Cancer history and cancer risk communication among Arab–American families: Perspectives of young Arab–Americans in Michigan

Abstract

The Arab population in the United States is among the most understudied ethnic populations in access to cancer genetics services. Similar to other underserved populations, Arab–Americans face several institutional, social, and cultural barriers that inhibit access to and uptake of cancer genetic counseling and germline genetic testing. Among the factors hindering comprehensive cancer risk evaluations is the limited communication about cancer diagnoses among relatives, reducing knowledge of family history information. The primary aim of this study was to characterize the communication patterns about cancer diagnoses and a potential hereditary cancer predisposition within families in an Arab community in Southeast Michigan. We conducted three focus groups and one individual interview with young, primarily acculturated Arab–Americans in the state of Michigan (n = 9, median age = 22 years). None of the study participants had a personal cancer history, and all had at least one relative with cancer. Our participants' responses were consistent with previous research that illustrated limited conversations about cancer and potential cancer risks within Arab families, particularly among extended relatives. Limited communication about cancer was attributed to geographic barriers between relatives, protection of younger relatives from harmful or unnecessary information, fatalistic views about cancer, and mistrust of Western medicine. These factors were also suggested to discourage potential discussions of any known hereditary cancer predisposition in their families. As a result, many participants emphasized the need for individualized and culturally tailored cancer genetics education and counseling for Arab–Americans.

What is known about this topic?

Institutional, social, and cultural barriers continue to impact knowledge of and access to cancer genetic counseling and testing for patients with a personal or family history of cancer. To identify how these barriers manifest in the Arab–American population, Mellon et al. (2013) explored attitudes, knowledge, and beliefs about hereditary breast cancer among Arab–American women and observed high levels of secrecy about a breast cancer diagnosis, driven by cancer stigma and community perceptions. However, how these factors influence Arab–Americans' attitudes about cancer genetic testing has not been explored.

What does this paper add to this topic?

This qualitative study expands upon findings from Mellon et al. and broadens the context to any cancer in a family, beyond breast cancer. Importantly, participants were directly probed to share their views about how a potential hereditary cancer syndrome may be discussed in their family and their attitudes about pursuing cancer genetic testing. From focus group discussions with a subset of young individuals from the Arab–American population in Michigan, we observed that geographical barriers, parental protection from harmful information, a family's reputation in the Arab community, and religious beliefs influence the communication dynamics about a cancer diagnosis and the perceived value of genetic testing information. These findings emphasize cultural and intrafamilial factors in the Arab–American community that should be considered when providing tailored and culturally conscious cancer genetic counseling services to Arab–American patients.

1. INTRODUCTION

Approximately 5%–10% of cancers are due to a hereditary cancer syndrome (Garber & Offit, 2005; Jahn et al., 2022). Professional society guidelines recommend consideration of genetic counseling, genetic testing, and personalized management for a variety of indications, including a personal or family history of cancers and tumors that can be attributed to detectable hereditary cancer syndromes (ACOG, 2019; Frey et al., 2022; NCCN, 2026). However, racial and ethnic disparities in cancer genetics services persist, evidenced by lower rates of referrals to cancer genetic counseling and fewer genetic testing orders for Black–American, Hispanic–American, and Asian–American patients compared to non‐Hispanic White‐American patients (Muller et al., 2018). These gaps create downstream disparities in personalized cancer surveillance, chemoprevention, and preventative surgeries for high risk and affected patients (Chapman‐Davis et al., 2021). Furthermore, a lack of consideration of social and cultural differences contributes to inequities in cancer genetic counseling for underserved patient populations. Compared to non‐Hispanic White‐American patients, non‐Hispanic Black, Hispanic, and Asian–American patients have less awareness about genetic counseling and testing for cancer susceptibility and are more likely to express concerns about a hereditary cancer syndrome diagnosis. These concerns include the negative emotional impact a genetic condition may have on their relatives, risk of confidentiality breach, stigmatization, and social and medical discrimination (Chapman‐Davis et al., 2021; Forman & Hall, 2009; Hann et al., 2017; Sussner et al., 2011). These concerns may hinder intrafamilial communication about hereditary cancer syndromes and negatively impact the uptake of cascade testing (Claes et al., 2003; Chivers Seymour et al., 2010; Chopra & Kelly, 2017; Hodan et al., 2024; Lumpkins et al., 2023; McGivern et al., 2004). While inquiries have been made to characterize the motivators and barriers of cancer genetic counseling and testing in non‐Hispanic Black–American, Hispanic–American, and Asian–American patient populations, the experience of Arab–Americans in the context of cancer genetic services has yet to be robustly explored.

Three to four million individuals in the United States identify as Arab–American or Middle Eastern/North African (MENA), with the majority claiming ancestry from Lebanon, Syria, Palestine, Egypt, and Iraq (Demographics AAI, 2020, AAIUSA). “MENA” is a geographic term that envelops individuals of Arab and non‐Arab identities in the Middle East (i.e., the Arab Peninsula, the Levant, Iraq, Iran, and Turkey) and North Africa (Morocco, Libya, Egypt, Tunisia, Sudan, Algeria, etc.) (Awad et al., 2021). Meanwhile, the term “Arab” is used to define individuals whose countries of origin are within the Arab League, a political confederation of nations that includes the majority of, but not all, countries in the MENA region (Awad et al., 2021). While there is overlap between these two identifiers, many individuals in the Arab league do not identify as Arab, including Chaldeans and Kurds in Iraq, Iranians, and Turks. While several nuances color the use of each term, many individuals in our study population identify as Arab. Therefore, the term “Arab” or “Arab–American” will be used interchangeably in this publication.

