000.

Peters et al. 2004 [33]

USA

Any, breast and ovarian

(n = 351)

48% African American

52% White

63% female

General population

Average age = 41 years

72% had at least some college education [significantly differed between African American (63%) and White (79%)]

Investigated awareness and knowledge of, and attitudes towards genetic testing for cancer risk.

Participants recruited in a Jury selection waiting room.

Questionnaires were completed on-site.

Study specific questions/measures were used.

• Significantly more White (72% & 35%) than African American (49% & 25%) participants had heard of genetic testing and BRCA tests.

• After adjusting for age, gender, and education, African Americans were significantly more likely to report that the government would use testing to label groups as inferior.

• African Americans were significantly less likely to endorse potential health benefits of genetic testing, including that it could help their doctor manage their healthcare, help them change their lifestyle, help prevent cancer, or help scientists to find a cure.

Thompson et al. 2002

[45]

USA

Breast and ovarian

(n = 76)

African American

Female

All with at least 1 first degree relative with cancer.

Average age = 43.4 years

68.4% had at least some college education

36% had annual household income ≥$40 k

Investigated predictors of BRCA testing uptake, including knowledge and perceptions.

Part of a longitudinal study.

Participants were recruited from a community cancer clinic and offered genetic counselling and testing.

Included a breast cancer knowledge measure and a perceived benefits and barriers of BRCA testing measure developed for the study. Also included the intrusive thoughts subscale of IES.

• General breast cancer knowledge; on average participants were correct on 42.5% of the 8 questions.

• Cancer genetics knowledge; on average participants were correct on 45.4% of the 14 questions.

• 6/7 benefits of testing were highly endorsed (≥70%).

• 7/14 barriers were endorsed by ≥50% of the women.

Edwards et al. 2008 [49]

USA

Breast and ovarian

(n = 140)

55.7% African American

44.3% West Indian

Female

69% had personally experienced breast cancer.

Average age = 45.6 years

63% had at least some college education

86% had health insurance

51% had annual household income ≥$35 k

Investigated attitudes toward BRCA testing and association with temporal orientation.

Participants were recruited by physicians and self-referral.

Involved a telephone survey.

A coloured answer card was posted to participants.

Included a previously validated measure of temporal orientation, and a genetic testing pros and cons measure developed for the study from previous research.

• Participants highly endorsed benefits, indicating an overall positive attitude towards genetic testing.

• 91–97% agreed/strongly agreed with pros relating to family.

• 83–91% agreed/strongly agreed with statements indicating that test results would motivate them to carry out cancer surveillance behaviours.

• 70–76% agreed/strongly agreed with positive statements on personal control.

Fewer participants endorsed potential limitations of genetic testing.

• 52% were concerned about the impact testing would have on their family.

• 72% indicated that they would worry about other family members being carriers.

• 75% indicated that they would worry about passing on the gene to their children.

• Only future temporal orientation was positively associated with overall genetic testing pro score.

Hughes et al. 2003 [59]

USA

Breast and ovarian

(n = 28)

African American

Female

Women with 20% probability of having a BRCA gene mutation based on family history of cancer.

Average age ≤ 50 years

61% had some college education

37% had an annual household income of >$50 k

Investigated association between cultural beliefs and uptake of genetic risk assessment and testing.

Participants were recruited through mammography and oncology clinics.

Offered genetic counselling and testing.

Involved a telephone interview and mailed questionnaire.

Included validated measures of communalism, temporal orientation, religious coping style, and cancer fatalism.

• Test acceptors scored higher (mean = 34.8 out of a possible score of 75) for fatalistic beliefs of cancer than those who declined (mean = 25.8).

• No significant differences between acceptors and decliners were found on religious coping style, communalism, or temporal orientation.

Kessler et al. 2005 [50]

USA

Breast and ovarian

(n = 74)

African American

Female

Women with a 5–10% probability of having a BRCA1/2 mutation.

76% had personal history of cancer.

57% had family history of cancer.

Average age ≤ 50 years

72% had at least some college education

53% had an annual household income of >$35 k

Investigated attitudes towards BRCA genetic testing.

Participants were recruited by staff at health clinics and community hospitals, health fairs, breast cancer support groups, and through self-referrals from newspaper adverts.

Involved a telephone interview.

