“Hope at a Better Chance”: Perspectives on Genetic Counseling and Testing among Black Individuals with Prostate Cancer

doi:10.21203/rs.3.rs-3576579/v1

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Research Article

“Hope at a Better Chance”: Perspectives on Genetic Counseling and Testing among Black Individuals with Prostate Cancer

https://doi.org/10.21203/rs.3.rs-3576579/v1

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Introduction:

Black individuals have the highest prostate cancer (PCa) incidence and mortality rates of any racial or ethnic group. Racial disparities persist in the understanding and uptake of genetics services, while the perspectives of Black individuals with PCa regarding genetic counseling and germline genetic testing for inherited cancer risk (GC/GT) remains understudied.

Methods

This qualitative study explored attitudes, facilitators, and barriers to awareness, interest, and uptake of GC/GT among Black individuals with PCa. Eight individuals who self-identified as African American and/or Black with a personal history of PCa participated in individual telephone interviews using a semi-structured interview guide. Interview transcripts were analyzed using both an inductive and deductive coding approach, constant comparison, and selective coding.

Results

Five major themes were identified: (1) uncertainty surrounding personal relevance of GC/GT, (2) family influence and impact of GC/GT, (3) healthcare providers and institutions as gatekeepers of GC/GT, (4) community identity, influence, and impact of GC/GT, and (5) systemic barriers to GC/GT exemplify larger structural constraints. A key finding was the influence of community, a collective identity among Black individuals and a desire to benefit the Black community, in motivating research participation and pursuit of GC/GT to lessen racial disparities in PCa.

Discussion

Individual, interpersonal, institutional, community, and structural factors are both barriers and facilitators to awareness, interest, and uptake of GC/GT. Multilevel interventions such as communicating personal, familial, and community implications of GC/GT, improving patient-provider relationships and genetics education, and addressing systemic barriers are necessary to increase efficacy, utility, and equity in GC/GT.

Cancer disparities

cancer genetic counseling

germline genetics

prostate cancer genetics

qualitative

Prostate cancer (PCa) is the second most common cancer diagnosis and the fifth leading cause of cancer deaths in the United States each year (Cancer Stat Facts: Common Cancer Sites, 2022). Seminal work investigating PCa germline genetics revealed that 11.8% of individuals with metastatic prostate cancer have germline pathogenic or likely pathogenic (P/LP) variants in DNA repair genes (Pritchard et al., 2016). Further research has found that cancer family history and high Gleason score are associated with findings of germline DNA repair P/LP variants in individuals with PCa (Giri et al., 2019). Identification of individuals with germline P/LP genetic variants is vital due to potential PCa treatment implications, including targeted PARP inhibitors and immune checkpoint inhibitors (Mateo et al., 2015; Tucker et al., 2019). As a result, germline genetic testing for inherited cancer risk (GC/GT) has emerged as critical to patient care for individuals with high-risk and advanced PCa, and/or those with a family history. Multiple expert consensus guidelines recommend GC/GT in this patient population (Giri et al., 2020; National Comprehensive Cancer Network, 2022a). However, there is emerging research on disparities in PCa diagnosis and care for Black individuals.

Although Black populations have the highest mortality rate for PCa of any racial or ethnic group in the United States, the vast majority of PCa patients who have undergone GT for inherited cancer risk are of European ancestry (Berro et al., 2021; DeSantis et al., 2016). Black individuals are more likely to be diagnosed with PCa at an earlier age and with higher-grade disease, even after accounting for socioeconomic risk factors (DeSantis et al., 2016; Kwon et al., 2020; Nettey et al., 2018). Additionally, Black individuals are less likely to receive surgical treatment and more likely to experience treatment delays and complications when they do receive surgical treatment (DeSantis et al., 2016; Schmid et al., 2016). Due to these factors, NCCN PCa Early Detection guidelines recommend people who identify as Black and/or African American should begin discussing PCa screening with their healthcare providers at age 40, five years earlier than individuals of other races and ethnicities (National Comprehensive Cancer Network, 2022b).

Social determinants of health are essential in thoroughly examining racial disparities, as race is a socially constructed category (Chowdhury-Paulino et al., 2022). Residential segregation and SES, proposed surrogate factors for structural racism, were shown to be strongly associated with racial disparities in PCa prognostic factors, treatment access, and mortality (Poulson et al., 2021; Press et al., 2022). When controlling for factors related to healthcare access, researchers found a significant decrease in survival disparities following prostatectomy (Wen et al., 2021). Additionally, access and uptake of genetic services present equally stark gender and racial inequities, with barriers at the patient, provider, and healthcare system levels (Chapman-Davis et al., 2021; Childers et al., 2018; Weise et al., 2022). For example, physicians who serve a high proportion of minority patients are significantly less likely to have ever referred a patient for genetic counseling and testing (Shields et al., 2008). Given the impacts of GC/GT for PCa patients and their families, equitable access to genetics services is imperative. Understanding the perspectives of Black individuals with PCa can provide important insights towards initiatives aimed at reducing disparities in awareness and uptake of GC/GT for inherited cancer risk.

