Proposal:Breast Cancer in Hispanic Populations

Karen Reifenstein, PhD, RN, Matt Asare, PhD, MPH, MBA, CHES,

and Sandra M illon-Underwood, PhD, RN, FA AN

Abstract: Lack o f adequate participation by African American and Hispanic zoomen in breast can­ cer genetic research studies sustains a knowledge gap in our understanding o f new and innovative scientific advances and outcomes in breast cancer research/genomics. The purpose o f this study is to suggest strategies to increase African American and Hispanic women's participation in breast cancer genetic research. A review o f literature reveals that historical, com m unity involvement, cultural, discrimination/stigmatizations concerns, and economic factors may impact participation in breast cancer genetic research investigations. Future research investigations should involve members o f the minority com munity as recruiters, acknowledge anticipated historical concerns up-front, address anticipated concerns o f discrimination/stigmatizations, and recognize and respect a person's culture and try to work within it when attempting to recruit minority women for breast cancer genetic research.

Key Words: African-American Women, Hispanic Women, Breast Cancer Genetic Research, Participation, Strategies

W omen a n d B reast C ancer R esearch Introduction

Significant differences exist in breast cancer (BC) incidence a n d m o rta lity rate s b e tw e en A frican American, Hispanic, and Caucasian w om en (CW). W hile the incidence of BC for African Am erican wom en (AAW) is not higher com pared to CW, the incidence rate for AAW is higher than H ispanic w om en (HW) from the m ost recent data available (2016), 132.7 per 100,000 com pared to 128.2 per 100,000 (H ow lader et al., 2019). Notably, while BC m ortality for CW had a substantial decline from 1975-2016 (decreasing from 31.8 per 100,000 to 19.6 per 100, 000), AAW's BC m ortality rates changed little during this same period (29.5 per 100,000 compared to 27.3 per 100,000) (H ow lader et al., 2019). For HW, BC m ortality declined significantly from 2000-2016, decreas­ ing from 16.8 p e r 100,000 to 13.9 p e r 100,000 (H ow lader et al., 2019).

Breast cancer genetic research can offer potential health benefits to m any w om en. More targeted and in­ dividualized treatm ent approaches m ay be obtained as a result of new and innovative scientific advances in BC research/genom ics (Lee & Naiem, 2012). Furtherm ore, some BC racial disparities (e.g., m ortality rates), m ay be further reduced as a result of current genetic research.

Karen R eifenstein, PhD, RN, corresponding author, University o f Rochester, School o f Nursing. The author may be reached at: [email protected]. Matt Asare, PhD, MPH, MBA, CHES, Department of Public Health, Robbins College o f Health and Human Sci­ ences, Baylor University, [email protected]. Sandra M illon-Underwood, PhD, RN, FAAN, University of Wisconsin-Milwaukee, College o f N ursing, underwoo@ uwm.edu.

However, in order to take advantage of potential m edi­ cal/genetic benefits, individuals from under-represented groups m ust participate in BC genetic research. Some investigators report that there is a contentious a nd com­ plicated association betw een the concepts of ethnicity and race and genomics (Lee & Naeim, 2012). The form ation of large biological sample collections that have been used to study the role of genetics in various diseases has in­ creased debates regarding the potential im pact of genetic research on vulnerable ethnic and racial groups. One aspect of these debates includes individuals w ho have expressed concerns related to the discriminatory potential of genetic research/ genetic testing. Another aspect relates to individuals w ho are concerned that benefits of genetic research will not be distributed equitably if vulnerable groups do not participate in biobanks because of w or­ ries about possible discrim ination (Goldenberg, Hull, Wilford, & Sharp, 2011; Lee & Naeim, 2012). Concerns of discrim ination was also found by other investigators w ho w anted to assess AAW's perceptions and aw are­ ness of counseling and testing for BRCA 1 /2 (Adams, Chrisotopher, Williams, & Sheppard, 2015). Suther and Kiros (2009) pointed out that concerns regarding possible stigm atization, discrim ination, and privacy breaches, m ay cause individuals to avoid participation in research and genetic related services.