Included the Powe Fatalism Inventory, adapted validated items of perceptions of cancer risk and control, previously validated measures of genetic testing attitudes and intentions.

• Participants endorsed a higher rate of benefits than limitations. Mean pro score was 18.69 and mean con score was 10.05 (out of potential 7–21).

• The most important benefit was cancer prevention, which was rated as very important by 88% of participants.

• The most important limitation was concern about family impact, which was rated as very important by 27% of participants.

• Women diagnosed with cancer and those who perceived a higher risk were more likely to report greater cons of genetic testing.

Sussner et al. 2011 [51]

USA

Breast and ovarian

(n = 160)

African American

Female

64% had personally experienced breast/ovarian cancer.

76% had a family history of cancer.

Average age = 45.3 years

84% had health insurance

71% had more than a high school diploma

71% had an annual income of >$20 k

Investigated influence of ethnic, cultural and racial identity on perceptions of genetic testing for susceptibility to breast/ovarian cancer.

Secondary analysis of data from a previous study in which participants were recruited through physician referral, the women’s own initiation, or community outreach.

Participants were offered genetic counselling and testing.

Involved a telephone interview

Included the Multi-group Ethnic Identity Measure, the Multidimensional

Inventory of Black Identity centrality subscale, the Africentrism scale and previously validated items measuring genetic testing pros, cons, and concerns of abuses.

• Average scores (out of 5, strongly disagree-strongly agree) indicate positive attitudes towards advantages of genetic testing:

• 4.2 for pros of genetic testing

• 4.4 for family related pros

• Average scores (out of 5, strongly disagree-strongly agree) indicate disadvantages/risks of genetic testing are less endorsed:

• 2.4 for cons of genetic testing

• 3.2 for family related cons of genetic testing

• 1.8 for stigma related to genetic testing

• 2.2 for confidentiality concerns relating to genetic testing

• 1.9 for concerns about abuses from genetic testing

Sussner et al. 2009 [56]

USA

Breast

(n = 146)

African American

Female

At risk of BRCA1/2 mutation.

70% personal history of breast/ovarian cancer.

81% with a family history of breast/ovarian cancer.

Average age = 45.8 years

88% had health insurance

67% had more than a high school diploma

67% had an annual income of ≥$20 k

Investigated associations between acculturation and perceptions of genetic testing.

Part of a larger longitudinal study.

Participants were recruited via another study and community outreach

Genetic counselling was provided

Involved a telephone interview.

Included the Impact of Events scale, and a previously validated measure of 5 perceived barriers to genetic testing.

• Foreign-born women of African descent reported more anticipation of negative emotional reactions related to genetic testing for cancer risk than US-born women of African descent.

• Women who had more avoidance symptoms for breast cancer-specific distress reported more anticipation of negative emotional reactions and more confidentiality concerns regarding genetic testing for cancer risk.

Weinrich et al. 2007 [46]

USA

Prostate

(n = 79)

African American

Male

All high risk

48% had personally experienced cancer.

Average age = 54 years

71% had at least some college education

Investigated knowledge of hereditary prostate cancer. (Pilot study)

Participants were recruited from four areas as part of a larger study.

Involved a telephone interview using the Knowledge of Hereditary Prostate Cancer Scale.

• The mean knowledge score was 6.34 out of 9; this was interpreted as low knowledge of hereditary prostate cancer.

• Age was a predictor of knowledge; older (>60) men had more knowledge than younger (<40) men

• Education level did not predict hereditary prostate cancer knowledge.

Weinrich et al. 2002 [55]

USA

Prostate

(n = 320)

African-American

Male

Approximately 45% with some family history of prostate cancer.

Average age = 50–59 years

54.4% had at least some college education

Approximately 40.2% had an annual income ≥$25,021

Investigated predictors of intent to have a genetic prostate cancer susceptibility assessment.

Participants were recruited from two research studies.

Involved quantitative interviews.

Used a study specific survey of intentions to test and why.

• Comments accompanying ‘yes’ responses to interest question included:

• ‘It could help save my life’

• ‘If the test does not affect my health’

• ‘I would like results of test’

• ‘This is the second time I’ve had a prostate (screening test) here’

• ‘Interested in participating in all surveys’

• ‘I am glad to be part of test’

• Comments accompanying ‘no’ responses included:

• ‘Genetics tests may lead to discrimination’

• ‘Too much drawing of blood; tested all the time’

Myers et al. 2000 [54]

USA

Prostate

(n = 413)

African American

Male

General population: 7.5% had a family history of prostate cancer.