Among individuals with PCa, receiving genetic counseling (GC) was the single most significant influence on whether a patient undergoes germline genetic testing (GT) (Borno et al., 2021). GC helps individuals at risk for hereditary cancer syndromes make informed decisions regarding GT and improves patient engagement and satisfaction (Zakas et al., 2019), as well as having impacts for family members if a P/LP gene variant is detected. However, most research into genetic information preferences is focused on females, with only limited studies into the perspectives of white males. A recent qualitative study by Greenberg et al. found that most patients with PCa felt GT was impactful for themselves and their families, however, the study population was mostly white males (2020). Black males’ perspectives regarding GC/GT are understudied. Research into the attitudes of Black individuals towards somatic genomic testing and PCa research identified facilitators of family history, the value of prevention, and the desire for health education, however, most participants did not have a history of PCa (Rogers et al., 2018). The perspectives of Black individuals with PCa regarding awareness and uptake of GC/GT are yet to be explored, particularly given that Black populations are disproportionately affected by racial disparities in PCa incidence, morbidity, and mortality.

In light of the existing disparities regarding PCa and Black populations, GC/GT have the potential to be incredibly beneficial. By identifying individuals with an inherited cancer risk, better therapeutic selections could help increase response to treatment and reduce PCa mortality in Black populations (DeSantis et al., 2016; Kwon et al., 2020; Nettey et al., 2018). Furthermore, better defining Black individuals with PCa’s attitudes and beliefs toward genetic referrals, counseling, and testing could enhance the utility and efficacy of genetic services for Black individuals with PCa. This study sought to identify attitudes, facilitators, and barriers to awareness, interest, and uptake of genetic counseling and genetic testing for inherited cancer risk in Black individuals with PCa.

Study Design

The study was deemed exempt by the Institutional Review Board at Northwestern University (IRB STU#00213284). We employed a qualitative design with one-on-one telephone semi-structured interviews to examine the perspectives of Black individuals with PCa regarding GC/GT. A qualitative approach was chosen to gain an in-depth understanding of awareness, interest, and uptake of GC/GT among Black individuals with PCa.

Concepts of Ford and Airhihenbuwa’s public health critical race (PHCR) praxis were employed in the design of this study (Ford & Airhihenbuwa, 2010a, 2010b). PHCR was conceptualized to tailor critical race theory for health equity research. This iterative methodology combines theory and experiential knowledge to understand and counter racial health disparities. PHCR methodology was chosen to inform study design to center lived experiences among Black individuals with PCa and enhance understanding and explanation of race as a social construct and risk factor for discrimination, rather than viewing racial disparities in PCa as biologically driven (Ford & Airhihenbuwa, 2010a, 2010b).

Participant Selection

Individuals who self-identified as African American and/or Black, were English speaking, over eighteen years of age, and with a personal history of PCa who met NCCN PCa Version 3.2022 criteria for genetics services were eligible. Exclusion criteria included previously undergoing genetic counseling and/or germline genetic testing for inherited cancer risk.

To recruit participants, we used purposive and convenience sampling methods (Tracy, 2019). Eligible individuals were identified initially via the Registry of Urologic Outcomes at Northwestern Medicine (IRB STU#00213284). The registry contained over 1100 PCa patients and approximately 9200 African American and/or Black urology patients. These lists were crossmatched to generate a list from the registry, which included Black patients diagnosed with or treated for metastatic, regional (node-positive), or high-risk/very high-risk localized PCa. Forty-four individuals were deemed eligible from the Registry of Urologic Outcomes at Northwestern Medicine. The principal investigator (BP) contacted these individuals via email from November-December 2021 and invited them to participate in the study. Those who did not respond to the initial email were emailed a second invitation approximately two weeks after the first invitation.

Additionally, recruitment flyers containing the contact information for the principal investigator were posted to the African American Men and Prostate Cancer Facebook group, which has 146 members, run by the Prostate Cancer Foundation in January 2021. Participants were also recruited through a member of the study team’s (AM) personal connections and community-based volunteer work with Black males with PCa who previously indicated their interest in participating in research in February 2021. An interview appointment was scheduled when participants responded to recruitment emails or otherwise contacted the principal investigator indicating they were interested in participation. They received the informed consent document via email at the time of scheduling. There were no participants who contacted the principal investigator that were excluded due to prior GC/GT.

Data Collection

Prior to starting the interview, the informed consent document and study purpose were explained to participants. Verbal consent was obtained before the interview and audio recording. Interviews were audio-recorded and conducted by the principal investigator (BP) via telephone in a private setting. Participants’ demographic information, including age, age of diagnosis, occupation, number of children, and family history of prostate, breast, ovarian, and other cancers, were collected.

Study data was collected through semi-structured individual telephone interviews. The multidisciplinary research team created an iterative interview guide with guidance from the literature and research aims, which was adapted throughout the interviewing process (Greenberg et al., 2020; Tracy, 2019). The interview guide consisted of general, open-ended questions and subsets of probing questions, focused on attitudes and beliefs regarding genetics services. Interview questions broadly included: experiences with PCa diagnosis and treatment, family communication dynamics, and perspectives on hereditary cancer risk, GC/GT, and racism in healthcare. The interview guide was piloted with two healthcare professionals, one genetic counselor and one individual with public health and health education expertise.

