ORIGINAL RESEARCH

African American Women’s Limited Knowledgeand Experiences with Genetic Counseling for HereditaryBreast Cancer

Vanessa B. Sheppard & Kristi D. Graves &Juleen Christopher & Alejandra Hurtado-de-Mendoza &

Costellia Talley & Karen Patricia Williams

Received: 15 October 2012 /Accepted: 2 October 2013# National Society of Genetic Counselors, Inc. 2013

Abstract Genetic counseling and testing for hereditary breastcancer have the potential benefit of early detection and earlyinterventions in African American women. However, AfricanAmerican women have low use of these services compared toWhite women. We conducted two focus groups with AfricanAmerican women diagnosed with breast cancer (affectedgroup, n =13) and women with at least one first-degree rela-tive with breast/ovarian cancer (unaffected group, n =8). Acontent analysis approach was employed to analyze interviewdata. Breast cancer survivors had more knowledge aboutgenetic counseling and testing than participants who wereunaffected with cancer. However, knowledge about geneticcounseling was limited in both groups. Barriers to pursuing

genetic counseling and testing included poor understanding ofthe genetic counseling and testing process, fear of carrying themutation, concerns about discrimination, and cost. Motivatorsto participate in genetic counseling and testing included desireto help family members, insurance coverage, and potential ofbenefiting the larger African American community. Educationefforts are needed to increase genetic counseling and testingawareness in the African American community.

Keywords Provider . Minority . African Americanwomen .

Genetic counseling and testing . Hereditary breast cancer

Genetic counseling and testing (GC/T) services to detectharmful mutations of BRCA1 and BRCA2 (BRCA1/2)breast-ovarian cancer susceptibility genes have been availablesince 1996 (Lee et al. 2002). However, the use of GC/T varieswidely, with minority women having lower rates of use thanWhite women (Hall and Olopade 2005; Sherman et al. 2013).Approximately 5 % to 10% of hereditary breast cancers in theUnited States are thought to be due to germline mutations,with BRCA1/2 accounting for a significant proportion (Johnet al. 2007; Malone et al. 2006; McClain et al. 2005). Inwomen with a BRCA1/2 mutation, the probability of devel-oping breast cancer is 50 % to 85 %, and ovarian cancer is10 % to 40 % (Narod and Salmena 2011; Thompson andEaston 2002; U.S. Preventive Services Task Force 2005).For each first-degree relative that has breast cancer beforethe age of 50, the risk of breast cancer increases 1.2 fold in awoman with a BRCA1 mutation, and 1.7 fold in a womanwitha BRCA2 mutation (Metcalfe et al. 2010).

Genetic testing and counseling for hereditary breast cancerhave the potential benefit of facilitating early detection andearly interventions. Genetic counseling and testing for muta-tions of the BRCA1/2 genes can provide individuals withinformation about breast and ovarian cancer risk and may

V. B. Sheppard :A. Hurtado-de-MendozaBreast Cancer Program, Lombardi Cancer Center, Department ofOncology, Georgetown University Medical Center, 3300Whitehaven Street, Suite 4100, Washington, DC 20007, USA

K. D. GravesCancer Prevention and Control Program, Lombardi Cancer Center,Department of Oncology, Georgetown University Medical Center,3300 Whitehaven Street, Suite 4100, Washington, DC 20007, USA

J. ChristopherVA Medical Center, Nephrology Section/Medicine Service,One Veterans Drive, Minneapolis, MN 55417, USA

C. TalleyMichigan State University College of Nursing, 515K West Fee,East Lansing, MI 48842, USA

K. P. WilliamsCollege of Medicine, Michigan State University, A-626B East FeeHall, East Lansing, MI 48842, USA

V. B. Sheppard (*)Lombardi Comprehensive Cancer Center, 3300 Whitehaven Street,NW, Suite 4100, Washington, DC 20007, USAe-mail: vls3@georgetown.edu

J Genet CounselDOI 10.1007/s10897-013-9663-6

influence decision making about cancer prevention options(i.e., prophylactic surgery, chemoprevention, risk avoidance),promote screening, and provide information to familymembersto define their risk (Grann et al. 2002;MacNew et al. 2010). Forexample, women with BRCA1/2 mutations who have prophy-lactic mastectomy or pre-menopausal prophylactic oophorec-tomy reduce their risk for breast cancer by 90 % (Rebbecket al. 2004) and 50 % (Rebbeck et al. 2002), respectively.Implementation of risk-reducing surgery reduces mortality inindividuals with BRCA1/2 mutations (Rebbeck et al. 2004).

Hereditary breast cancer is characterized by: (a) early ageof onset ≤50 years of age; (b) having close family membersdiagnosed with the disease or family members with multiplecases of breast cancer and/or both breast and ovarian cancer;(c) a high incidence of contralateral breast cancer in young(≤50 years) Black women; and (d) association with othermalignancies (Metcalfe et al. 2011; Newman et al. 2006). ABRCA mutation affects clinical management, increases thelikelihood of developing contralateral breast cancer and/orovarian cancer, and has implications for therapies (i.e., PARPinhibitors) (Antoniou et al. 2003; Fong et al. 2009; Ihnen et al.2013; Nathanson and Domchek 2011; Tutt et al. 2010).