Average age ≥ 50 years

46.7% had 12 or more years of education

Investigated variables associated with intention to have a test for prostate cancer risk in the future.

Involved a study specific telephone survey of items based on the Preventative Health Model and intentions to have testing.

• Weak intentions to have prostate cancer risk test were due to:

• Cost (58%)

• Time (52%)

• Worry that others might find out about the test results (47%)

• Belief that test result might be wrong (45%)

• Worry that test result might indicate an increased risk (43%)

• Concern about physical discomfort of testing (42%)

Satia et al. 2006 [37]

USA

Colon

(n = 658)

African Americans

57% female

6% had personally experienced cancer,

9% had a first degree relative with cancer.

Average age = 43.9 years

76% had more than a high school diploma

Investigated attitudes towards genetic testing for colon cancer risk and factors associated with intentions to have testing.

Participants were randomly selected from Department of Motor Vehicle rosters.

Involved a mail, internet, or telephone survey.

Included genetic testing familiarity, intentions, and attitudes questions adapted from previous research.

• Awareness of genetic testing:

• 19.5% of participants had heard/read nothing

• 33.6% had heard/read a little

• 30.9% had heard/read some

• 11.6% had heard/read a lot

• Positive attitudes towards genetic testing for colon cancer:

• 79.1% felt it would give them more control over their lives

• 78.2% said it was good to know future risk of cancer

• Results regarding discrimination were mixed with roughly a third agreeing (32.8%), disagreeing (31.9%) and not being sure (31.3%) that genetic testing could lead to discrimination.

McBride et al. 2005 [58]

USA

Lung

(n = 95)

98% African American

73% female

College students who were not regular smokers but had either never tried smoking or had.

Average age = 19.9

Investigated beliefs about the association between genetics and lung cancer, and interest in a hypothetical test for cancer risk. (Pilot study)

Involved two telephone surveys spaced five months apart.

Used a study specific survey including items on use of cigarettes, susceptibility to smoking and genetic risk, and interest in genetic testing.

• Only perception of being at higher risk of lung cancer from smoking was significantly associated with interest in testing.

Hispanic

Vadaparampil et al. 2006

[34]

USA

Any

(n = 4313)

Hispanic

56.9% female

General population

2.5% had personally experienced cancer.

16.5% had parents with cancer.

Average age = 25–39 years

29% had at least some college education

66.6% had health insurance

Investigated awareness of genetic testing for cancer risk and the influence of acculturation.

Uses data taken from the National Health Interview Survey, which used stratified sampling to oversample African Americans and Hispanics.

Involed an in-person computer-assisted household interview.

• 20% had heard of genetic tests for increased cancer risk.

• Awareness varied by sub-ethnic group, Puerto Ricans were most aware (27.3%) and Mexicans were least aware (14.3%).

• 34.8% of those with a high level of English language preference had heard of tests, compared with 18.5% with an intermediate level and 9.5% with a low level of English language preference.

• Awareness was twice as high among those born in the US than those born in another country.

• Lower test awareness was associated with decreasing educational level; those who only completed high school or did not complete high school were less likely to be aware of genetic testing than those with a college education.

• Test awareness was inversely associated with not engaging in physical activity and perceiving low or intermediate cancer occurrence in the family.

Heck et al. 2008 [28]

USA

Any

(n = 10,883)

Hispanic

Male & female

General population: 24.2% report family history of cancer.

Average age ≥ 50 years

Investigated awareness of genetic testing for cancer risk and the influence of acculturation.

Used data from the National Health Interview Survey 2000 and 2005.

Interviews were carried out in participants’ homes.

• 17.9% of Hispanics indicated they had heard of genetic testing.

• 7.7% of participants who only spoke Spanish were aware of genetic testing for cancer risk

• Puerto Ricans and other Spanish had higher awareness than Mexicans/Mexican-Americans

• Awareness was associated with greater use of English and length of stay in the US

• Awareness was also associated with healthcare visit in past 12 months, greater educational attainment, and residence in the Midwest.

Sussner et al. 2009 [39]

USA

Any

(n = 103)

Hispanic

Female

70% had personally experienced cancer.