Upon completion of the interview, participants were asked for their mailing address and sent a $75 Visa gift card for participating in the study. Participants who indicated interest were also provided with information on obtaining GC/GT following the interview. This information included resources on PCa genetics, information regarding scheduling for a local GC, and information about the PROMISE study (NCT04995198) which offers free GC/GT to PCa patients.

Data Analysis

Interviews were de-identified and transcribed verbatim by the principal investigator. All transcripts were uploaded to Dedoose version 9.0.46, and data was analyzed using a combination of both inductive and deductive coding approaches (Tracy, 2019).

Two coders, the principal investigator (BP) and a research team member with qualitative experience (BMS), independently coded the first three transcripts using a line-by-line open coding method. The coders then discussed and compared codes to create a consensus codebook. The principal investigator coded the remaining transcripts. The constant comparative method and selective coding were then used on all transcripts to identify relationships between codes and develop themes (MacFarlane et al., 2014; Tracy, 2019). The complete research team discussed potential themes and theoretical frameworks to come to an agreement on the data. Following the identification of themes, the social ecological model (SEM) was applied to better understand the interaction of multiple influences on perspectives regarding GC/GT.

The SEM posits that people both affect, and are affected by, multiple levels of influence. McLeroy and colleagues introduced five levels of influence for health behaviors: (1) individual factors, (2) interpersonal factors, (3) institutional factors, (4) community factors, and (5) public policy factors (Fig. 2) (McLeroy et al., 1988). An individual’s awareness and uptake of GC/GT can be affected by many facilitators and barriers at multiple levels. Previous research identified that individual beliefs, community dynamics, and access to healthcare play a role in attitudes towards GC/GT among Black individuals (Lumpkins et al., 2020). Therefore, the SEM was chosen as a theoretical framework to demonstrate the reciprocal influence of constructs arising from our qualitative analysis.

Overview

Six participants were recruited via the Northwestern Medicine Registry of Urologic Outcomes. One participant was recruited from the African American Men and Prostate Cancer Facebook group run by the Prostate Cancer Foundation, and one was recruited through a research team member’s (AM) personal connection for a total of eight interviews. All participants self-identified as African American and/or Black, were diagnosed or treated for PCa at an academic medical center and did not report previous genetic counseling or testing for inherited cancer risk. All participants met NCCN PCa Version 3.2022 criteria for testing either through their own disease characteristics or family history. For the six participants recruited through the Northwestern Medicine Registry of Urologic Outcomes, disease characteristics were confirmed through medical records. The remaining two participants’ disease characteristics were self-reported.

Participants’ median age was 69 years old and ranged from 48 to 72 years of age. Seven of the eight participants self-reported a family history of cancer. Of these seven participants, all had a first-degree relative (FDR) with a cancer history. Family history of PCa was the most reported compared to family history of other cancer types, with five participants having at least one FDR with PCa (Tables 1 and 2). Three participants were previously aware of GC and three participants were previously aware of GT for inherited cancer risk. Participants who were previously aware of GC were not aware of GT, and vice versa (Tables 1 and 2). Four participants were informed of GC or GT by a healthcare provider following their PCa diagnosis, while one was aware of GC from their own research and 1 was aware of GC from personal experience with GC for an unrelated indication. Six of eight participants were currently retired, and all participants were from diverse occupational backgrounds (Table 2). All participants had at least one biological child, with three participants having at least one adopted or step-child. Interviews ranged in length from 15–47 minutes, with an average length of 27 minutes (Table 2). Participants were asked their race/ethnicity as well as if they preferred African American or Black to refer to their race or ethnicity. Participants’ self-identified, preferred language to refer to their race/ethnicity is listed in Table 2. Further participant characteristics are described in Tables 1 and 2. In the reporting of results, African American and Black will both be used to remain consistent with participants’ chosen language surrounding their racial and ethnic identities.

Table 1

Collated Participant Demographics
		N	%
Total		8
Metastatic PCa		3	37.5%
High/Very High Risk Localized PCa		4	50.0%
Intermediate Risk Localized PCa		1	12.5%
Family History (FDR, SDR, & Other)		7	87.5%%
	Prostate Cancer	5	62.5%
	Breast Cancer	1	12.5%
	Ovarian Cancer	0
	Other Cancer	3	37.5%
Age, median (range)		69 (48–72)
Age at Diagnosis	< 50y	1	12.5%
Age at Diagnosis	60–69	7	87.5%
Marital Status	Single	1	12.5%
	Married	2	25.0%
	Unmarried Partner	0
	Divorced	1	12.5%
	Unknown	4	50.0%
Education	Completed High School/GED	1	12.5%
	Some College	1	12.5%
	Completed College	0
	Completed Graduate or Professional School	2	25.0%
	Unknown	4	50.0%
Parent to Biological Children		8	100.0%
Parent to Adopted/Stepchildren		3	37.5%
Aware of Genetic Counseling		3	25.0%
Aware of Genetic Testing		3	37.5%