Clinical trials (CT) offer potential significant benefits to a variety of patients including m inority w om en diag­ nosed w ith BC. Reifenstein and Asare (2018) previously reported that both w om en and m inorities have been u n ­ derrepresented in CTs, and this underrepresentation has perpetuated health disparities in racial / ethnic minorities and continues to w iden the chasm betw een racial/ethnic m inorities and the majority population. C om padre et al. (2018) also noted that AAW are underrepresented in cancer genetic research.

Journal of Cultural Diversity • Vol. 26, No.3 Fall 2019

Search Strategy A structured approach was used to docum ent the

search strategy for this research review. A comprehensive review of PsychoINFO, Cochrane Library, PubMed, Ovid Medline, and CINAHL databases was conducted and the review period is published studies between 2006 and 2018. Key words used to identify articles included AAW, AAs, BC genetic research, cancer genetic research participation, BC clinical trials, Latina women (LW), Latinos, BC genetic research participation, and lack of participation. Articles were narrowed down by reading the titles. Those titles which did not relate to BC genetic research participation were dropped. Abstracts of the articles were read and the following inclusion criteria were used in making the final selection of articles. Inclusion criteria were: (1) only published articles in refereed journals; (2) studies reported in English; (3) studies conducted in the United States (4) studies that were related to BC genetic research; (5) m ul­ timedia (Twitter; Facebook-publicly available posts) for discussions related to BC genetic research participation (6) studies that published the final results and not merely baseline results or descriptions, and (7) had a study popula­ tion of adults (older than 18 years). All those studies that did not meet the listed criteria were excluded from review.

Participation in Clinical Research Involving underrepresented and underserved popu­

lations in research such as genetic research and CTs is needed to make improvements in cancer treatment and risk reduction strategies (Quinn, Mcintyre, & Vadaparalmpil, 2011). This is indeed a significant challenge as less than 2 percent of cancer studies funded by the National Institutes of Flealth (NIH) include enough minority participants to meet their own goals (Fluff, 2016). Unfortunately, minor­ ity participation in CTs has historically been quite limited. Most recently, a review of National Cancer Institute (NCI) sponsored or co-sponsored CTs during the month of Janu­ ary, 2013 indicated that AA's and Flispanics each had the lowest CT participation at 1.3% (Chen, Lara, Dang, Pater- niti, & Kelly, 2014 ). This is indeed very concerning, as 2013 census data showed Caucasians comprising nearly 63% of the population w ith AA's at 13% and Flispanics at 17% http: / / www.indexmundi.com/facts / united-states / quick-facts/ all-states/w h i te-not-hispanic-population- percentage#map. In 2016, only about 3% of genetic re­ search participants were of African and Fhspanic descent and were even less represented at only 0.54% (Popejoy & Fullerton, 2016). Despite these very low participation rates, some authors insist that AAs and Flispanics are interested in participating in clinical research (George, Duran, & Norris, 2014; http ://k h n .o rg /n ew s/latin o s-left-o u t-o f- clinical-trials-and-possible-cures /) and in genetic research (Sanderson, et al, 2013; Smith et al., 2018, Chalela, Munoz, Kipling, Kakalamani, & Ramirez, 2018, Sheppard et al., 2018; John, Sangaramoorthy, Koo, Whittemore & West, 2019). However, their willingness to participate may be untapped as some researchers have pointed out that minor­ ity individuals are not given an invitation to participate in CTs even when the disease being investigated primarily affect the minority population (h ttp s://s p h .u m d .e d u / sites / default / files / files / http_www_hormone_org_Pub- lic_clinical_trials_content_loader.pdf).

Factors in M aking a D ecision to Participate in Breast Cancer Genetic Research

Given the increased attention on health disparities and genetics, it is imperative to include AA and HW in research that examines how individuals decide to participate in BC genetic research. Genetic research presents itself in a sociopolitical context, which may ultimately affect how minorities understand this information and affect their willingness to participate in research related to genetics (White, Koehly, Omogbehin & McBride, 2010).