Despite evidence supporting the clinical utility of GC/T formutations of the BRCA1/2 genes, factors contributing tounderuse GC/T by high-risk African American women arepoorly understood (Halbert et al. 2006). African Americanwomen are less likely than White women to undergo geneticcounseling and testing after controlling for family history ofbreast cancer (Armstrong et al. 2005; Haffty et al. 2006;Honda 2003). Participation in genetic testing is limited amongAfrican American women even after undergoing geneticcounseling (Halbert et al. 2006; Susswein et al. 2008;Thompson et al. 2002). Genetic testing may be especiallyimportant for African American women because of earlierage of diagnosis, higher rates of mortality, and worse progno-sis compared to White women (American Cancer Society2011; Glanz et al. 2003; Simon et al. 2006). Indeed, Johnet al. (2007) found that African American women diagnosedat a younger age had a two-fold higher rate of BRCA1 muta-tions than young White women. In high-risk AfricanAmerican families, BRCA1/2 rates that are similar to thoseof White families have been found. BRCA1/2 mutations prev-alence rates of up to 28 % have been reported in AfricanAmerican women who are at high-risk (Chen et al. 2002;Gao et al. 2000; Nanda et al. 2005).

Reasons for the difference in use of genetic counseling andtesting among African Americans and White women are var-ied, and explanations to date remain inconclusive. Overall, themost consistent predictors of uptake of genetic counseling and/or testing across populations include having a personal orfamily history of breast or ovarian cancer, greater perceivedrisk of developing breast or ovarian cancer, and greater cancer-specific distress (NCI 2013). Explanations for the lower use of

genetic counseling and testing in African American womeninclude: limited knowledge, lower perception of breast cancerrisk, perceived barriers to GC/T, anticipated negative emotionalreactions and stigma concerns (Kinney et al. 2006; Simon andPetrucelli 2009; Thompson and Easton 2002), concerns relatedto cost (Pal et al. 2008), fear of discrimination (Simon andPetrucelli 2009), distrust of the medical community, and con-cerns about exploitation due to carrier status. Further, someresearchers suggest the low rate of GC/T seen in AfricanAmericans may be related to cultural beliefs and values, in-cluding fatalism, temporal orientation, and religious and spiri-tual faith (Meiser et al. 2001; Hughes et al. 2003; Sherman et al.2013). Greater use of spiritual coping has been associated witha perception of lower breast cancer risk (Ma et al. 2008).

Studies examining African American women’s interest ingenetic testing for the cancer susceptibility genes have shownthat there is a high interest, but the actual uptake of testingranges from 26 % to 80 % in those individuals at high risk(Halbert et al. 2006; Ropka et al. 2006). In one study theperception of the benefits of genetic testing was higher inAfrican American women than White women (Hughes et al.1997). Kinney et al. (2001) found that a large percentage ofAfrican American men and women (82 %) who had a familyhistory of breast cancer indicated they intended to participatein genetic testing if it was available. Despite the perceivedbenefits and high interest in genetic testing among AfricanAmerican women, some studies have found that the actualuptake of genetic testing is low. For example, Susswein et al.(2008) reported that the uptake of genetic testing for breastcancer was lower in African American women even whenbarriers such as cost and access were minimized. Lerman andcolleagues (1999) found that low-moderate risk AfricanAmerican women were less likely than Whites to undergogenetic testing after an education-counseling intervention.Despite African American women’s high interest in GC/T,the reasons for their low participation relative to their riskprofile or in comparison to their White counterparts remainunclear.

Purpose of the Study

Descriptive qualitative research may enhance our current un-derstanding of the barriers and motivators for AfricanAmerican women to obtain GC/T and identify potential targetfactors for further research. Barriers and motivators related tothe use of BRCA1/2 genetic counseling and testing will likelyoccur within the socio-cultural context of our health caredelivery system (Sheppard et al. 2013). This study builds uponcurrent knowledge by assessing awareness of and exploringsocio-cultural factors such as values, experiences, and beliefsthat influence African American women’s participation inGC/T. A better understanding of barriers and motivators for

Sheppard et al.

African American women’s participation in GC/T is critical todeveloping effective strategies to improve the use of geneticcounseling and testing in all at-risk populations (Armstronget al. 2005; Halbert et al. 2010). The purpose of this study wasto explore perceived barriers that may limit GC/T participationas well as motivators for participation from the perspective ofAfrican-American women (affected and unaffected withbreast cancer); and to explore the influence of socio-culturalfactors on their decision regarding obtaining or not obtainingGC/T.