Table 2

Individual Participant Demographics
Participants		1	2	3	4	5	6	7	8
Self-Reported Race/Ethnicity		Black	African American	African American	African American	African American	African American	African American/Black	African American/ Black
Age		48	65	70	68	72	71	63	72
Age at Diagnosis		< 50	60–69	60–69	60–69	60–69	60–69	60–69	60–69
Metastatic		Yes	Yes	Yes	No	No	No	No	No
FHx PCa		Yes	No	Yes	No	Yes	Yes	Unknown	Yes
	FDR	1		1		2	3		1
	SDR	1		0		0	0		0
	Other	0		0		0	2		0
FHx Br/Ov Ca		No	No	No	No	No	Mother, Breast	No	No
FHx Other Ca		No	Father, unknown type	Father, Lung	Mother, Pancreatic; Paternal Great Aunt, Colon	No	Mother, "Blood Cancer"	No	No
BiologicalChildren		Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes
	Sons	2	1	0	0	4	3	0	2
	Daughters	1	1	3	1	0	0	1	0
Occupation		Service Industry	Retired- Counselor	Retired	Retired- Service Industry	Attorney	Teacher	Retired- Debt Collection	Retired- Government
Aware of GC		No	No	Yes	Yes	No	Yes	No	No
Aware of GT*		No	Yes	No	No	No	No	Yes	Yes
Interview Time (minutes)		15	25	24	27	47	20	30	31
FHx: Family History, FDR: First-Degree Relative, SDR: Second-Degree Relative, Br/Ov Ca: Breast or Ovarian Cancer. *Awareness of germline genetic testing for inherited cancer risk

Interviews displayed that participants' awareness, interest, and access to genetic counseling and testing for inherited cancer risk is influenced by factors at multiple levels. Analysis of interview data yielded five key themes. While two new individual codes were introduced in interview 8, the themes were mostly saturated (Table 3). All participants discussed the personal relevance of GC/GT and the influence of healthcare providers and/or healthcare institutions influencing awareness, interest, and uptake, of GC/GT. Seven of the 8 participants discussed structural barriers and the impact of family on attitudes toward GC/GT. Six of 8 participants discussed community identity, influence, and impact of GC/GT. These themes that are organized according to levels from the SEM framework, along with representative quotes (Table 4).

Table 3

Themes Represented in Interviews
Theme	Interview
Theme	1	2	3	4	5	6	7	8
Uncertainty Surrounding Personal Relevance of GC/GT	X	X	X	X	X	X	X	X
Family Influence & Impact of GC/GT	X	X		X	X	X	X	X
Healthcare Providers & Institutions as Gatekeepers of GC/GT	X	X	X	X	X	X	X	X
Community Identity, Influence, & Impact of GC/GT	X	X		X	X		X	X
Systemic Barriers to GC/GT Exemplify Larger Structural Constraint	X	X	X	X	X		X	X

Theme 1: Uncertainty Surrounding Personal Relevance of GC/GT

SEM Level: Individual Factors

Participants discussed how their attitudes towards GC/GT were affected by whether the results would be personally relevant and impact their PCa diagnosis. They generally questioned both the utility of GC/GT if it were performed prior to their diagnosis, as well as after their diagnosis. When asked what would help them decide if they were interested in undergoing GC/GT, participants mostly desired more information about how GC/GT could have affected their screening behavior and current diagnosis.

“What is it about the testing that shows that I’m more likely to get it? I already know that because I’m an African American male. But what is it about the testing then that would help me? If I’m more likely to get it, then what does that mean? What are the next steps? Are there different tests I should do at an earlier date that I wouldn’t do otherwise?” (Participant 5)

After discussing and learning about GC/GT throughout the course of the interview, all eight participants reported that the potential of GC/GT to aid in prevention and earlier detection of PCa would have been important to know about prior to their diagnosis. Therefore, participants generally recommended that information about GC/GT was preferred as early as possible– either before diagnosis or immediately following. However, they also acquiesced that at the time of their diagnosis they were primarily focused on getting through their cancer treatment. Participants expressed they were “dealing with it [PCa] as it goes” (Participant 1) and lacked awareness and understanding of how GC/GT fit into that process (Table 3). Of the six participants aware of either GC or GT, four recalled their awareness was due to a provider offering either GC or GT after their diagnosis. Three of these four participants discussed their lack of interest in GC/GT due to limited information of its implications regarding diagnosis and treatment.

“I wasn’t interested in that, I was interested more in getting better. So if it's not going to help me get better, I don’t have time for that right now. I’m stressed out with knowing I got cancer. That’s how I felt. People don’t understand, you’re kind of stressed out. Why do I wanna fill out something that maybe can help others, but will it help me?” (Participant 7)

Overall, participants expressed that more information regarding how GC/GT could affect their individual behavior before, during, and after PCa diagnosis would positively influence their attitudes towards genetics services.

Theme 2: Family Influence and Impact of GC/GT

SEM Level: Interpersonal Factors

The participants discussed how their family dynamics affected their awareness of inherited PCa risk and interest in GC/GT. Several participants revealed how their family medical history and communication, or lack thereof, influenced their perspectives regarding GC/GT. Those who had limited family communication discussed how it restricted their awareness of inherited cancer risks as a possibility (Table 3). In contrast, participant 4 elaborated that informing family of genetic implications would be one benefit of undergoing GC/GT:

“I guess the information would be helpful if, to let me know the history of where it came from. Which side of the family, you know, or something like that so I can make that side of the family aware of it. I mean, that’s just one example of how it could be helpful for me.” (Participant 4)

Participants also considered how the potential impact of GC/GT for future generations, such as children and grandchildren, influenced their desire to undergo GC/GT.