Several cross‐sectional studies among Arab countries have sought to describe the prevalence of hereditary cancer syndromes in their patient populations. From data collected in Lebanon, Saudi Arabia, and Oman, the rate of germline pathogenic variants in BRCA1 and BRCA2 in patients with breast cancer was estimated to be 3%–22% and 0.4%–19%, respectively (Al Amri, 2025). A systematic review of studies within 22 Arab countries estimated the prevalence of pathogenic variants in BRCA1 and BRCA2 among patients with ovarian cancer to be 6.6% (Younes & Zayed, 2019). Additionally, from pan‐cancer panel testing performed in an unselected cohort of 3319 patients in Jordan with a broad range of malignancies, a pathogenic variant was detected in 25% of patients (Abdel‐Razeq, 2024). Currently, there is a lack of data on the rates of inherited cancer predispositions in the Arab–American population. However, the significant rates of hereditary cancer syndromes observed in the Arab region may also be reflected in the Arab population in the United States.

Despite the established utility of cancer genetic services in reducing cancer mortality, social and cultural factors are among several barriers that discourage uptake of cancer genetic testing (CGT) among Arab–Americans. A focus group organized by Mellon et al. (2013) explored knowledge and attitudes about breast cancer and hereditary breast cancer syndromes with Arab–American women from Dearborn, Michigan with a personal diagnosis or relative with breast cancer. Responses from the focus group revealed that stigma and shame about a cancer diagnosis drove high levels of secrecy about a cancer diagnosis within participants' families. Focus group members also described a fear that a cancer diagnosis will be discovered by the broader Arab community and obstruct younger female relatives' prospects for marriage. While this remains to be the only published study exploring attitudes about hereditary cancer in an Arab–American community, similar findings have been reported in other underrepresented populations (Allford et al., 2014; Hann et al., 2017). For example, in a cohort of 1916 adults ages 18–70 years in England, higher levels of stigma about cancer and decreased uptake of cancer screening were observed among Black and Asian participants, compared to White participants (Vrinten et al., 2019). In a similar study performed in the United Kingdom assessing access to genetics services for women of South Asian ancestry, findings showed that South Asian participants were more likely to view cancer as a taboo topic and may refrain from using the word “cancer” in conversations with family members (Atkin et al., 2009).

These social and cultural factors may contribute to limited communication about new cancer diagnoses and identified inherited cancer syndromes, inaccurate family history intake, lack of comprehensive cancer risk assessment, and insufficient recommendations for cancer surveillance for potentially high‐risk Arab–American patients. Therefore, to further elucidate the barriers and drivers in family communication about cancer and inherited cancer syndromes among Arab–Americans, we expanded on the Mellon et al. study and conducted focus groups with both male and female individuals from Michigan's Arab–American community with a broad range of cancers in their family. This study explored the dynamics of cancer and hereditary cancer risk communication among Arab–American families and perspectives on the role of health‐care providers in promoting communication about cancer and hereditary cancer conditions.

2. MATERIALS AND METHODS

2.1. Study context

Approval of this study protocol was obtained from the Institutional Review Board of the University of Michigan Medical School (IRBMED) in November 2020 (#HUM00185709).

The study team collaborated with members of the Arab–American Community Center for Economic and Social Services (ACCESS) and their research committee. Recommendations from the research committee were implemented in the focus group design and creation of the interview guide (Supplement S2). ACCESS' translation services were used to translate all recruitment materials from English to Arabic. Participant responses and themes were presented to the ACCESS research committee for commentary and input on the interpretation of the findings to incorporate community perspectives in the study conclusions. This study was completed as part of the first author's master's thesis requirement.

2.2. Positionality statement

HMA is a female‐identifying cancer genetic counselor at a tertiary cancer center in the United States. She was a genetic counseling student at the time this study was performed. She is a first‐generation Sudanese and Muslim‐American. Her upbringing within the MENA community both in Sudan and in the United States, in addition to her training as a genetic counselor, motivates her interest in addressing gaps in access to genetic counseling services for patients in and from the MENA region. Additionally, while her identity as a Sudanese‐American allowed her to contextualize the perspectives shared by the study participants, continuous reflection on her position as a student in a genetic counseling program with education on CGT was required to minimize bias during the focus groups and data analysis.

RA, the primary moderator of the focus groups, is a female‐identifying, Palestinian, board‐certified genetic counselor, and is bilingual in both Arabic and English. She has 20 years of experience in reproductive and pediatric genetics, with a particular focus on fertility genetics and assisted reproductive technologies. She was invited to participate in this project given her perspective as an Arab genetic counselor, experience providing genetic counseling for patients in and from the Middle East, her research experience on the impact of culture and acculturation on patient experiences in health care, and her strong commitment to improving access to genetic services for Middle Eastern and Arab patients both within and outside of the United States.