Very lim ited studies have been conducted in this research area (Lee & Naeim, 2012; Underwood, Busch, Kelber, Stevens, & Townsend, 2013). Most of the research that was uncovered focused on inherited BC susceptibil­ ity and genetic testing for this susceptibility in non-Latino Caucasians (Yeomans -Kinney, Gammon, Coxworth, Simonsen, & Maritza, 2011). When related research was found, information about individual ethnic groups was unable to be determined because the number of subjects were too small (Streicher et. al., 2011), or the data was presented only in an aggregate narrative form at that did not specify if the respondent was male or female, or Latina, or AA (Sanderson, et al., 2013). Efforts to capture conversations regarding BC genetic research participation on multi-media platforms (e.g., Twitter - publicly available posts) from AA and FTW were challenging. Ponce, Glenn, Shimkhada, Scheitier, and Ko (2017), also reported chal­ lenges locating high-volume discussions on BC barriers on Facebook and Twitter in their work related to challenges and barriers to BC care in California. They believed that these conversations/discussions were likely occurring in non-publicly accessible social media platforms and chat sites, or privately in Facebook groups. This author agrees with the aforementioned assessment of limited discussions found on social media.

Using hashtags such as #breastcancergenetics and #breastcancer on Twitter (publicly available posts) this investigator also found limited relevant results similar to Ponce and colleagues (Ponce, et al., 2017). However, Twit­ ter chats and BLOGS were found on the Living Beyond Breast Cancer website (h tt p ://w w w .lbbc.org/). Some of the information found on Twitter chat within tJus website was coping with BC related fatigue and insomnia, breast reconstruction, and communicating with your children regarding BC. However, in a BLOG story (http: / /www. lbbc.org/n o d e /6470) on this website, information from a woman of unknown ethnic background who participated in a HER2 targeted clinical trial was shared. She reported a few concerns (e.g., experimentation) about participating in the CT. Such concerns were expressed as "...but I felt like I would be a guinea pig and that the hospital and the pharmaceutical company w ouldn't have my best inter­ ests at heart" (http://w w w .lbbc.org/node/6470). These concerns are similar to those reported by AAW and LW regarding BC genetic research.

London et al. (2015) evaluated factors associated with 168 LW for their willingness to participate in a BC CT. Findings indicated that helping family members, (e.g., if the family member had cancer) helping someone else that they knew had cancer, and monetary compensation were factors that would make them willing to be in a CT.

A desire "to help" also was mentioned by all 6 focus groups comprised of AAs, Hispanics, and Caucasians in re­ search that assessed attitudes toward genetic research par-

Journal of Cultural Diversity • Vol. 26, No.3 Fall 2019

ticipation and data sharing (Lemke, Wolf, Hebert-Beime, & Smith, 2010). In other research, 57 % of Hispanics, 62 % of AAs indicated that it w as very im portant to participate as a volunteer in a clinical trial to im prove the health of others w hen deciding to participate in a CT (http: / / www. saludtoday. com / blog / poll-minority-populations-support- clinical-trials-but-participation-rem ains-low / . African Am erican w om en com m ented "your research will help future generations" w hen m aking a decision to participate in a genetic research study (Smith et al., 2018). A nother in­ vestigator reported that Latinos are willing to participate in CTs, especially to help treat their ill children (https: / / www. usatoday.com / story / new s / 2017 / 07 / 24 / kaiser-latinos- le ft-o u t-c lin ic a l-tria ls-a n d -p o ssib le -c u re s/103956714/. Ceballos et al. (2014) study revealed that Latino partici­ pants valued biom edical research as som ething that could potentially help themselves, their families, other Latinos, and the community.

Using a cancer registry approach, Pal, Rocchiio, Garcia, Rivers, & Vadaparam pil (2011) assessed factors associated w ith the recruitm ent of AAW for a study on inherited BC. The m ost frequently cited reason for study participation w as to learn m ore about personal cancer risk and risks to family (46%), followed by w anting to learn more about cancer research (24%), the convenience of study participa­ tion itself (18%), physician or other health care professional (5%), incentives provided by studies (3%) past positive experience w ith other research studies (3%), and recogniz­ ing someone on the study brochure (2%).