“I’m one of those people that you know, I got two grandsons and a son who might benefit from the testing, number 1. Hopefully none of them have to go through what their grandfather has gone through. So that’s number 1. I think that it would be beneficial to them, you know. Like I said, I was an addiction therapist, so both my kids have the possibility of being addicted you know, because of their father having that trait too. So it’s like I’m passing this on to my kids, what else can I pass on?” (Participant 2)

Overwhelmingly, participants who expressed interest in undergoing GC/GT were motivated by familial implications. They thought that GC/GT was important to provide siblings and children with information that could aid prevention and earlier detection of PCa.

Theme 3: Healthcare Providers and Institutions as Gatekeepers of GC/GT

SEM Level: Institutional Factors

Relationships with healthcare providers and medical institutions were explained as both facilitators and barriers to GC/GT awareness and uptake. Four participants reported that they were made aware of either GC or GT when offered by their providers following diagnosis. However, most participants discussed general restrictions in the flow of information, with several commenting on a specific lack of communication regarding the availability of GC/GT by their provider (Table 3). When asked to describe barriers to genetics services, many participants cited gaps in health education from providers:

“Barriers? Just the information not getting disseminated about this process.” (Participant 6)

In addition to gaps in dissemination of genetics education, general mistrust of healthcare as an institution was identified as a barrier. While only one participant attributed medical mistrust to historical harms of health institutions (i.e., United States Public Health Service Tuskegee syphilis study) as a reason behind mistrust, five participants mentioned current harms of healthcare systems.

“A number of people that have a, especially in the African American community, a well-founded historical distrust of the medical profession. For a couple reasons, one because of tests that had been done for medical research that were not in their best interest and were done because they were African American guinea pigs, you know the Tuskegee experience, etc. etc. The other being… you have probably not the best relationships between the majority community and the minority community. There’s an inherent distrust there to some extent. And to some extent there may not be the caring that would be if we had more African American physicians.” (Participant 5)

However, individual healthcare providers who earned trustworthiness were cited as an exception, and helped alleviate wariness. One participant explained the importance of the healthcare profession building relationships through approaching each patient as an individual and rejecting generalization biases due to an individual’s racial or ethnic identity.

“African American community and patients are as diverse as any. You’re going to have some that are more accepting of what the doctor says. You’re going to have some that are more challenging of what the doctor says. You’re going to have some, you know, there’s the broad spectrum, just like there is in any community. So recognizing that and adjusting the relationships to that, I think, is going to be important in approaching the issue of genetic testing or counseling as well.” (Participant 5)

Differences were reported in participants’ attitudes towards healthcare and genetics services on an institutional level. Many participants discussed positive relationships with their primary care, urology, and oncology physicians, while also expressing skepticism towards genetic testing, as well as healthcare as an institution. To bridge this discrepancy, participants reported that open conversation with their trusted providers would help facilitate uptake of GC/GT.

Theme 4: Community Identity, Influence, and Impact of GC/GT

SEM Level: Community Factors

A majority of participants discussed how community dynamics affected awareness and interest in GC/GT. Masculinity and prioritization of basic needs (i.e., food, housing) were cited to explain limited community conversation surrounding health and genetics services (Table 3). Reluctance to seek healthcare was also frequently noted as influencing PCa care. When describing barriers to uptake of GC/GT, one participant reported the following as a reason for delaying healthcare:

“Fear… a lot of us [Black people] hate going to doctors, you know.” (Participant 1)

Six out of 8 participants discussed community as a motivating factor for both research participation and interest in GC/GT. Several reported wanting to contribute to the current research study as a way to help the Black community. When asked their initial thoughts about genetic testing for inherited cancer risk, one participant answered,

“If you have a lack of research with, regarding African Americans and if I can contribute with my experience to help better understand it, then I don’t have a problem with it.” (Participant 4)

Participants also reported that cancer diagnoses and genetics services were not commonly discussed among community members, and that they faced challenges conversing about these topics following their diagnosis. Several people addressed their motivation for participating in research as a way to increase awareness and encourage discussion surrounding PCa.

“When I found out I tried to talk to different people. Older men, or just men period who may have had it and whatnot. And it’s like picking teeth. I could tell I was making them uncomfortable talking about it. It needs to be made more easily discussed. How you get there, I’m not totally sure, but I know the light needs to be shined on it. It’s one of the reasons I’m taking this call.” (Participant 8)

In addition to detailing potential personal and familial impacts of GC/GT, participants discussed how GC/GT could benefit the broader Black community and give others the chance to prevent PCa, reduce their risk, and detect PCa earlier. Some reported how integrating GC/GT into care could help many people, given the increased risk of developing PCa among African Americans.

“Since our community is at such extremely high risk, that’s something that needs to be taken care of immediately and not dilly dally-ed around with it…Access to healthcare isn’t something that we always have. So how do we change this so that people are able to get this testing, number one. And secondly, be able to get the maximum benefit from. So the earlier I believe, the earlier that they are, and it’s detected– a better chance, or a hope at a better chance.” (Participant 2)

Participants emphasized the role of community as a facilitator to both research participation and GC/GT uptake. Increasing awareness and education regarding PCa risk factors, disparities, and genetics among community members was widely suggested to expand receipt of benefits from GC/GT.