81% had a family history of cancer.

Average age = 45.19 years

27.2% had more than a high school diploma

79.8% had health insurance

12.9% had an annual income ≥$20 k

Investigated the influence of acculturation on attitudes, beliefs and familiarity with genetic testing for cancer risk.

Secondary analysis of previously collected data.

Involved an interviewer-administered survey completed at the recruitment site (70%) or via telephone (30%).

Included the Group-Based Medical Mistrust Scale, and measures of acculturation, familiarity of genetic testing for cancer risk, and perceived benefits, barriers and concerns of abuses.

• Mean genetic testing awareness score was 7.4 out of 16.

• With increasing acculturation Hispanics were more familiar with genetic testing for cancer risk.

• Mean score for perceived benefits of genetic testing was 24.8 out of 30.

• With increasing acculturation and decreasing medical mistrust, Hispanics were more likely to cite perceived benefits related to genetic testing for cancer risk.

• Mean score for perceived barriers to genetic testing was 29.7 out of 55.

• With decreasing acculturation and increasing medical mistrust, Hispanics were more likely to cite perceived barriers to genetic testing for cancer risk.

• Mean score for concerns of abuses was 11.3 out of 25.

• With increasing medical mistrust and age, Hispanics were more likely to cite concerns about abuses of genetic testing for cancer risk.

Vadaparampil et al. 2010

[48]

USA

Breast and ovarian

(n = 53)

Hispanic

Female

All high risk for cancer.

25% had personal experience of breast/ovarian cancer.

64.6% had a first degree relative with breast cancer.

56.8% had a first degree relative with ovarian cancer.

Average age = 35–44 years

52.9% had at least some college education

57% had health insurance

52.8% had an annual income >$20 k

Investigated knowledge of hereditary breast/ovarian cancer. (Pilot study)

Participants were recruited from clinics, support groups, health fairs, food pantries, using flyers and media press release etc.

Interviewed in person at a venue selected by the participants.

Acculturation measures taken from National Health Interview and knowledge measure developed by NCHGR Cancer Genetic Studies Consortium.

• Approximately half of the hereditary breast cancer questions were answered correctly, mean score of 5.15 out of 11.

• Those with personal breast cancer had less knowledge than those without breast cancer.

Gammon et al. 2011 [27]

USA

Breast and ovarian

(n = 147)

42.9% Hispanic

57.1% White

Female

All high risk or cancer survivors.

18.4% had prior hereditary breast cancer counselling and genetic testing.

Average age = 54.5 years

68% had more than a high school diploma

78.5% had an annual household income ≥$30 k

95.1% had health insurance

Groups significantly differed on personal history of cancer

Investigated awareness and attitudes in relation to BRCA genetic counselling and testing.

Participants were recruited through the National Cancer Institute’s Cancer Genetics Network by mailed letters.

Involved a computer-assisted telephone interview.

Study specific questions/measures were used.

• 43.1% of Hispanic women and 65.2% of White women were aware of BRCA1/2 testing.

Hispanic responses to open ended questions:

• Benefits of BRCA1/2 testing: being able to tell family members such as daughters about test result (37.7%); would enhance prevention (31.1%); personal knowledge and awareness of risk (17.0%). Just 1.9% referred to making healthy lifestyle changes and 2.8% said for peace of mind.

• Limitations: potential emotional distress (55.3%) and concern of opting for unnecessary treatment (10.5%).

• Barriers: Fear (36.8) and cost (32.4%) were the most commonly sighted barriers to genetic testing, followed by availability (14.7%) and lack of awareness (13.2%).

• Only 1 Hispanic woman sited “cultural barriers” as a barrier to genetic testing

Ramirez et al. 2006 [36]

USA

Breast

(n = 48)

Hispanic

67% female

No personal history of breast cancer but had a family member with breast cancer (spouse, daughter, sister, mother, aunt, first cousin).

Average age = 44 years

42% had at least some college education

81% had health insurance

56% had an annual household income >$25 k

Investigated awareness, interest, and perceptions of genetic testing for breast cancer risk. (Pilot study)

Patients at cancer clinics, organisations and support groups were provided with information to pass on to family, those interested in participating contacted the researchers.

Involved structured interviews conducted in English or Spanish.

Used validated measures taken from previous research.