Trust seems to be a factor that LW consider w hen de­ ciding w hether to participate in cancer genetic research. Quinn, et al. (2011) reported on challenges in recruiting Mexican w om en for cancer genetics research, uncovering a sense of distrust of health research among potential partici­ pants at a health fair. Additionally, it has been reported that LW are less likely to trust m edications and have concerns related to being treated as a guinea pig w hen deciding to participate in a CT (http: / / www.expressnews.com / news / local / article / Researchers-encourage-Hispanic-women-to- join-9643084.php.

It appears that this sense of distru st am ong Latinas essentially m irrors the p erceptions of AAW and their p articipation in clinical research. Linden et al. (2007) revealed th at m any AAW w ere suspicious ab o u t the fun d in g sources for research studies and did not tru st the recruitm ent efforts in such studies. Smith et al. (2007) found an overall lack of trust in researchers and healthcare systems am ong AAW. Distrust of research studies also was reported by Rivers et al., (2017) in their interesting study, w hich assessed the inform ation needs of AAW regarding participation in cancer CTs. Huff (2016) also reported that there is m istrust of the m edical system related to earlier research injustices in her w ork regarding diverse popula­ tions in genetic research. Ulrich et al., (2013) noted a lack of trust am ong HW and m en as a barrier to pardcipating in biomedical research. Ochs-Balcom, Rodriguez, and Erwin (2011) evaluated how beliefs, perceptions, and know ledge in the AA com m unity im pact willingness to participate in a fam ily-based genetic epidem iology study. An elem ent of d istrust also seem ed to be apparent in this research as the w om en expressed a great deal of concern regarding con­ fidentiality of data. O ther barriers uncovered in the data were the possibility of having to provide a blood sam ple

and lengthy time com m itm ents for com pleting research study requirem ents.

R odriguez, Torres, a n d Erw in (2013) e v a lu a te d the feasibility of com m unity-based approaches for engaging m em bers of the Latino com m unity in biospecim en dona­ tion for cancer genomic research. Findings revealed that a m onetary incentive w ould influence their decision to participate in a biospecim en donation, as w ould a recom ­ m endation from their physician.

McDonald et al. (2012) assessed beliefs and attitudes regarding participation in cancer genetic research am ong AA's. F indings revealed th a t p a rticip a n ts considered legal, social, and ethical issues w hen deciding to partici­ pate in cancer genetic research. For example, participants expressed that they w ould consider factors such as the potential to experience negative side effects, the extent to which study sponsors (e.g., pharm aceutical company) and researchers were trusted, and possibility of exploitation. Participants also indicated they w ould consider inform a­ tion provided regarding study details, such as w ho has access to the study data, w hether or not subjects w ould have access to results w hen the study ended, and the p ro ­ cedures involved in study participation. A prim ary factor in subjects' decisions regarding participating in cancer genetics research was the potential benefit of the study. Personal benefits, as well as those to AA's and the public were factors that participants w ould think about w hen deciding w hether to participate in research. Subjects also considered the logistics of a study (e.g., study participation length and m onetary compensation).

A particularly interesting study by U nderw ood et al. (2013) exam ined factors associated w ith the participation of AA's in health-related genetic research. Results of this study indicated that participants w ith higher levels of know ledge regarding inheritable diseases/conditions and genetics, prior involvem ent in a health-related study, and an understanding of the risks, benefits, and utility of genetic testing were more apt to report a willingness to participate in health-related genetic research. The inves­ tigators noted that nearly all of the participants in their study were supportive of health related genetic research, b u t m ost revealed that they had "never been asked". In­ terestingly, Rodriguez et al. (2013) found that a m ajority of subjects in their study about community-based approaches for engaging Latinos in biospecim en donation for cancer genomic research had not previously donated any type of biospecimen. W hen participants were further queried about this, they revealed that the reason for this was never being asked to do so. M ost recently, AAW reported that they were less apt to be in research studies because they were never asked to participate (Smith et al., 2018).