Theme 5: Systemic Barriers to GC/GT Exemplify Larger Structural Constraints

SEM Level: Public Policy Factors

Throughout the course of the interviews, seven of the eight participants reflected on systemic health inequities, including access to care and gaps in dissemination of health education. Unavailability of health education and incarceration were cited as barriers to accessing GC/GT for the Black community. Limited access to care and health education were noted to result from structural obstacles to these resources. When discussing whether discrimination impacted access to cancer genetics services, one participant responded,

“Yes, because I haven’t heard, I just found out about it now, you know. A lot of information isn’t available in our community.” (Participant 1)

They discussed times when they compared the care they received to that of white individuals with PCa, as well as differences in facility access and insurance coverage determining their level of care (Table 3). Several participants cited financial obstacles and health insurance as barriers to receiving GC/GT, while others examined how their income or insurance status allowed them to receive care that they felt was superior to others who did not have the same access to care.

“You go into the poorer neighborhoods, and they have a lot of walk-in centers, walk-in clinics, walk-in doctors. Everything is microwaveable. It’s not your own personal doctor. I had the privilege of having doctors…you know, I’m working with a hospital system. But a lot of people have to go through these other places and get referred to somebody else that’s not probably as good.” (Participant 7)

While overt interpersonal racism in healthcare experiences were not widely reported, six of the eight participants recognized the influence of systemic racism on social determinants of health in their experiences and those of their peers. When discussing whether discrimination had impacted their health or experience with healthcare, one participant described how the ordinariness of racism is an underlying factor in healthcare and in society.

“I mean, racism exists everywhere, subtle, or otherwise. And so, has there been sometimes, probably, that doctors I’ve seen over the course of my life, might not even know it but have had issues? Probably, because that’s just life. But for me specifically, I’ve always had what I would consider access to pretty good healthcare… So I’ve been privileged more than the average person. Is there racism, subtle, conscious, or subconscious, that exists in healthcare? Yea. Because it exists in America. It always has.” (Participant 5)

Overwhelmingly, participants discussed the interplay of both facilitators and barriers to awareness, interest, and uptake of GC/GT among various personal and environmental factors. It was generally agreed that factors influencing GC/GT awareness and interest were affected by individual, familial, institutional, community, and societal factors. This complex interaction facilitated analysis of the results using the SEM framework.

Table 4

SEM dimensions and themes regarding awareness, interest, and uptake of GC/GT.
SEM Dimension	Exemplar Quotes
Individual	If you're going to offer it, you should offer it in the beginning. But the question is, does that have an affect on your treatment plan? You know, in other words, what's the purpose? If you've already been diagnosed, then what's the purpose? (Participant 3)
Interpersonal	It could play a part, but if your family’s not talking about it, and not telling you nothing, hiding it, that’s even worse because now you don’t know and then you get it. You go to them and ask them, and like they’re denying it. So my father was like very secretive, so it didn’t help me much. My grandfather was passed away. What other line do I have? (Participant 7)
Institutional	I think those things should be discussed openly and thoroughly to get, I just think that whole conversation is closed off. People are uncomfortable talking about it and I don’t think I’m so uncomfortable talking about it, but the information is not easily gotten… I’ve never had a doctor mention, ‘oh, you should have genetic counseling.’ Never. Ever. (Participant 8)
Community	I think that for the most part in the Black community where I come from there was no real talk about this as genetics are involved. We didn’t talk about it. It wasn’t on our social agenda. And basically, they’re trying to live. I think it’s a wonderful thing that we’re talking about it today, that people could uh be aware then that there’s possibly issues in their family that could lead them to an adverse health event. (Participant 2)
Public Policy	I’ll give you an example. When I was going, all through the choices that I had was like radiation, surgery, things to that effect. The radiation was limited to, a radiation whereby other facilities had the, the pills that they would inject into the prostate to be more precise. The facility that I went to did not offer that or insurance would not cover that. (Participant 4)

This is the first known qualitative study to examine attitudes, facilitators, and barriers to awareness, interest, and uptake of GC/GT for inherited cancer risk among Black individuals with PCa. Due to the expanding clinical relevance of genetics in PCa management, racial disparities in PCa care, and the potential impacts on family, this study’s objectives are increasingly relevant. Our findings suggest that multilevel influences, including individual, interpersonal, institutional, community, and systemic factors, are key determinants among Black individuals with prostate cancer.

Although much attention has been paid to these factors among Black individuals with breast cancer, studies into the perspectives of Black individuals with PCa are sparse. Research into GC/GT uptake among women with breast cancer and mostly white PCa patients discussed concerns about treatment implications(Greenberg et al., 2020; Underhill-Blazey et al., 2021), while a study among Black individuals, although not solely comprised of PCa patients, proposed prevention and early detection as the main priority for future PCa research (Rogers et al., 2018). In our study, participants expressed a desire to understand how GC/GT could affect them personally and contemplated the point of GC/GT now that they were already diagnosed. Many participants noted limited previous knowledge but primarily considered how GC/GT could have changed their screening behavior prior to diagnosis, while impacts of GC/GT on treatment implications were secondary. Uncertainty regarding the personal relevance of GC/GT reflects the influence of personal knowledge on attitudes towards GC/GT, exemplifying the individual level of the SEM (McLeroy et al., 1988).