• Awareness of breast cancer genetic testing:

• 56% had heard/read almost nothing

• 27% had heard/read relatively little

• 17% had heard/read a fair amount/a lot

• Benefits were perceived as significantly greater than the risks/limitations

• Perceived benefits of breast cancer genetic testing:

• 66% (strongly) agreed they could plan for the future

• 21% (strongly) agreed they could make decisions about getting married

• 76% said learning if their children are at risk

• 81% said to take to take better care of themselves

• 83% said to get screening tests more often

• Perceived risks/limitations:

• 31% were concerned about their emotional reaction

• 20% were concerned about their partner’s reaction

• 31% were concerned about their family’s reaction

• 15% felt unsure that the test is accurate

• 26% would worry about how it would affect their insurance

Sussner et al. 2010 [38]

USA

Breast and ovarian

(n = 15)

Hispanic

Female

All high risk or experienced cancer.

40% had personally experienced cancer.

55.5% had a family history of cancer.

Average age = 53.4 years

60% had at least a high school diploma

100% had health insurance

40% had an annual income ≥$20 k

Investigated interest and beliefs about genetic counselling for breast and ovarian cancer. (Pilot study)

Participants were recruited from breast surgery clinics.

Phase 1 involved telephone interviews.

Used Group-Based Medical Mistrust Scale, measures of genetic counselling intentions, awareness, attitudes, and behavioural beliefs.

Phase 1 results:

• The mean awareness score was 9.9 (scale 4–16).

• Participants reported largely positive attitudes about genetic counselling for breast cancer risk (mean = 33.1, on 8–40 scale).

• Behavioural beliefs score was high (mean = 63.5, on 15–75 scale), indicating more positive beliefs.

• Benefits of BRCA genetic counselling:

• 100% agreed/strongly agreed it would help them initiate discussions with family members about cancer.

• 93.3% agreed/strongly agreed it would reduce fear and concerns about developing or having a recurrence of breast cancer for themselves.

• Barriers to BRCA genetic counselling:

• 73.3 agreed/strongly agreed genetic counselling could jeopardize health insurance.

• 53.3% agreed/strongly agreed genetic counselling would cause them to worry about the cancer risk of family members.

• 40% agreed/strongly agreed talking to a genetic counsellor would cause distress.

Sussner et al. 2013 [41]

USA

Breast and ovarian

(n = 120)

Hispanic

Female

All high risk or experienced cancer.

58.3% had personally experienced cancer.

46.7% had a family history of cancer.

Average age = 47.5

49.2% had more than a high school diploma

88.7% had health insurance

56.4% had an annual household income ≥$20 k

Investigated facilitators and barriers of BRCA genetic counselling.

Participants were recruited at a clinic.

Involved a telephone interview.

Included 5 measures of acculturation, the Group-based Medical Mistrust Scale, perceived risk of BRCA1/2 mutation, awareness of genetic counselling for cancer risk and measures of attitudes and beliefs of BRCA genetic counselling. (Most measures previously developed by the team).

• Awareness of genetic counselling average score = 9.1 (possible range of 4–16)

• Heard/read about genetic counselling for breast/ovarian cancer risk, mean = 2.1 (possible range of 1–5)

• Knowledge about genetic counselling, sample mean = 43.8 (possible range of 11–55)

• Competing life concerns was the strongest predictor of intentions to make a genetic counselling appointment. Other significant predictors included perceived risk of carrying a BRCA mutation and having a physician referral for genetic counselling

Vadaparampil et al. 2011 [47]

USA

Breast and ovarian

(n = 45)

Hispanic (Puerto Ricans from Tampa and Puerto Rico)

Female

High risk or experienced cancer.

44.5% had personally experienced cancer.

31.1% had a family history of breast cancer.

4.4% had a family history of ovarian cancer.

Average age = 31–50 years

62.2% had at least some college education

55.6% had an annual income >$20 k

Investigated knowledge, interest and attitudes toward genetic testing for hereditary breast and ovarian cancer.

(Pilot study)

Participants were recruited through community-based outreach methods and distribution of flyers.

The study involved in-depth face-to-face interviews and structured quantitative surveys, but this article focusses just on the quantitative survey data.

Included Powe Fatalism Inventory, a Familism scale and previously validated measures of hereditary cancer knowledge and attitudes towards genetic testing.