The w illingness of AA's to p articip ate in precision m edicine research w as evaluated by Halbert, McDonald, Vadaparam pil, Rice & Jefferson (2016). Results indicated that more than two thirds of the participants (69%) w ould be "v ery /so m e w h a t unlikely or neutral" that they w ould p a rtic ip a te in a g o v e rn m e n t-sp o n so re d study, w hich involved providing a check swab and responding to a questionnaire, which w ould provide data that w ould be used in another study, and w ould not provide results to participants. M ost participants (86%) believed that the results of participating in cancer genetic research w ould be used to help future generations. Reasons for not participat-

Journal of Cultural Diversity • Vol. 26, No.3 Fall 2019

ing in cancer genetic research included: a) if the participant did not know w ho w ould be able to access their personal inform ation (60 % unlikely to participate); b) difficulty in getting to the study site (63% unlikely to participate); c) if the study results w ould not be m ade available to them (59% unlikely to participate); and d) participation in a study for a long length of time (48% unlikely to participate).

A n interesting qualitative study evaluated com m unity perceptions of genomic research am ong 91AA, Latino, and Caucasian participants (Isler, Sutton, Cadigan, & Corbie- Smith, 2013). Findings revealed that m ost participants had concerns related to research that addressed health dispari­ ties. M istrust of the governm ent, researchers, and fear of m edical abuse w ere some of the concerns that w ere m en­ tioned by AA's and Latinos. For some Latino participants, m istrust was closely linked to deportation fears regarding family m em bers w ho are undocum ented imm igrants.

N odora et al. (2016) evaluated biospecim en donation and data sharing am ong FIW w ho had undergone a breast biopsy at a safety net hospital. The investigators noted that the potential for increasing participation of diverse ethnic/ racial groups and u n derserved people can be obtained by partnerships am ong hospitals, safety-net clinics, and academic institutions, w hich will be crucial for precision m edicine efforts.

A lthough partnerships am ong clinics, hospitals, and acad em ic in s titu tio n s w ill be im p o rta n t in precisio n m edicine efforts, other factors also should be considered for increasing particip atio n of H ispanic indiv id u als in health-related research. For example, Q uinn et al. (2011) noted that language, cultural barriers, and m isunderstand­ ing of the consent process w ere some of the barriers that HW encountered w hen participating in health research. Furtherm ore, the authors noted that the m anner in which cancer is spoken about in Hispanic families and the socio­ cultural aspects of cancer m ay influence research participa­ tion rates. It has been suggested that some Hispanics m ay w ant to include family m em bers in their decision to p a r­ ticipate in research and they m ay place m ore im portance on faith than scientific data (https: / / w w w .linkedin.com / pulse / three-ways-increase-hispanics-particpation-clinical- trials-batista). Prior research also indicates that AAW acknowledge the im portance of family input w hen making a decision to participate in a cancer clinic trial (Rivers et al., 2017). Q uinn et al. (2011) pointed out that sensitivity issues such as building trust, targeting their needs, and providing education w ithin the context of the Hispanic culture is crucial. This m ay include research assistants having bilingual training on the standards for culturally and linguistically appropriate care (https: / / www.linkedin. c o m / p u ls e / three-w ays-increase-hispanics-particpation- clinical-trials-batista).

A Framework for Understanding Participation in Breast Cancer Genetic Research

Scientific investigations in this research area have had limited guidance from theoretical frameworks / models (see Table 1). A theoretical fram ew ork that m ay be particularly appropriate in this research is the socioecological m odel (SEM) (Salihu, Wilson, King, Marty, & W hiteman, 2015; Suther & Kiros, 2009). The (SEM) can be very helpful for addressing potential obstacles ( e.g., language or literacy barriers) that m ay be encountered in study recruitm ent/

participation and retention. In this m odel, factors and behaviors are assessed from a m ultilevel view such as in­ trapersonal (attitudes, beliefs, knowledge), interpersonal (cultural acceptance and social norms), institutional and com m unity (equal access to services and identification of resources), and policy (laws regarding discrim ination and confidentiality). Each level is influenced and reinforced by behaviors and factors from the other levels of influence (Suther & Kiros, 2009). In extending this m odel to m inority w om en and BC genetic research, this m odel w ould con­ sider BC genetic research participation as an outcom e of interaction/interrelationship am ong a variety of factors/ behaviors at intrapersonal, interpersonal, institutional and community, and policy levels. For example, if potential study participants express d istru st/su sp ic io n of medical research as a barrier to participation in BC genetic research, a thorough and on-going open com m unication by the re­ searcher and trained team m em bers should ensue about the im portant role of H um an Subjects Review Boards in the protection of research subjects.