Findings in this study demonstrate that family dynamics and communication are influential in participants' awareness of GC/GT, reflecting the SEM level of interpersonal factors (McLeroy et al., 1988). Reflecting previous research, participants saw open familial communication as a facilitator to interest and uptake (Rogers et al., 2018). In contrast, participants who reported restricted familial communication and resultant ignorance of family cancer history discussed direct impacts to their own risk perception which, precluded them from seeking information about GC/GT. While understudied, this analysis aligns with prior research demonstrating that limited family health history communication is a barrier to cancer prevention measures, including pre-symptomatic GC/GT (Dickey et al., 2020; Kinney et al., 2010).

Participants in our study expressed that it was extremely important that their children and grandchildren have the information provided by GC/GT to help protect themselves from their own cancer diagnoses. This builds on existing evidence that the hope of protecting family from cancer is a significant facilitator of GC/GT (Greenberg et al., 2020; Rogers et al., 2018). Participants’ focus on the potential GC/GT implications for prevention and early detection, both personally and for family members, suggests that educational outreach aimed to increase Black individuals with PCa’s understanding of GC/GT’s potential to help prevent, detect, and treat cancer may improve awareness, interest, and uptake of GC/GT.

Our study’s participants reflected on the role that healthcare providers and institutions play in shaping attitudes towards GC/GT, especially in providing information about the personal and familial impact of genetics services. In line with previous studies, many participants felt they were either not made aware or were inadequately informed about GC/GT (Cohen et al., 2019). Additionally, a recent study found that physicians involved in PCa care desired additional knowledge and training to appropriately educate patients, and therefore increase uptake of GT (Loeb et al., 2021). These findings contribute to a more nuanced understanding of institutional barriers to genetics services and suggest an association between insufficient knowledge of GC/GT among providers and patients, with additional research required.

While trust in individual healthcare providers facilitated awareness, interest, and uptake of GC/GT, skepticism of healthcare as an institution was consistently discussed as a barrier. This finding is important as studies have shown that among Black women eligible for BRCA1/2 GT, increased mistrust in the medical system correlated with a lower likelihood to undergo GC/GT (Sheppard et al., 2013). While several participants reported current failures of healthcare institutions as fostering mistrust, only one participant explicitly mentioned historical maltreatment of Black populations as reasons behind medical mistrust. The data builds upon prior research indicating that contemporary abuses of the medical system may play a larger role in mistrust among Black populations (Hammond, 2010). These findings demonstrate that acknowledging and addressing current medical racism to improve healthcare trustworthiness is not beyond reach. Facilitating trust in patient-provider relationships, as well as promoting accountability for historical and current harms of medical institutions may be important in increasing awareness, interest, and uptake of GC/GT (Lumpkins et al., 2020; Rogers et al., 2018; Weise et al., 2022). These results should be considered when considering methods to improve outreach on the availability and utility of GC/GT in PCa care.

A significant finding of this study was the role community plays in interest and uptake of GC/GT, as well as in motivating research participation. This study builds on the existing evidence of altruism as a reason for participating in research, demonstrating that a desire to help the Black community may be a more significant motivator among Black individuals with PCa (Loeb et al., 2021; Lumpkins et al., 2020; Rogers et al., 2018). Participants also discussed the potential benefits to decrease PCa disparities as facilitating interest of GC/GT. While this study and others report medical mistrust among Black individuals affecting research participation and pursuit of GC/GT, this analysis suggests that the potential to benefit the Black community may outweigh wariness and skepticism of the medical system (Rogers et al., 2018). The motivating factor of community aligns with guiding principles of community-based participatory research: community as a unit of identity (Israel et al., 1998; Smith et al., 2015). These findings suggest a collective identity and connection to the Black community influencing personal goals of increasing awareness and reducing health disparities.

Although community was neither directly mentioned nor alluded to by the interviewer or in the semi-structured interview guide for this study, community dynamics and influence were discussed by a majority of participants. The unprompted discussion of community as an influence in awareness, interest, and uptake of GC/GT bolsters the strength of these unique findings. Fear, masculinity, generational differences, and prioritization of basic needs were associated with community dynamics of reluctance to discuss and seek genetics services and healthcare, including PCa care. These findings align with previous research suggesting that Black men may avoid discussing medical matters and delay seeking healthcare, especially related to PCa (Rogers et al., 2018; Woods et al., 2004). Other studies have suggested health information and messaging targeting the Black community could help facilitate discussion and awareness of PCa (Peterson et al., 2020). According to the SEM, community is an important mediator of health beliefs and behaviors (McLeroy et al., 1988). Our findings complement existing literature and theory demonstrating the importance of involving the Black community in initiatives increasing awareness, interest, and uptake of GC/GT.