• The average score for hereditary breast/ovarian cancer knowledge was 5.07 (out of 11).

• Those with less than a high school education were significantly less knowledgeable about hereditary breast/ovarian cancer than those who graduated, and those who had had a diagnosis of breast cancer before age 50 were more knowledgeable than those without a diagnosis.

• More participants reported that they strongly agreed/agreed with the positive attitudinal items (facilitators) compared to the negative attitudinal items (barriers), although this was not statistically significant.

• The most commonly endorsed facilitator for genetic testing was a healthcare provider recommendation (100% Puerto Rico, 90% Tampa).

• The most commonly endorsed barrier was that it might cost too much (32% Puerto Rico, 40% Tampa).

Multiple groups

Honda 2003

[29]

USA

Any

(n = 31,886)

66% White

14% African American

16.6% Hispanic

3.5% Other

52.1% female

General population: 9.8% report high risk of cancer.

Average age = 30–49 years

51.5% had at least some college education

84.7% had health insurance

75.3% had a family annual income >$20 k

The groups significantly differed on income, education and health insurance coverage.

Investigated awareness of genetic testing for cancer risk.

Used data from the National Health Interview Survey 2000.

Survey carried out in participants’ homes.

• Awareness of genetic testing for cancer risk by ethnicity:

• 47.2% of White

• 30.9% of African American

• 19.1% of Hispanic

• 30.5% of other

• Awareness was significantly associated with race, education, immigration status, interpersonal exchange with a health care professional in past 12 months, and self-rated health status.

• African American, Hispanic, and other ethnic groups were significantly less aware of genetic testing for cancer risk than Whites.

Huang et al. 2014 [30]

USA

Any

(n = 3432)

84.8% White

6.9% Hispanic

8.3% African American

61% female

General population of adult internet users.

Average age = 50–60 years

81% had at least some college education

78.7% had an annual income ≥$35 k

The groups significantly differed on age, education and income.

Investigated awareness of genetic testing for cancer risk amongst internet users.

Used data taken from the National Cancer Institute’s HINTS survey.

Involved a telephone or postal survey

• Significantly more White participants were aware of genetic testing for cancer risk (38.9%) than African American (29%) and Hispanic (27.9%) participants.

• Difference in awareness between Whites and Hispanics was found to be explained by having heard of clinical trials and Centres of Disease Control, age, education, fatalism, information seeking, and discussing online information with a doctor.

• Difference in awareness between Whites and African Americans was found to be explained by trust in information from religious organisations, having heard of clinical trials and Centres of Disease Control, education, living region, age, information seeking, fatalism.

• Fatalistic beliefs - Hispanics (31.6%) were more likely to believe that “prevention of cancer is not possible” than African Americans (22.9%) and Whites (17.7%).

Pagan et al. 2009 [32]

USA

Any

(n = 25,364)

66.3% White

17.6% Hispanic

13.0% African American

2.8% Asian

51% female

General population

Average age Whites ≥60

Average age others = 18–29 years

Investigated awareness of genetic testing for cancer risk.

Used data taken from National Health Interview Survey 2005.

Involved a computer-assisted interview at the participants’ home.

Study specific questions/measures were used.

• Awareness of genetic testing for cancer risk:

• 48.2% of Whites

• 19.0% of Hispanics

• 30.8% of African Americans

• 27.7% of Asians

• Difference in awareness between White and Hispanic participants was found to be explained in part by nativity/length of residency and education.

• Difference in awareness between White and African American participants was found to be explained in part by education and region of the US.

• Difference in awareness between White and Asian Americans was found to be explained in part by nativity/length of residency.

Thompson et al. 2003 [40]

USA

Any

(n = 273)

42% African American

40% Hispanic

18% White

Female

30% had at least one first degree relative with cancer.

Average age = 46.1 years

48% had more than a high school diploma

89% had health insurance

45% had an annual household income ≥$20 k

The groups significantly differed on income, education and health insurance coverage

Investigated negative perceptions of genetic testing for cancer risk, awareness of genetic testing, and medical mistrust.

Participants were recruited through hospitals and community health care centres.

Survey completed at the recruitment site or over the phone.

Used the Group Based Medical Mistrust Scale, measures of awareness of genetic testing and concerns of abuses developed for the study, and a measure of perceived disadvantages of genetic testing for cancer risk based on previous research.