The remaining authors include two cancer genetic counselors (MM, EH) and two public health researchers (KR, ED). MM, a member of the coding team, serves as program director and faculty for the genetic counseling program and was the primary mentor and committee chair for this thesis work, providing consistent supervision and guidance during the study process. Her position as a cancer genetic counselor outside of the Arab–American community was considered during the coding analysis and interpretation of the dialogue, consistent with a reflexive thematic analysis. EH is an early career cancer genetic counselor with extensive experience in clinical genetics research. Her prior research efforts involving barriers and psychosocial factors influencing hereditary cancer testing were used to further contextualize the major themes obtained from the focus groups. KR is a faculty professor with expertise in health behavior and health equity, including the use of motivational interviewing in the development of behavior change programs. His research focus also includes addressing health disparities in underserved populations, particularly the use of technology‐based health tools to increase access to personalized health interventions. ED is a senior public health researcher, whose research focus includes implementation of motivational interviewing in genetic counseling practice and predictors of hereditary cancer genetic testing uptake. Both KR and ED's knowledge of qualitative research methods was used in the critical consideration of the focus group design. Additionally, their expertise in motivational interviewing provided valuable insights into potentially effective health interventions in tackling the barriers identified from these study findings.

2.3. Participant recruitment

A convenience sampling approach was used to recruit Arab–American participants from the state of Michigan in November 2020 through February 2021. Participants were recruited from: (1) the Michigan Institute of Clinical Health Research (MICHR), where details of the study were shared in the program's participant portal (umhealthresearch.org); (2) ACCESS, where recruitment flyers were shared in the organization's social media accounts (Twitter, Instagram, Facebook) and ACCESS website; and (3) the University of Michigan Cancer Genetics Registry (IRB #HUM0004340), where a study letter was sent to patients of self‐reported Arab or Middle Eastern descent who consented to contact about research participation. All recruitment materials contained a hyperlink to a survey generated in Qualtrics XM that was active from November 2020 to February 2021 (Supplement S1). Eligible participants: (1) were 18 years of age or older, (2) had self‐reported Arab or Chaldean maternal and/or paternal ancestry, (3) had a self‐reported personal and/or family history of cancer, and (4) had a preferred spoken language of Arabic or English. While carrying a separate identity from Arab–Americans, individuals from the Chaldean community were included in this study given the prevalence of Chaldeans in southeast Michigan and the overlap of cultural values between Chaldean–Americans and Arab–Americans (Hakim‐Larson et al., 2007).

2.4. Data collection and focus group design

Eligible participants were asked to review an informed consent document stating the goals and procedures of the study and to provide an electronic signature. Participants answered standard demographic questions, including reported gender, age, maternal and paternal ancestry, education level, employment type, and relationship status (Supplement S1). Additional information such as family history of cancer, genetic counseling or testing exposure, and Likert scale questions regarding attitudes about cancer and genetics were captured. At the end of the survey, respondents were asked to indicate interest in participating in a virtual focus group. Potential focus group participants were contacted by email or telephone and were scheduled for a virtual, recorded focus group held between January 2021 and March 2021.

In the formation of the study design, individual interviews and focus groups were both considered. While individual interviews offered the ability to capture more in‐depth and unfiltered perspectives, particularly about sensitive topics such as cancer and hereditary cancer risk, a focus group approach was selected to allow for an exchange of viewpoints between Arab–American community members about topics the study team anticipated participants had not previously considered. Guidelines from Krueger and Casey (2014) were used to design four focus groups with a maximum of four participants per group, with the intent of capturing a diverse collection of responses. This structure fostered an interview environment designed to facilitate the sharing of opinions about complex ideas and scenarios presented during the discussion. All focus groups were performed virtually via Zoom Conferencing due to social gathering restrictions during the COVD‐19 pandemic and to increase focus group attendance. Focus groups were designed to last a maximum of 90 min. Use of the video feature of Zoom was optional for all participants. Participant names were anonymized during each video call. All final focus group participants (n = 9) were mailed a $25 check for their participation. The focus groups were facilitated by a primary moderator (RA) and a secondary moderator (HA). The secondary moderator was present during all focus groups to pose follow‐up questions relevant to the study aims. The identities and credentials of the moderators were disclosed at the beginning of each focus group. No prior relationships existed between the moderators and the participants. No additional members of the study team had direct interaction with the participants.

Partially derived based on findings from Mellon et al., an interview guide was created and organized into five topic domains: (1) family communication about cancer, (2) understanding and attitudes about inherited cancer risks, (3) intersection of cancer and cultural or religious beliefs, (4) attitudes about genetic counseling and testing, and (5) resources to facilitate cancer risk communication in families (Supplement S2). A pilot focus group was performed with three Arab–American volunteers to identify necessary modifications to the focus group guide. Following the pilot, the interview questions were modified to create clearer distinctions between the first and fourth domains. Audio recordings were collected during all focus groups.