Discussion M any of the factors that affect participation of AA's

in general BC clinical research/trials are also found to be factors affecting m inority participation in BC genetic re­ search. The aforem entioned studies indicate factors such as trust in health care systems and researchers, m onetary com pensation for research participation, culture, fear of m edical abuse, physician recom m endations, inp u t from family m embers, and altruism are all influences that m ay affect m inority w om en's decisions in deciding w hether to participate in BC genetic research. It is critical that research­ ers extend an invitation to AAW and LW for participation in BC genetic research. Prior research has revealed that m any individuals from under-represented groups have not been asked to participate in genetic research, although they are supportive of this type of research. Recognition of po­ tential concerns about breaches of privacy, discrimination, and stigm atizations is param ount, as they m ay negatively im pact participation in genetic research and genetic-related services (Suther & Kiros, 2009). Continued efforts m ust be sustained in safe-guarding genetic inform ation provided by participants, so that trust can be established and m ain­ tained betw een potential participants and the research comm unity. D oing this sh ould be helpful in assuring participants that their contributions will only be used to advance science, and ultim ately help them as well as oth­ ers. A lthough scientific w ork has been conducted in this research area, so m uch w ork still needs to be done. More descriptive and intervention research should be conducted to shed light on how AAW and LW ultim ately decide to participate in BC genetic research, and eventually targeting those factors significant to large groups of m inority wom en will be critical. The elucidation of those factors will enable us to learn m ore about im proving care through patient engagem ent in scientific research and im prove diversity in our research studies.

Strategies to Enhance Subject Participation Scientific know ledge acquired in clinical studies can

hopefully translate to im proving cancer disp arities in these vulnerable groups. If new scientific know ledge is to be developed regarding BC genetics am ong AAW and

Journal of C ultural Diversity • Vol. 26, No.3 Fall 2019

LW, then it becomes im portant to form ulate strategies that will encourage AAs and Latinos to participate in clinical studies. 1. As revealed by Reifenstein and Asare (2018), acknowl­

edging anticipated historical concerns up front - espe­ cially the Tuskegee Study- m ay be helpful in reducing potential participants' uneasiness. This may be aided by directly acknow ledging barriers to involvem ent a n d p a rtic ip a tio n in cancer research (Somayaji & Gates Cloyes, 2014), program s, and trials. M aintain­ ing an open dialogue about subjects' concerns m ay provide ongoing opportunities for the researcher to discuss research subject protection issues (e.g., confi­ dentiality, w hether or not subjects w ould have access to study results). If this open dialogue is done in a culturally sensitive m anner, subjects will feel valued and protected. Taking the time to carefully explain study procedures (e.g., inform ed consent) w ould also be helpful in building a sense of trust betw een study participants and the research team.

2. Interventions that are designed to m ore effectively inform , recruit, involve, a n d su p p o rt the decisions of m inorities willing to participate in health-related genetic research is critical (U nderw ood et al., 2013). U nderw ood et al. (2013) agrees that w ithout this type of approach, current participation trends for these m i­ nority groups will rem ain the same. Using this type of approach also m ay be helpful in m aking participants feel that research team m em bers care and value them. Issues such as m otivations regarding research p a r­ ticipation, and how different ethnic and racial groups assess harm s and benefits, are crucial to designing com m unity engagem ent strategies, m essages regard­ ing research, and recruitm ent plans (Isler, et al., 2013).