Methods

Participants

Purposive sampling was used. Participants were recruit-ed from the greater Washington, D.C. metropolitan areaby word of mouth and/or through fliers disseminated atcommunity activities sponsored by the Capital BreastCare Center (CBCC), African American Public HealthNetwork, and cancer ministries at local churches. Theflyers indicated the opportunity to participate in a focusgroup to gather opinions about genetic counseling andtesting for breast and ovarian cancer. Flyers also includ-ed the eligibility criteria, compensation, and researchteam contact information. Women from prior researchstudies unrelated to GC/T were also invited to partici-pate. Nine participants were recruited from community basedorganizations, three through word of mouth, and nine fromprevious research studies. Criteria for participant eligibilityincluded women who self-identified as African American/Black race, were able to speak and understand English andwere at moderate to high risk for hereditary breast cancer.Women were considered at risk for hereditary breast cancer if(a) they were diagnosed with breast/ovarian cancer at≤50 years of age or at ≥50 years of age with either one firstdegree relative or two second degree relatives with breast and/or ovarian cancer (affected group); or (b) healthy womenwith ≥1 first-degree relative affected by breast and/or ovariancancer (unaffected group). A total of 35 women werecontacted. From those 35 women, 11 did not meet eligibilitycriteria, 3 were lost to follow-up, and 21 women participated inthe focus groups. The sample and focus groups were stratifiedto represent two groups: affected women (n =13) and unaffect-ed women (n =8). All procedures were approved by theMedStar Oncology IRB.

Procedure

Before beginning the focus groups, women consented to bein the study. In November 2008 two trained facilitatorsconducted two focus groups that lasted approximately

2 h at the Martin Luther King Library in the District ofColumbia. The two facilitators had extensive experienceconducting focus groups and they co-lead both focusgroups. Women received a $40 American Express giftcheck for participating.

Instrumentation

Using 18 semi-structured questions (see Appendix), the facil-itator elicited awareness, thoughts, attitudes, and perceptionsabout genetic counseling and testing. Motivators and barrierswere also discussed. We developed questions that tapped intorelevant themes and topics previously identified in the litera-ture (e.g. Thompson et al. 2002). Examples of questionsincluded: Have you ever heard about genetic counseling forbreast and ovarian cancer? What would motivate you to getgenetic counseling for breast and ovarian cancer? What kindsof things would prevent you from getting genetic counselingfor breast and ovarian cancer? The same questions weresubsequently asked for genetic testing. Other specific ques-tions revolved around the role of cultural beliefs includingspirituality in decisions to participate in GCT: How wouldyour spiritual beliefs, if any, play a role in your decision toget genetic counseling and/or testing for breast and ovariancancer/BRCA 1/2? and follow-up questions derived fromparticipants’ replies to the general open-ended questions. Weobtained feedback about the focus group questions from twobreast cancer survivors and from genetic counselors and othermedical providers (Graves et al. 2011) and refined the ques-tions accordingly. All focus groups were audio-taped andtranscribed verbatim by a professional transcriptionist.

Data Analysis

Two of the investigators with experience in qualitative analy-sis (JC and VS) analyzed the transcripts for major themespertaining to motivators and barriers to genetic counselingand genetic testing. NVivo version 8 was used to code, sort,and display data summaries from transcripts. Transcripts werecoded using established methods of qualitative content analy-sis (Pope et al. 2000). The two investigators read the tran-scripts independently in their entirety to identify initial codes.They met to reconcile differences and to develop a codingtaxonomy that included broad categories with exemplar textand definitions to guide the remaining coding of the tran-scripts. These codes were refined in an iterative process thatinvolved a further examination of the data through a constantcomparison process until the coding taxonomy was finalized.The two research members independently coded the data fromthe focus groups by placing key words, phrases or contentareas into the broad categories and met bi-weekly toreconcile differences. Data for each focus group were ana-lyzed separately; however, consistent categories were

Genetic Counseling Limited Knowledge among African American Women

compared between the groups. Disagreements regarding cat-egories led to refinement of codes through consensus of theinvestigators.

Results

Sample Characteristics

Most participants were US born (90 %), currently employed(62 %), not currently married or in a relationship (e.g. di-vorced, widowed, never married) (71%), had completed somecollege or more (86 %), had insurance (95 %) and werebetween 56 and 65 years of age (38 %) (See Table 1). Whileinsurance rates closely align with the African American pop-ulation in the Washington DC area (92 %), the educationalattainment of the sample was higher compared to the DCfemale African American population (52 % completed somecollege or more) (U. S. Census Bureau 2011).

Interview Categories

Several codes emerged from the data and were organized intothe following four categories: (1) Motivators and Barriers toGC/T, (2) Desired Information about GC/T, (3) Women’sAttitudes towards GC/T, and (4) Information Seeking andKnowledge about GC/T. In some instances, identified factorswere both barriers and motivators. In these cases, we provideexamples of both. In general, most participants expressedsome level of familiarity with the concept of genetic testingrelated to breast cancer but fewer women demonstrated anyknowledge or experience regarding what counseling related tobreast cancer mutations would entail. Most examples fromparticipants concerned testing rather than counseling, demon-strating the general lack of awareness and/or knowledge of thegenetic counseling piece. We use GC/T when the commentsare general and pertain to both counseling and testing and GTwhen they specifically relate to testing. Selected quotes ex-emplify the codes in the Results section and additional quotesare presented in Table 2.