2.5. Data analysis

During each focus group, field notes were taken by the secondary moderator (HA) to document the dynamics of the conversation among the moderators and participants that could not be captured in the transcripts. Additionally, a brief meeting was held between the moderators following each focus group to discuss points of interest in the focus groups and to summarize potential themes. Transcription software, Trint, was used to transcribe the audio of each recording. The transcript from the pilot focus group was not included in the study analysis.

A constructivist–interpretivist paradigm was used as the basis of this qualitative study, as this philosophical framework emphasizes the contextualized reality of multiple subjects, a fundamental lens the authors sought to utilize in understanding the basis of participants' responses (Wainstein et al., 2023). While the interview guide was derived from findings in Mellon et al., a primarily reflexive thematic analysis was used to review the transcripts, in which themes were derived from inductive codes designated in the transcripts of three focus groups and one individual interview (Saldana, 2015; Braun & Clarke, 2021). Each transcript and recording underwent initial review by the moderators to ensure accuracy between the transcript and audio recording. A preliminary assessment of two transcripts was performed by two designated coders (HA and MM) to identify quotes of interest. After the first round of discussions, a list of excerpts was refined and labeled with an initial code by each coder using the coding software, Dedoose. The two lists of initial codes were compared and condensed to generate six parent codes and 54 subcodes. Over a 4‐week period, the codebook was reviewed and discussed between the coders and the study authors in an iterative process to identify general themes.

3. RESULTS

3.1. Participant demographics and cancer history

Overall, 33 of 76 survey respondents met study criteria; 29 respondents expressed interest in participating in a focus group. Twenty potential focus group participants subsequently recused themselves from the study, failed to attend their scheduled focus group, or did not respond to the communication sent via email or telephone (Figure 1). Nine participants were interviewed within three focus groups and one individual interview (Table 1). All focus groups were conducted in English. Participant ages ranged from 18 to 34 years, with a median age of 22. Most focus group participants were female (n = 6), and nearly all were pursuing or had obtained an academic degree, such as an associate, bachelor's, master's, or a doctorate degree (n = 8). All participants self‐identified as Arab–American (n = 8) or Chaldean–American (n = 1) per the eligibility criteria. Participants reported Muslim (n = 4), Christian (n = 4), or agnostic (n = 1) religious affiliations. Lebanese, Syrian, Yemeni, Palestinian, or Iraqi maternal and/or paternal ancestry was reported. Most individuals were employed or were full‐time students, with most (n = 5) reporting their relationship status as single. Participants were asked to indicate a personal or family history of breast, ovarian, uterine, pancreatic, colon, prostate, or other cancer in the prefocus group survey (Supplement S1). All focus group participants reported a negative personal history of cancer and a positive family history of cancer in at least one relative (Table 2). Over 50% reported the cancer type(s) in their family as “Other” (i.e., skin, lung, bladder, thyroid cancers), cancer types with a low suspicion for a hereditary cancer predisposition. None of the focus group participants had any prior experience with genetic counseling or genetic testing.

FIGURE 1.

Flowchart representing the progression of study participation. Of 76 survey respondents between November 2020 and March 2021, 33 participants met study criteria. Twenty‐nine eligible participants expressed interest in attending a virtual focus group. Twenty of the 29 interested respondents later actively or passively reused themselves from the study. Of the nine focus group attendees, eight were scheduled into one of three focus groups, and one participant attended an individual interview.

TABLE 1.

Focus group demographics.

	N (%)
Reported gender
Female	6 (66)
Male	3 (33)
Age
Median	22
Range	18–34
18–21	4 (44)
22–25	4 (44)
26+	1 (11)
Ancestry	(Maternal/Paternal)
Lebanon	3 (33) / 3 (33)
Syria	2 (22) / 2 (22)
Yemen	1 (11) / 1 (11)
Palestinian	–/1 (11)
European	1 (11) / 1 (11)
Religion
Muslim	4 (44)
Christian	4 (44)
Agnostic	1 (11)
Education
Some college credits	2 (22)
2‐year Associate's degree	2 (22)
4‐year Bachelor's degree	3 (33)
Master's degree	1 (11)
PhD/Doctorate	1 (11)
Employment
Full‐time	2 (22)
Part‐time	3 (33)
Student	4 (44)
Unemployed	1 (11)
Relationship
Single	5 (55)
Long‐term relationship	3 (33)
Currently married	–
Separated/divorced	1 (11)

Note: Utilizing a prefocus group survey, demographic information, including age, reported gender, maternal and paternal ancestry, religious affiliation, education level, employment status, and relationship status was collected from all survey respondents. Described in Table 1 is the demographic information of the virtual focus group attendees (N = 9).

TABLE 2.

Cancer family history, genetic counseling, and testing experience.