3. Com m unity involvem ent in recruiting AAW and LW for research studies can often be critical for success. Ewing, Thom pson, and Ricks-Santi (2015) pointed o u t th a t c o m m u n ity -b a s e d rese a rc h efforts have p ro v id e d success in the recru itm en t of m inorities in prior w ork. Smith et al. (2018) found success u s­ ing a com m unity based participatory approach and p ro viding know ledge regarding the im portance of p articipating in genetic research. C om padre et al. (2018) noted the im portance of com m unity involve­ m ent in BC genetic research. Therefore, com m unity based participatory research and / or engagem ent with com m unity-based organizations w ould appear to be a helpful strategy in increasing aw areness of BC genetic research opportunities for m inority women. Studies have show n im proved participation am ong AAs in genetics-genomic research if the research team also had m inority representation (Johnson, Powell-Young, Torres, & Spruill, 2011).

4. Physician engagem ent in research recruitm ent efforts is crucial. Physician involvem ent in study recruitment efforts have increased enrollm ent rates of AAs into cancer genetic studies (Ewing, et al., 2015). M inority wom en have expressed that they decided to participate in cancer genetic research because of a physician rec­ om m endation a n d /o r request (Pal et al., 2011; Nodora et al., 2016). Latino participants also have revealed that a physician recom m endation for a biospecim en bank donation w ould be trusted.

5. A person's culture should always be considered w hen providing health care. Acknow ledging and respecting a person's culture, and trying to w ork w ithin it, will better enable us to guide patients tow ard the best m edi­ cal course of treatment. By identifying and addressing cultural concerns/beliefs that underrepresented p o p u ­ lations m ay have about genetic testing and research, the nu m b er of these u n d e rre p re se n te d in dividuals inquiring about genetic counseling m ay be increased, ultim ately leading to m ore appropriate referrals to genetic services (Suther & Kiros, 2009). Provision of this culturally relevant inform ation can be done by trained health professionals (e.g., RN 's and NP's), as they are in key clinical positions to address these types of concerns. The developm ent of crucial policies that tackle the social, legal, and ethical aspects of genetic research and genomic m edicine can be advanced by enlarging the role that underrepresented individuals have in shaping genetic research (Suther & Kiros, 2009). Furthermore, inclusion of under-represented groups as team m embers, principal investigators (Pi's), a n d / or co-PI's should yield research that is m ore sensitive to cultural issues. Frierson, Pinto, Denm an, Leon, & Jaffe (2017) found that racial concordance betw een a researcher and a participant w as view ed as being culturally sensitive and positive. Finally, research findings should be shared w ith respondents as well as other individuals w ho have an interest in im proving the health status of underrepresented wom en. If all of this is done in a culturally relevant manner, m inor­ ity w om en should feel that there is an investm ent in their health, that their beliefs and thoughts matter, and ultim ately that their lives matter.

6. A ddressing anticipated concerns of discrim ination, stigmatizations, and potential breaches of privacy well in advance is critical. Participants should be provided w ith inform ation regarding the 2008 Genetic Inform a­ tion N ondiscrim ination Act (GINA). They should be inform ed that GINA protects Am ericans against dis­ crim ination based u p o n their genetic inform ation as it pertains to em ploym ent and health insurance (http: / / w w w .breastcancer.org/sym ptom s/ te s tin g / genetic/ pros_cons ; h t t p s : / /w w w .g e n o m e .g o v /2 4 5 1 9 8 5 1 / genetic-information-nondiscrimination-act-of-2008 / ). Participants should also be rem inded that IRB's have safeguards and standards in place to protect research participants. They should be inform ed that the genetic data obtained during the study will be stored in a way that does not directly identify the research subjects, and that the data will only be released to the participant u n ­ less there is authorization to release to others. Clearly, researchers should alw ays consult w ith their IRB's prior to developing their genetic research protocol, so that potential issues (e.g., confidentiality, potential stigm atizations) can be adequately a d d ressed and participants can be protected (https: / / w w w .genom e, gov /10001752 / protecting-hum an-research-subjects- g u id e /) . P ro v id in g this in fo rm atio n openly w ith participants should be especially helpful in allaying these types of fears.

Journal of Cultural Diversity • Vol. 26, No.3 Fall 2019

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Journal of Cultural Diversity • Vol. 26, No.3

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