Category 1: Motivators and Barriers to GC/T

Motivators Both affected and unaffected participants statedthat the primary motivators to participating in genetic counsel-ing and testing were concern for family members, havinginsurance, and test availability. Affected women named spe-cific family members such as sisters, daughters, nieces, andgranddaughters as primary motivators for getting geneticcounseling and testing. In particular they were interested inreducing their family members’ risk of breast cancer. Oneaffected woman commented:

“I have two daughters and about eight nieces. I was thefirst one diagnosed with breast cancer in my family, so Iwould be concerned about it for their sake to find outwhat was going on…so that’s what would motivate me,family.”

Interestingly, another woman affected with breast cancermentioned that having male relatives would be a strong mo-tivator for her to pursue GT. She highlighted the fact that mostpeople usually do not consider males as being at risk for breastcancer; however, their risk should also be considered as theycould potentially suffer similar outcomes as women. Shestated:

“We keep saying our nieces and granddaughters, but themen in our families need to know too, because they arethe ones that get it [breast cancer] and die…we get it andthey [doctors] find it; prayerfully everyone here had itand they found it, but they [the men] get it and they die.”

Table 1 Demographiccharacteristics of studyparticipants

Demographics N (%)

Age

21–35 4 (19)

36–45 3 (14)

46–55 3 (14)

56–65 8 (38)

65 and older 3 (14)

Insurance

Uninsured 1 (5)

Currently Insured 20 (95)

Income

≤$10 K 1 (5)

$10,001–35 K 1 (5)

$35,001–$60 K 10 (48)

$60,001–$85 K 4 (19)

$85,001–$100 K 2 (9)

>$100 K 3 (14)

Marital Status

Married/Partnered 6(29)

Divorced 6 (29)

Separated 2(9)

Widowed 2(9)

Single/Never Married 5(24)

Education

Completed High School 3(14)

Some College or More 18 (86)

Currently Employed 13(62)

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Benefits of participation in GT to the larger AfricanAmerican community were also discussed. One womancommented: “…[what would motivate me] is the African-American community, period, because…there’s so much re-search being done for others and we seem not to have enoughpeople to participate in these type of things [cancer researchstudies].” One unaffected woman stated:

“if a relative had breast cancer, a close, close, relativethen I would be curious to see if I’m carrying that geneor maybe if I was expecting a child and had it [geneticmutation] I would want to know if I was passing…orlikely to pass it [to my child].”

Insurance coverage of GC/T was very important to bothgroups of women and one unaffected woman commented that“insurance would be a huge motivator in order for me toconsider getting GC/T.” Accessibility of the test was alsoimportant to both groups. For example, both affected andunaffected women stated that they would be motivated tohave GC/T if they had easy access (close location, easytransportation, and parking options) to the counseling andtesting facility. Unaffected women were more concernedabout having to get referrals from their primary care providersfor GC/T. One woman shared that she would be motivated ifGT was “made easily accessible instead of having to get arecommendation or referral from [my] provider.”

Barriers Both affected and unaffected women reported cost,lack of insurance coverage, discrimination, fear of knowingthey had cancer, risk-management decision making, andfamily as primary barriers to not getting GC/T. Lack ofknowledge of hereditary breast and ovarian cancer andBRCA1/2 was a significant barrier to women unaffected withcancer. All of the unaffected women shared that they had noknowledge of genetic counseling or testing for BRCA1/2before participating in the focus group. In contrast, mostaffected women did report knowledge of GC/T but only as aresult of their personal history with cancer. One womancommented, “I heard about it [GC/T] when I was diagnosed,but I didn’t know what it was all about…I just didn’t know.”Although both groups expressed interest in GC/T, oneunaffected woman commented “You would have to come upwith a way to pay for it [GT]…you might really, really want itbut if you don’t have five thousand dollars to pay for this test…that’s gonna prevent you no matter how bad you want it.”Neither group saw the possibility of receiving GC/T withoutadequate coverage, as the test was viewed as being “veryexpensive.”

Both affected and unaffected women mentioned concernsabout discrimination. Interestingly, affected women expressedmore concerns about issues of discrimination related to stigmathan unaffected women. These concerns appeared related to

Table 2 Major Themes and exemplar domains

Motivators to GC/T

Family“I had [GC] counseling when I was diagnosed with breast cancer because

I had had another cancer prior to this breast cancer and I was curious tofind out what was making this happen because the majority of myfamily are women so I wanted to know what was the risk to my niecesand my sisters and great nieces.”