	N (%)
Family history
Breast	3 (33)
Ovarian	–
Endometrial	–
Colorectal	1 (11)
Pancreatic	1 (11)
Prostate	–
Other	5 (55)
Prefer not to answer	–
Did any relatives directly talk to you about their cancer diagnosis?
Yes	4 (44)
No	5 (55)
Genetic counseling
Yes	–
No	9 (100)
Genetic testing
Yes	–
No	8 (88)
Not sure	1 (11)
I believe that genetics plays a role in cancer
Very much	5 (55)
Somewhat	4 (44)
Very little	–
Not at all	–

Note: From the prefocus group survey, survey respondents indicated if they have a personal history of breast, ovarian, endometrial, colorectal, pancreatic, prostate, or other form of cancer in their family, including among extended relatives. Among the focus group participants (N = 9), other forms of cancer reported were skin, lung, thyroid, and bladder cancers. Participants were asked to indicate if there was a direct discussion of the cancer diagnosis between the participant and their affected relative(s). Participants were asked to report any prior experience with genetic counseling or genetic testing and their views on the role of genetics in a cancer diagnosis.

3.2. Attitudes and general communication patterns about cancer

Overall, focus group participants expressed a strong understanding of cancer as, commonly, a sporadic disease caused by age, environmental exposures, and shared familial risk factors. Many disclosed that they learned about the cancers in their family from their parents, not from the affected relative(s). However, these conversations with their parents were described as limited. Participants expressed that they would feel most comfortable disclosing hypothetical genetic testing results to their parents and siblings compared to extended relatives. Many felt comfortable discussing the topic of cancer with individuals outside of their family, such as friends, classmates, or work colleagues. When evaluating the attitudes and communication patterns about cancer, cancer risk, and genetic testing among our participants, we identified five primary themes: (1) geographical barriers, (2) parental protection, (3) reputation, (4) religious beliefs, and (5) mistrust of the American medical system.

3.3. Geographical and generational barriers

When asked about communication about cancer in their families, some participants noted that geographical distance between them and their extended relatives limits conversation about cancer diagnoses in their family. A cancer diagnosis was rarely disclosed directly to the participants by the affected individual because they were not in regular communication with their relatives overseas, either because of limited relationship due to geographical distance or language barriers (e.g., loss of Arabic language skills due to upbringing and education in the United States). Therefore, many reported that their parents are the primary communicators with their extended relatives who reside in their country of origin. This was highlighted by Participant 4–2, a 22‐year‐old with a family history of cancer, including breast cancer, in his maternal and paternal aunts, uncles, and grandparents:

I heard about their cancer diagnosis through our…like our parents… And it might be just because some [of] our family members are overseas when they're diagnosed, some of them are in the states. (Participant 4–2)

Most participants highlighted that a generational gap between themselves and their extended relatives also influences disclosure of the relatives' cancer diagnoses. Some shared that cancer is a normalized topic for their nuclear family in the United States in comparison with their family in the Arab world. However, participant 4–1, a 34‐year‐old female of Yemeni origin, with an aunt who was diagnosed with leukemia, had a contradictory view and did not feel that her living in the United States and being in a younger generation was relevant in the limited communication about cancer in her family:

… our family is actually very close, even though I have aunts and uncles overseas. We're constantly in touch, so we're constantly communicating back and forth… It's not a concern, it's not an [effect] since we're very tight. (Participant 4–1)

3.4. Family protection

Participants expressed that when a family history of cancer is not immediately disclosed to the younger members of their family, this is partly motivated by parents' desire to spare them from any worry or concern about their relative's cancer diagnosis. One participant described this as fueled by the association of cancer with a poorer prognosis compared to other health conditions. Participant 1–1, who had a relative overseas with a cancer diagnosis shared:

I think it's just like the need to not want to put a burden or worry on the younger generation, but I do think that the term cancer holds a lot of weight, which makes them a lot less inclined to share that information as opposed to something else. (Participant 1–1)

When asked in a hypothetical scenario how relatives would feel learning about the participant undergoing CGT and testing positive, most participants anticipated a negative response, specifically from their extended relatives. Participants predicted that their relatives believe undergoing genetic testing is seeking out the same unnecessary worries that they strive to protect the younger generation from. Participants were subsequently asked the reverse scenario, if and how they would like to be informed of an inherited cancer syndrome in the family. While how participants would like to receive this information varied, most emphasized that they want to know about the cancer diagnoses and cancer risk in their family so that they can make informed health decisions. This viewpoint was expressed by Participant 2–1 who shared that:

I think that I would be OK with them sharing that information with me in private, maybe like away from other family members… And I mostly want that for preventative measures and just being able to have that social support. That being said, if I knew that that family member wasn't comfortable with it, I'm not going to push for that information…if I really felt at risk or if I felt like they were at risk, I would go and do a genetic test myself and I'd get some more information if I was really, like, anxious about that and worried. (Participant 2–1)

An outlying sentiment was expressed by Participant 4–1 who would not want to be told about CGT results in her family:

I'd rather have them not share it, that they have it, but if comes down to it… if they have the knowledge of the diagnosis, or the cancer itself, bringing out to the table with the information… …to be honest with you, I wouldn't want [genetic testing], just the fact that I wouldn't want that in my mind…Honestly, just the fact that it's going to overwhelm me or my family. Give us anxiety, stress. I just don't need that right now (Participant 4–1)

3.5. Reputation in the Arab–American community

A family's reputation within the larger Arab community was described to be a significant social factor that influences communication about a cancer and a potential hereditary cancer condition within and outside of the family unit, as shared language, country of origin, and cultural values create close relationships between Arab–American families. As a result, some participants said they were encouraged by their relatives to be protective of personal health information out of concern that information would spread into their local community. For example, Participant 2–3, a 20‐year‐old female with a family history of cancer among multiple extended relatives abroad shared:

… That's also one reason that Arabs might just like not to share information like that, because a lot of people are afraid of their reputation and the community, judging them and like hearing what they would have to say about that. So, everyone tries to, like, keep your business as like your business. (Participant 2–3)

Participants were directly asked to comment on the potential role of cancer stigma and shame in discouraging communication about cancer in their family. Overall, participants showed ambivalence regarding the presence of cancer stigma or shame. Some participants denied the presence of both stigma about cancer and internal shame felt by individuals for having cancer. Others affirmed that there may not be internal shame felt by affected relatives, but more so general stigma about cancer within their community. For example, Participant 4–3, a 24‐year‐old female of Chaldean descent, described hesitancy around speaking of cancer, when she said:

…I've noticed a lot of stigma and not… I don't know if I've noticed that much shame, but a lot of stigma to talk about it, it's like weird to say the word “cancer” …Nobody will name it. (Participant 4–3)

Despite the ambiguous attitudes about cancer stigma and shame, many participants more confidently noted the association between cancer and fear, death, loss, or grief. Therefore, some concluded that the hesitancy to speak about cancer may be to avoid discussing an emotionally charged topic, not because of any stigmatization or shame about a cancer diagnosis.

When prompted to consider how marriageability influences conversations about cancer, and potentially a hereditary cancer syndrome, within both Arab–American families and the community at large, most participants expressed that it was not a major factor that influenced past conversations about cancer or potential conversations about inherited cancer risks. Some further elaborated that cancer or an inherited cancer syndrome in a family may be a factor their parents consider when providing their opinion about a potential spouse for their child. This was described by Participant 1‐2, who expressed:

I think for us younger generation, that's a very slight chance that it [inherited cancers] would impact much, but for the parents of their future partner, they'd probably be more worried… (Participant 1–2)

3.6. Religious beliefs and attitudes about cancer

All participants expressed that religious beliefs played a significant role in how a cancer diagnosis is viewed and disclosed in a family. Some expanded that they were informed of the cancer diagnoses in their family to provide the affected relative with religious support, particularly for relatives who were in the later stages of their disease. Religious practices, such as prayer and dua, an invocation to God, were described to be important in the grieving process for Muslim families and in creating a supportive environment for their affected relative. In contrast, one participant expressed that a fatalistic belief about cancer may be a deterrent in seeking or discussing cancer risk information because of the belief in a cancer diagnosis as God's will, independent of cancer risk factors. Because of the view that any life hardship is fated, including a cancer diagnosis, there would be skepticism about the cancer risk information obtained from CGT, particularly for older extended relatives and community members. For example, Participant 3‐1, a 20 year‐old male, who shared that he had an uncle and a great uncle who passed away from bone cancer and pancreatic cancer, expressed that:

… I would definitely say some community members would be like “oh, why would you get this? I mean, you might get it, you might not, it's all God's plan. Why would you bother [getting genetic testing]? (Participant 3–1)

As a result, some participants expressed hesitancy in disclosing any CGT results and anticipated a lack of interest from older family members in learning about a hereditary cancer predisposition in their family.

3.7. Mistrust in US health care

Many participants described general mistrust of Western medicine and the US health‐care system as another factor relevant in negative perceptions about CGT. This mistrust was reportedly tied to a reliance on holistic medicinal practices among older family members or community members or prior adverse experiences in the US health‐care system. For example, participant 4‐3 expressed she:

…would be a little hesitant to tell my family [about my genetic testing results] … for some or maybe a lot of people in the community that I'm from, there is like a distrust of like medicine and science… They would say, like “oh, you need a second opinion. Like, you can't trust that… And that would make me feel worse… (Participant 4–3)

Participants that described the relatives' mistrust also indicated hesitancy in sharing any positive CGT results out of apprehension about invalidating response from family members. For example, in one focus group, mistrust in CGT was described to stem from the association of clinical, diagnostic germline testing with direct‐to‐consumer testing that is used to acquire ancestry and general health risk information and not diagnostic testing with downstream effects on cancer treatment or surveillance.

3.8. Educational interventions

Overall, all participants expressed that there is a need for improved communication about cancer and cancer risk in their family and community. When probed for ideal methods to help guide these conversations, many expressed that the focus should be on improving education about cancer etiology, risk factors associated with specific cancer types, and why genetic testing may be recommended to patients. While some expressed that resources such as pamphlets, brochures, or videos would be helpful in sharing this information with patients in their community, many expressed the importance of receiving this information from health care clinicians from within the Arab community who understand the cultural values that influence Arab–American patients' decisions around cancer and cancer risk communication.

4. DISCUSSION

Analysis from focus groups conducted with nine Arab–American participants within the younger generation of the Arab–American community in Michigan provided several themes that are both overlapping and distinct from findings in prior studies. Consistent with findings from Mellon et al., participants described that the discussion of cancer and hereditary cancer in their families was limited. Due to Arab families immigrating into the United States from their country of origin, younger individuals in the family were described as relying on their parents as the primary source of family history information. However, parents may withhold news of a new cancer in the family to protect their children from unnecessary negative emotions. Additionally, reduced communication and privacy about a cancer diagnosis or a potential hereditary cancer syndrome with community members were emphasized, particularly to protect a family's reputation within their immediate community. This is likely to maintain the inclusion and acceptance received from community members.