• Participants who had heard almost nothing/relatively little about genetic testing for cancer:

• 50% White

• 63.5% African American

• 75.2% Hispanic

• Hispanic women were significantly more likely to have reported a low level of awareness of genetic testing for cancer risk.

• African Americans (mean = 29.2) and Hispanics (mean = 27.3) had significantly higher medical mistrust scores out of 60 than White (mean = 19.4).

• After controlling for significant covariates there were no significant differences between ethnic groups on genetic testing disadvantages.

• After controlling for covariates African Americans were found to more strongly agree with concerns of abuses compared to White participants.

• African Americans and Hispanics were more likely to agree that testing will be used to show their ethnic group is not as good as others, to interfere with the way God intended people to be, and interfere with the natural order of life. African Americans were more likely to believe that genetic testing allows doctors to play God than White participants.

Armstrong et al. 2012

[57]

USA

Any

(n = 337)

62.0% White

38.0% African American

63.5% female

General population

Average age = 50–59 years

57.6% had at least some college education

85.5% had health insurance

72.2% had an annual household income ≥$20 k

The groups significantly differed on age, education and income.

Investigated interest in genetic testing for cancer risk under different hypothetical scenarios and healthcare system distrust.

Participants were recruited through random digit dialling.

Involved a telephone survey.

Included a conjoint scenarios measure developed for the study and the Revised Measures of Health Care System Distrust Scale.

• Willingness to have genetic testing for cancer risk did not significantly differ between African Americans and White participants across several hypothetical scenarios.

• Significantly more African Americans (26.6%) had high distrust of the health care system than Whites (17.2%).

• African Americans had significantly higher healthcare mistrust scores on the values subscale (median = 16.4) compared to Whites (median = 15.4).

Kaplan et al. 2006 [31]

USA

Breast

(n = 1711)

40% White

21% Asian American

19% African American

19% Hispanic

Female

Mammogram users with no personal history of breast cancer or abnormalities in most recent mammograms.

32.2% at high risk of cancer.

Average age = 54.4 years

78.2% had college degree or higher

95.8% had health insurance

The groups significantly differed on age, education, health insurance coverage.

Investigated awareness of cancer risk reduction therapies including genetic testing for breast cancer risk.

Participants were recruited from mammography facilities.

Involved telephone interviews using study specific questions/measures.

• Participants who had heard of genetic testing for breast cancer risk:

• 59.4% of Whites

• 31.0% of African Americans

• 26.1% of Asian-Americans

• 19.4% of Hispanics

• Significantly more White participants had heard of genetic testing for breast cancer risk.

Armstrong et al. 2005 [53]

USA

Breast and ovarian

(n = 408)

Cases i.e. attended genetic counselling (n = 217)

Controls i.e. did not attend genetic counselling (n = 191)

76.0% White

17.4% African American

3.2% Asian American

2.5% Other

1.0% Hispanic

Female

All with a first or second degree relative diagnosed with breast/ovarian cancer.

Average age cases = 42.5 years, controls = 53.1 years

Approximately 78.4% had at least some college education

Approximately 98.3% had health insurance

Approximately 66.6% had an annual household income ≥$30 k

Investigated factors associated with uptake of BRCA genetic counselling, including attitudes about genetic testing.

Participants were recruited through billing databases.

Involved a posted questionnaire.

Included a previously validated measure of cancer worry and measures of cancer risk perception, attitudes towards genetic testing, primary care visits, and discussion of BRCA1/2 testing.

• White women were significantly more likely to have attended genetic counselling for BRCA than African American women, even after controlling for the probability of a BRCA1/2 mutation, socioeconomic factors, perceptions of cancer risk, attitudes, and discussion of testing with a primary care physician.

• Use of genetic counselling was positively associated with probability of BRCA1/2 mutation, younger age, higher breast cancer risk perception, higher ovarian cancer worry, and attitudes about discrimination and reassurance from testing.

• 126/310 White, 16/71 African American, 7/13 Asian American, 0/4 Hispanic, and 10 ‘other’ participants attended testing

• Of the 55 African Americans that did not have genetic testing:

• 4.1% agreed testing could lead to discrimination.

• 28.0% agreed that testing creates anxiety.

• 42.0% agreed that testing provides reassurance.

• 64.6% agreed that testing provides information.