“I wanted to know everything I could possibly know so that I would havea complete package to take back to my nieces and my sisters and tellthem ‘this is what you’d have to be mindful of; these are the things youhave to look for’ because my mom had breast cancer…I had it…I hadsisters and nieces that were grown women that needed to know…[Ididn’t care about the cost] it was like the death of my sisters and mynieces…I didn’t care one way or the other even if I had to mortgage thehouse.”

Insurance“What would motivate me [to get GC/T] is if it were covered byinsurance.”

Affordability“What would motivate me would be the availability of getting these kinds

of tests [locally]…I had one test done [and] only one lab in Californiathat did that test and when I saw what my insurance paid…I just abouthad a stroke…so being able to get something [GC/T] locally at areasonable cost would motivate me.”

Barriers to GC/T

Access“Ohm, after I was diagnosed, my daughter who just turned 31-years-old…she tried to get a mammogram…that’s when I found out aboutthis BRCA1 and 2 and it took tooth and nail fighting with her insurancecompany so that she could get it [GC/T].”

Insurance“See that’s not bad [a co-pay of $2500] for a woman that has insurance but

for a woman that has five kids and taking care of them withoutinsurance that’s another issue; and that’s the thing, you have to have it[insurance].”

Discrimination“the stigma [would stop me from getting tested] because you always have

a concern that somewhere this information is gonna reside on acomputer somewhere; it may prevent you from getting employment,future insurance, or any number of things so that’s [my] concern. Thatis one thing that has stopped me from going ahead with testing.”

“I would never think that a credit report would stop you from gettingemployment and a credit report does so that’s why personally this[getting GC/T] is a concern because all of us know that this informationis gonna be on a computer in someone’s database somewhere so thewhole world can see.”

Family“…my mother [would discourage me from getting GC/T] because she isfrom the old school…those type of things are frightening for her; justmention the word genetic and you don’t have to say anything else…shesees someone messing with your cells…you gonna be a guinea pig orsomebody’s gon give you something and you not gonna know whatthey giving you.”

“They [older generation] don’t always trust these doctors…they thinkyou’re messing with God.”

“…my grandmother is from the islands so she believes in like spirits andall sorts of things…if I did get it [GC/T] and I was positive she wouldgive me tons of teas to drink…from her upbringing they treatedeverything with something they grew in the ground…so shemight not be as objective and would be the first to say, ‘why doyou need this?”

Genetic Counseling Limited Knowledge among African American Women

affected women’s experiences of their own cancer diagnosisand having to deal with other people’s reactions. Specifically,affected women associated participation in GT with possible“stigma” and possible employment discrimination. Accordingto one affected woman, “some employers if they find out youhad something, they’re not gonna hire you for fear that you’llget sick and they are gonna have to pay for it.” Additionally,affected women were concerned that their genetic profileswould be stored on computers and used against them in thefuture.

In general unaffected women reported more fear towardsparticipating in GT than affected women. They expressedmore concerns about learning that theywould carry amutationand could possibly have cancer. According to one unaffectedwoman it was the fear of the unknown that held her back andcommented, “sometimes you just don’t wanna know.” Fear ofdecisions about how to manage increased breast and ovariancancer risk also emerged as a barrier for unaffected women.Many commented that they did not want to have to thinkabout having to make decisions they would need to make iftheir BRCA1/2 test results came back positive. One unaffectedwoman commented, “I keep seeing a lot of breast cancer as oflate, and it’s about having preventive mastectomy…I thinkabout it for myself and I thought, ‘I would not want to thinkabout that’.”

Category 2: Desired Information about GC/T

Unaffected women, being unfamiliar with genetic counselingand genetic testing, shared that they were interested inobtaining information about the reliability of the genetic test’sresults in predicting risk. Additionally, unaffected womenwere interested in knowing whether or not the process ofGC/T required multiple visits, the length of time it would taketo receive test results, if testing was painful, if there werepotential risks involved when participating in testing, whetherit would make them sick, and whether or not they would haveto make the choice of losing their breasts as a result ofparticipating in GT. As one unaffected woman inquired:“Is it one-time testing or is it a series of days or…months.”Affected women desired information regarding test in-terpretation and knowing what to do with their results.They were also interested in knowing specifically howparticipating in GT actually cures or prevents cancer, asone woman noted: “Once you’ve have all the test, what arethe procedures now to stop or fix or heal…that’s gonnaprevent this other disease or whatever it is from comingyour way …you told me I’m a candidate for this, nowwhat?” Both groups were interested in learning about anypotential side effects that would be associated with theirparticipation in GT.