Importantly, our study also obtained novel findings about the factors that influence the exchange of information about cancer diagnoses and possible CGT results between family members. Specifically, participant responses suggest that personal shame about a cancer diagnosis may be less prevalent in the Arab community than previously suggested and that the fear associated with a cancer diagnosis may be a stronger deterrent against discussing a cancer diagnosis in a family. Similarly, our participants described a weaker connection between marriageability and communication about cancer or inherited cancer, likely a reflection of a generational gap within the Arab families on the potential impact of cancer on marriage prospects. Additionally, while perceptions on hereditary breast cancer were previously explored by Mellon et al., perceptions on CGT and disclosure of test results were not captured. Our study findings suggest that while our participants would consider genetic testing, if recommended, they anticipated that their older relatives and community members would not find value in CGT results. This may reflect fatalistic views of cancer, creating skepticism toward CGT as a tool with limited clinical utility.

While overlapping thoughts were shared by our study participants, disparate responses were noted by Participant 4–2, a 34‐year‐old female of Yemeni descent, previously married, and who maintains close communication with her extended relatives in Yemen. She held a firm position that cancer diagnoses and cancer‐related genetic conditions do not need to be disclosed and that nondisclosure can reduce the level of stress and anxiety associated with such diagnoses. Participant 4–2 often emphasized an overlap between her views and the views of her older relatives on the topic of cancer and other health issues. The divergent views between Participant 4–2 and the other participants may reflect a shift from collectivist to individualistic values fed by the acculturation of first‐generation Arab–Americans, specifically a shift in values, ideas, beliefs, and behavioral patterns that reflect the dominant ideals in the United States (APA Dictionary of Psychology, 2020). In the context of genetic testing, individualism may manifest as a motivation to have genetic testing, based on an individual's independent desire to obtain personalized health information. In contrast, a collectivist framework prioritizes family and community well‐being and may foster hesitancy toward any cancer risk information that is considered harmful.

While not absolute, individualistic beliefs are most prevalent in the West, particularly American and European societies, while family‐oriented values dominate in the East, including Africa, East Asia, and the Middle East (Krassner et al., 2017). Therefore, the responses of our participants portray a potential polarity between older, recently emigrated Arabs and first‐generation Arab–Americans on the importance of cancer risk information and potentially interest in genetic testing, if clinically indicated. Represented in Figure 2, a synthesis of the major themes from this study, the individualistic values fostered by acculturation, such as medical autonomy and trust in the health care system, may increase the value of cancer risk information compared to family and community‐centered decision making based on faith, community values, and family protection that decreases the value of cancer risk information (Figure 2). The role of acculturation on attitudes about genetic testing and hereditary cancer risk has been characterized in the Latine community, where acculturated Latin‐American women were observed to be more likely to be familiar with genetic testing, find benefits in hereditary cancer risk information, and less likely to comment on cultural or social barriers against CGT compared to less acculturated women in the Latine community (Ioffe et al., 2022; Sussner et al., 2009).

FIGURE 2.

Conceptual framework extrapolated from themes identified from the focus groups of this study. Decreased valuation of cancer risk information, both from family history and cancer genetic testing results, is driven by motivations to protect family members from emotional burden and harm, a perception of a cancer diagnosis as a predetermined event, and a desire to maintain control of one's perception within the Arab community. As evidenced by participants' responses, acculturation into Western culture and adoption of individualistic beliefs, value of medical autonomy, and knowledge of cancer screening and trust in the US health‐care system promote increased valuation of cancer risk information.

Most clinicians in the United States lean toward individualistic values, reflected by core ethical principles in medical care that prioritize patient autonomy, beneficence, and non‐maleficence (Varkey, 2021). As a result, clinicians in the United States typically believe that medical information empowers patients in making informed medical decisions. However, this premise may ignore concerns about the impact of a diagnosis on a family, as well as the health inequities that inhibit patients who are under‐resourced from accessing the downstream benefits of health information. In the context of clinical cancer genetics, patients with confirmed hereditary cancer syndromes may find low clinical actionability in a cancer genetic diagnosis due to the social, cultural, and institutional barriers that inhibit access to clinically indicated surveillance services.

To incorporate familial and communitarian values in the discussion about cancer family history and cancer genetic testing with Arab–American patients, many participants described the benefit of having health‐care providers from the Arab population in community interventions. Participants felt that Arab–American providers can more readily consider the cultural and social factors influencing their experience with a cancer diagnosis or cancer syndrome. Multiple community‐based participatory processes have been developed to address gaps in the awareness of and compliance with breast cancer screening in the Arab–American community (Ayash et al., 2011; Ayyash et al., 2019; Jaffee et al., 2021; Vicini et al., 2012; Arshad et al., 2011). These educational interventions have included forums or breast screening education workshops performed by Arab–American community health workers or staff trained in cultural responsiveness. Based on post‐intervention surveys, most of these programs observed an increase in knowledge about breast cancer screening and higher screening uptake among surveyed Arab–American women. The success of these interventions should be considered when attempting to increase cancer genetic counseling referrals and discussion of cancer genetic testing for Arab–American patients with a suspected hereditary cancer syndrome.