Category 3: Women’s Attitudes towards GC/T

Both affected and unaffected women held positive attitudesabout GT. Some women discussed their attitudes about breastcancer mutations and genetic testing within the context oftheir spirituality or their relationship with God. For example,one woman commented that if she were to learn that she hadthe mutation, this is how she would handle it, “If I get anegative test result…praise Jesus; thank you so much…but ifit is positive all I can say is, ‘God I’m a need ya to hold methrough this’.” Another woman commented, “God was amajor part of my treatment…just having the faith and believ-ing and trusting in God that everything will be alright broughtme through…so if I was to have the mutation, He would do thesame [bring her through].” Thus, overall, women's spiritualbeliefs were not described as barriers to seeking genetic ser-vices but as a potential source of hope and coping. Manyunaffected women shared a desire to participate in GC/T butalso voiced concerns that participation would not be possiblewithout insurance or the ability to cover the costs associatedwith counseling and testing. While affected women were alsoconcerned about costs related to co-pays, most strongly voicedthat participation in GC/T was too important to allow factorssuch as cost or insurance to deter them. As one womancommented, “If I make up in my mind to get it, I woulddefinitely get it…I don’t worry about insurance.”

Category 4: Information Seeking and Knowledgeabout GC/T

Affected women demonstrated more knowledge about GC/Tthan unaffected women. Some of the affected women statedthat they heard about GC/T as a result of either their diagnosisor because of a family member’s diagnosis of breast cancer.Women in both groups stated that they had heard informationabout GT as a result of a national newscaster who shared herbreast cancer experience in the media. A few women also hadlearned about genetic testing and prophylactic mastectomyfrom an actress who had shared her story on television(Christina Applegate). These cases discussed in the mediarepresented the first exposure to GC/T-related informationfor virtually all of these participants (e.g. testing for a breastcancer gene, having a breast removed as a result of testingpositive for the gene). Thus, TV was the main source of GC/Tinformation rather than healthcare providers. The TV gener-ated awareness about GC/T and treatment decisions as we cansee by the comments of one participant (probably referring toRobin Roberts): “she chose voluntarily to have her breastsremoved although she didn’t have cancer.” However, therewas some confusion among participants as to whether or notmastectomies were purely prophylactic. Participants in both

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groups agreed that it would be important to provide womenwith more education about GC/T.

Discussion

This study explored barriers andmotivators to genetic counsel-ing and testing in African-American women both affected andunaffected by breast cancer using focus group methodology.We found that only one woman in our study had received bothgenetic counseling and testing for BRCA1/2 . This finding wasconcerning because study eligibility included moderate-tohigh-risk group of women whowere likely appropriate clinicalcandidates for BRCA1/2 genetic counseling.

Our study findings were striking in participants’ low level ofknowledge about genetic counseling and testing for BRCA1/2mutations. Participants were more familiar with genetic testingservice than they were with the genetic counseling service.Thus, our study supports and expands upon related researchreports of low awareness and knowledge about BRCA1/2mutations in African Americans (Armstrong et al. 2002; Batyet al. 2003; Donovan and Tucker 2000; Hughes et al. 1997;Skinner et al. 2002). Previous studies suggest that low aware-ness and knowledge about BRCA1/2 mutations in AfricanAmericans may influence decision making about geneticcounseling and/or testing (Armstrong et al. 2002; Donovanand Tucker 2000; Hughes et al. 1997). For example,Thompson et al. (2002) found that high-risk AfricanAmerican women with less knowledge about breast cancergenetics rejected both genetic counseling and testing.Although numerous resources exist for providing geneticcounseling and risk education to diverse populations (Halland Olopade 2005), the disconnect appears to be reaching thewomen who would benefit from these empirically-tested riskcounseling and risk communication materials.

Our present results indicate that even though some womenhad heard about GC/T, mainly through TV, there was a lackfamiliarity and knowledge and confusion, especially aboutgenetic counseling—suggesting the need to integrate riskassessment within more routine clinical encounters and toprovide clearer information from diverse sources (e.g.healthcare providers) to understand GC/T and its impact ontreatment decision-making. For example, healthcare providers(oncologists, primary care physicians) who provide care toAfrican American women at risk for carrying a BRCA1/2mutation may not provide the needed recommendations forgenetic counseling, or if they do, may not specifically follow-up to see if referrals resulted in actual appointments withgenetic counselors (Graves et al. 2011).

Uniquely, our results further indicate that referrals and/orrisk counseling interventions would benefit from attention towomen’s personal cancer history as the information needsand perceived barriers to GC/T differed within our sample by

affected status. For instance, affected women, who were morefamiliar with GC/T, desired more information about the inter-pretation of test results and subsequent actions, whereas unaf-fected participants desired more information about the wholeprocess. Exploring different types of information needsamong affected versus unaffected women can be an importantarea for future research to inform targeted efforts to improveknowledge about GC/T among different types of women whowould benefit from GC/T.

We also found differences in the emotional reactions to GC/T, as unaffected participants noted more fear (e.g. possibility ofbeing a mutation carrier, fear of the unknown, fear of having tomake treatment decisions) than affected women. This differencemay be explained by participants’ different degree of exposureto cancer. For affected women, GC/T may be interpreted as onemore step in the cancer survivorship continuum, whereas GC/Tfor unaffected women brings up novel and unfamiliar potentialexperiences (e.g. the possibility of developing cancer). Beyondfear of the unknown with BRCA1/2 , particularly among unaf-fected African American women, other beliefs such as fear ofdiscrimination appear salient for both affected and unaffectedwomen as a potential barrier to accessing GC/T.

We further support prior findings across populations thatwomen fear stigmatization and employment discrimination forbeing mutation carriers (Durfy et al. 1999; Eijzenga et al. 2013;Kinney et al. 2001; Lipkus et al. 1999; Short et al. 2005). Fearof stigma, as well as other anticipated negative emotions (e.g.family related guilt, shame), have been related to lower rates ofparticipation in GC/T (Newman et al. 2006; Thompson et al.2002). However, previous research suggests that once AfricanAmerican women participate in GC/T, cancer-specific worriesand fear are reduced (Ford et al. 2007; Kessler et al. 2005;Lerman et al. 1999). Thus, designing interventions that targetanticipated emotions prior to counseling is warranted.

Both affected and unaffected women related their percep-tions of breast cancer mutations and genetic testing to theirspirituality or their relationship with God. Religion is animportant part of the African American culture and it isused as a coping mechanism for African Americans in thegeneral population and women diagnosed with breast cancer(Banks-Wallace and Parks 2004; Bourjolly 1998; Hendersonet al. 2003). The use of religious coping among AfricanAmerican women at increased risk for having a BRCA1/2mutation is underscored in a study by Weathers et al. (2009)who also found that African American women overall report-ed a high utilization of religious coping strategies. We foundthat women’s spirituality was described as an anchor to helpparticipants deal with a positive result rather than a deterrentto seek counseling and testing because of their faith. Thisfinding supports prior studies that concluded that spiritualbeliefs did not lead African American breast cancer patientsto delay treatment (Sheppard et al. 2011a, b) and Hughes andcolleagues (2003) research that found a trend for women

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endorsing working with God as a copying mechanism beingmore likely to participate in GC/T. Thus, our results are con-trary to other studies that suggest that African Americanwomen’s spiritual beliefs would cause them to delay breastscreening and/or treatment (Gullatte et al. 2010; Hughes et al.2003).

One of the primary motivators for participating in geneticcounseling and testing for affected and unaffected women wasconcern for family members which supports previous research(e.g. Thompson et al. 2002). Thus, understanding the impor-tance of family as a motivator can help shape both publichealth awareness campaigns and development of patient-leveleducation materials related to appropriate use of GC/T amongat-risk women. Family-based education strategies that havebeen employed to improve functional breast cancer literacymay be relevant (Williams et al. 2007). Assisting women tomake connections between their individual risk and the risk oftheir family members may be another way to capitalize onAfrican American women’s motivation to pursue GC/T basedon family needs. Indeed, Lerman et al. (1999) reported thatwhen African Americans were given the opportunity to discussfamily issues and their concerns about being tested, the uptakeof genetic testing was increased, suggesting that AfricanAmerican women may benefit from genetic counseling.Participating in genetic counseling can increase preventionawareness even if testing is not pursued, as Ford and col-leagues’ (2007) qualitative study found that African Americanwomen who participated in genetic counseling expressed self-efficacy in reducing breast cancer risks through lifestyle factors(screening, diet, exercise).

Implications

Genetic providers—particularly genetic counselors—have aunique role in providing risk assessment to African Americanwomen. Increasing physicians’ awareness of referral options togenetic counselors may be useful (Graves et al. 2011). Referralto genetic counselors will provide African American womenwith the needed information to make an informed decisionabout genetic testing and risk management. Our data suggestthe majority of African American women are interested in GC/T participation yet most have not had an opportunity to do so.Strategies to potentially increase health care providers’ referralsto genetic specialists and genetic counselors include: imple-mentation of standard family history collection forms to iden-tify at-risk individuals; development of specialized geneticservices within settings that provide medical services to largenumbers of African American women (Graves et al. 2011); andprovision of potential “talking points” for physicians to usewhen describing the process and benefits of genetic counselingwith patients based on participants indentified motivatorsand concerns. For instance, talking points should include the

potential benefit of GC/T for family members, recognition ofthe importance of spirituality, clarifying the distinction be-tween genetic counseling and testing, and information aboutthe Genetic Information Nondiscrimination Act (GINA) lawto dissipate fear of discrimination. Other strategies geneticcounselors could use to raise awareness include presentationsat support groups of newly diagnosed breast cancer patientswith significant African American membership and thedevelopment of culturally tailored brochures that showintergenerational families. Moreover, given the higher inci-dence of early onset breast cancer among African Americanwomen compared to Caucasian women (American CancerSociety 2009), outreach efforts to groups that provide infor-mation and support to younger breast cancer survivors mayreach African American survivors.