A potentially effective counseling strategy to incorporate in a community‐based intervention is motivational interviewing (MI), a patient‐centered counseling approach that identifies clients' reasons for and against change and guides patients in creating an individualized plan toward beneficial health decisions (Resnicow et al., 2022). A technique specific to MI is the Elicit‐Provide‐Elicit (EPE) framework that allows providers to assess a patient's understanding, gaps in knowledge that the patient seeks to address, and any motivations in seeking new information. This contrasts with a more standardized or scripted approach to patient education in which new information is shared without consideration of the patients' desires or interests. While there remains a gap in the literature assessing the effectiveness of MI in increasing the uptake of genetic evaluations among minority populations, MI has proven to be an effective tool in improving several health behaviors, such as nutrition and physical activity in adult cancer survivors and cardiomyopathy screening in adults with childhood onset cancers (Seven et al., 2023; Waters et al., 2024). Therefore, this approach has the potential to help currently active cancer genetics experts provide Arab–American patients with individually tailored information about cancer and cancer risk, while honoring the cultural and individuals' values that drive high quality decision making.

4.1. Strengths and limitations

We found the utilization of virtual focus groups to be advantageous in this study as it allowed for the cultivation of rich discussions among multiple participants. Additionally, our collaboration with the ACCESS research team ensured that community perspectives were considered in the study design, materials, and data analysis. While we observed common responses within our cohort, our small participant pool of nine individuals was biased toward a sub‐demographic of young, educated, first‐generation Arab–Americans with no personal history of cancer, nor any prior exposure to genetic counseling or testing. Additionally, we relied on hypothetical scenarios about CGT and disclosure of test results to identify potential attitudes about hereditary cancer predispositions in the Arab community. As a result, additional interviews with older individuals in the population with a personal history of cancer are essential to compare with accounts from our participants. Additionally, perspectives from those with experience in genetic counseling and testing, particularly a diagnosis of an inherited cancer syndrome, are vital to capture gaps in counseling about cancer family history and genetic testing information and building culturally attentive interventions. To increase participation by affected and at‐risk individuals, future studies can consider individual interviews with participants from this community to alleviate potential privacy concerns and provide increased anonymity. Additionally, an online recruitment strategy was utilized during this phase of the study due to social restrictions during the COVID‐19 pandemic. We believe that expanding our recruitment into in‐person community engagement events and collaborations with health‐care institutions in areas densely populated with individuals in the Arab–American population will increase recruitment of older and affected members of this community.

5. CONCLUSIONS

We performed three focus groups and one individual interview with nine young adults from the Arab–American community in Michigan and identified multiple factors that influence communication about cancer and cancer risk among their families. Several participants indicated that geographical distance between nuclear and extended relatives created a logistical barrier in discussions about cancer diagnoses between them and their extended relatives. They also discussed that protection from unnecessary worry, reputation in their community, religious beliefs, and mistrust of Western health‐care practices in the United States all play significant roles in limiting communication about cancer diagnoses and potential cancer predispositions in their families. Additionally, we captured novel accounts about the perceptions of CGT and disclosure of inherited cancer syndromes, specifically that while most participants feel personally motivated to pursue genetic testing based on their family history of cancer, older members of their families and community would have a negative perception toward CGT. Furthermore, participants described a dynamic of mutual hesitancy between their relatives and themselves to disclose genetic testing results to family members. Many of these beliefs are likely colored by a collectivist ideal that is in tension with the individual values that younger Arab–Americans use to make medical decisions. Decisions to not discuss a cancer diagnosis or a potential hereditary cancer syndrome in a family may contradict clinicians' recommendations that prioritize the patient, particularly uptake of genetic testing to inform personalized cancer management recommendations. Therefore, we believe that individualized education and elicitation of personal values and beliefs, particularly from Arab–American providers, would be an effective method in guiding patients toward more informed decisions about cancer communication and consideration of CGT.

AUTHOR CONTRIBUTIONS

All authors made substantial contributions to the conception and design of this work, including data acquisition and analysis, and critical drafting and revision of this publication. All authors provided final approval of this version of our manuscript for publication. All authors agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Authors Abdel‐Salam and Marvin confirm that they had full access to all data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

FUNDING INFORMATION

Michigan Association of Genetic Counselors Student Award, National Society of Genetic Counselors Research SIG Award.

CONFLICT OF INTEREST STATEMENT

The researchers declare that they have no conflict of interest.

ETHICS STATEMENT

Human studies and informed consent: This study was reviewed and granted exemption by the Institutional Review Board of the University of Michigan Medical School (IRBMED). All procedures followed were in accordance with the ethical standards of the committee responsible for human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from individuals who completed the online survey and submitted their responses.

Animal studies: No human or nonhuman animal studies were carried out by the authors for this study.

Supporting information

Data S1

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.