Study Limitations

This study had certain limitations. The lack of knowledge andfamiliarity with genetic counseling prevented us fromdiscussing the differences between women’s perceptions ofgenetic counseling versus testing as most of the commentsrevolved around testing. The small size of the sample and thesmall number of focus groups conducted did not allow usexploring if GC/T perceptions varied among other subgroups(e.g. cancer family history) and did not guarantee that wereached data saturation. Although focus groups constitute anappropriatemethod to gather rich information that emerges fromparticipant’s interactions, social desirability in a group settingand having a large number of participants in one of the focusgroups may have limited participation from some individualsand our possibility of capturing some nuanced responses andparticipant’s individual differences. The volunteer nature of thesample may introduce a sampling bias limiting the study gen-eralizability. Women in our sample were highly educated andwere mostly insured. Although insurance coverage paralleledthose in the DC area, results might not be generalizable to theirless educated and uninsured counterparts in other regions.

Despite the limitations, the present study extends priorfindings by highlighting lack of awareness of genetic counsel-ing as a key barrier to BRCA1/2 GC/T. Our results related tofears and concerns, particularly the differences between af-fected and unaffected African American women, can contrib-ute to our knowledge of specific factors that may be importantto this group (Halbert et al. 2005; Hughes et al. 2003; Kinneyet al. 2001; Suther and Kiros 2009; Thompson et al. 2002).The need for more work focused onAfrican American womenand to identify unique characteristics that may exist withingroups is summarized in a comment from one participant“so much is being done for others but not us,” which pointsto some of the culturally specific aspects associated with GC/Tthat may be at the heart of disparities. As we consider ways to

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ensure that the benefits of technological advances are equitablefor all women, awareness of and referral and access toGC/T in African American women must be considered.

Research Recommendations

Interventions to improve GC/T uptake in African Americanwomen have produced mixed results (Halbert et al. 2010;Kendall et al. 2007; Thompson et al. 2003). Thus, other effortsare needed to test potential explanations of GC/T underuse inAfrican American women and new interventions that tackleaspects that have been understudied such as emotional man-agement (Sherman et al. 2013). A deeper understanding of therole of different anticipated emotions in women’s decisions toundergo GC/T warrants further attention. Future researchshould explore GC/T barriers and limitations in more diversesamples of African American women including women withlower education, no insurance, and different levels ofBRCA1/2risk status. These types of studies could help inform targetedinterventions to improve awareness and use of GC/T services.Future efforts to reduce disparities in breast cancer mortality,particularly in young African Americans, should address dis-parities in GC/T participation (Gonzalez-Angulo et al. 2011).

Conflict of Interest The authors declare that they have no conflict ofinterest.

Appendix. Focus Group Core Questions

Knowledge and Awareness about Genetic CounselingTesting

1. Have you ever heard about genetic counseling and testingfor breast and ovarian cancer or BRCA 1/2 the gene thathas been associated with breast cancer?

2. Have you ever received genetic counseling for breast andovarian cancer/BRCA 1/2? If yes, from where did youreceive genetic counseling? Please describe your experience.

3. Have you ever received genetic testing for breast andovarian cancer/BRCA 1/2? If yes, from where did youreceive genetic testing? Please describe your experience.

4. If you had a choice, where would you prefer to receivegenetic counseling and testing for BRCA 1/2?

Motivators/Barriers about Genetic Counseling Testing

5. What would motivate you to get genetic counseling forbreast and ovarian cancer/BRCA 1/2?

6. What kinds of things would motivate you to get genetictesting for breast and ovarian cancer/BRCA 1/2?

7. What kinds of things would prevent you from getting ge-netic counseling for breast and ovarian cancer/BRCA 1/2?

8. What kinds of things would prevent you from gettinggenetic testing for breast and ovarian cancer/BRCA 1/2?

9. What kind of information would you like to have aboutgenetic testing and counseling for breast and ovariancancer/BRCA 1/2 to feel better informed and would makeyou want to participate in it?

Usefulness of Results, Cultural Beliefs and Self Efficacyassociated with genetic counseling and testing

10. If you decided to participate in genetic counseling andtesting for breast and ovarian cancer/BRCA 1/2, whatwould you do with the information that you learned?Would you know what to do?

11. What would you do if the results were positive? Do youunderstand what that means?

12. What would you do if the results were negative? Do youunderstand what that means?

13. Some women share test results with their family or atrusted friend, with whom would you share your testresults for breast and ovarian cancer/BRCA 1/2 (spouse,extended family, friend—rank according to importance)?

14. How would your spiritual beliefs, if any, play a role inyour decision to get genetic counseling and/or testing forbreast and ovarian cancer/BRCA 1/2?

15. If you were to decide to get genetic counseling and/ortesting for breast and ovarian cancer/BRCA 1/2, can youthink of anyone in your immediate family or a closefriend that might discourage you from getting geneticcounseling and/or testing? If yes, who and what do youthink would be some of their objections?

16. Most people are afraid of the unknown, if you decided toget genetic counseling and testing for breast and ovariancancer/BRCA1/2what types of concernswould you have?

17. Do you feel confident that if you wanted to get geneticcounseling and testing for breast and ovarian cancer youcould go and get it? Please explain.

18. Is it important for you to think of yourself as a person whocan choose whether or not to receive genetic counselingand testing for breast and ovarian cancer/BRCA 1/2?Please explain.

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