Limited availability and dissemination of health education were suggested as structural hurdles barring awareness, interest, and uptake of GC/GT among Black individuals with PCa in this study. These findings contribute to existing research in health education disparities regarding genetic information and services (Ford & Airhihenbuwa, 2010b; Joseph et al., 2017; Rogers et al., 2018; Weise et al., 2022). Prior studies with Black women with breast cancer demonstrate gaps in dissemination of genetics information as well as a decreased likelihood of being referred to genetic counseling (Chapman-Davis et al., 2021; Padamsee et al., 2021; Peterson et al., 2020). In this study, many participants discussed inequitable access to healthcare, including genetics services, as related to social determinants of health such as insurance coverage, socioeconomic status, and neighborhood resources. Inequities in care, including deficient genetics education and access, are well documented for Black populations with other cancer types (Chapman-Davis et al., 2021; Joseph et al., 2017; Lumpkins et al., 2020). However, given the relatively recent initiation of genetics recommendations for PCa patients, there is insufficient data whether this is unique to Black patients with PCa. A recent study found that only 34.1% of patients with metastatic PCa underwent germline genetic testing, suggesting that access to GC/GT may be inadequate for all PCa patients (Aguiar et al., 2023). Additionally, with therapies reliant on GC/GT not currently being first-line treatment for PCa, this may affect the urgency, or lack thereof, with which providers educate about and refer to GC/GT for PCa patients. Ultimately, more research is needed to delineate the presence and depth of disparities in access to PCa GC/GT.

Overt interpersonal racism in seeking healthcare was not widely reported by participants, which they attributed to their individual financial or insurance statuses. Despite feeling comparatively fortunate due to these factors, participants discussed systemic racism as influencing other social determinants of health, as well as experiences with healthcare. While previous research has importantly focused on leveling the modifiable social determinants of health, these results demonstrate that this focus will be inadequate on its own (Weise et al., 2022). If racism is allowed to be ubiquitous in the structure of society, our findings suggest that disparities in GC/GT and healthcare will continue to exist. This analysis demonstrates the need for interventions that address systemic racism as a structural determinant of the social determinants of health to address inequities in genetic counseling, genetic testing for inherited cancer risk, and the healthcare system.

Limitations

As a qualitative study, a greater burden is placed on the researcher to select which data to emphasize. Additionally, as the principal investigator identifies as a white female, and consequently lacks the lived experience of Black individuals with PCa, this invites the possibility of implicit bias in the interpretation of results as a limitation of this study. To minimize these factors, the Public Health Critical Race principle of critical consciousness was employed (Ford & Airhihenbuwa, 2010a, 2010b). Reflection on the influence of identity, implicit bias, and power differentials was considered throughout the study design, data collection, and analysis. Additionally, per best qualitative research practice, the study findings were disseminated to participants, allowing them the chance to ensure their words were correctly represented and interpreted (Ford & Airhihenbuwa, 2010a, 2010b; Israel et al., 1998; Smith et al., 2015).

Though many essential themes emerged from this study, the small sample size due to difficulties with recruitment in a limited time frame is a notable limitation. Additionally, the majority of participants (62.5%) having a family history of PCa in a FDR, compared to approximately 22% of PCa patients overall with a family history of PCa in a FDR, may represent an ascertainment selection bias skewing responses in this study. All participants were diagnosed and/or treated at an academic medical center and geographically located in urban or suburban communities of major United States cities, which may limit the generalizability of these results. Thus, the limited diversity of residence and medical facility associations may have influenced the results of this study. Future studies should include further studies among Black individuals with PCa who reside in rural locations as well as those diagnosed and treated at community or public hospital systems. Additionally, few participants reported having concerns regarding GC/GT, which contrasts with studies among patients with PCa as well as other cancer types. Further research is needed to delineate PCa patients’ concerns and perceived risks of undergoing GC/GT.

Despite these limitations, this study has many strengths, including being the first qualitative study to explore perspectives of GC/GT among Black individuals with PCa. The current study’s findings also introduce many avenues for future research and implementation into clinical practice. Expanding this research to learn more about genetic information preferences among Black individuals with PCa could give new insight into eliminating gaps in the dissemination of health education. Additionally, future studies should account for our significant findings regarding potential community benefits as a motivator for GC/GT pursuit and research participation. This analysis indicates that community-based participatory research would be an effective avenue to increase awareness, interest, and uptake of GC/GT. In working towards the elimination of PCa and GC/GT disparities, the individual, interpersonal, institutional, community, and structural contexts in which PCa patients exist must be accounted for in the design and implementation of interventions.

Exploring the perspectives among Black individuals with PCa indicates that awareness, interest, and uptake of GC/GT are affected by multiple levels of influence. With facilitators and barriers at the individual, interpersonal, institutional, community, and public policy levels, this study highlights the need for multilevel interventions to address inequities in health education and access to genetics services. Communicating personal relevance and familial implications of GC/GT, facilitating healthcare provider genetics knowledge and trustful patient-provider relationships, drawing on potential community benefits, and addressing systemic barriers could maximize the use of GC/GT. The role of community in increasing interest in GC/GT, uptake of GC/GT, and motivating research participation demonstrates the importance of involving the Black PCa patient community in developing future interventions. Acknowledging and dismantling the barriers PCa patients face, as well as understanding facilitators and considering individual patient attitudes could increase utility and efficacy of GC/GT, and therefore, potentially help to alleviate the disproportionate burden of PCa on Black populations.

Conflict of Interest: Author BMS is a Consultant for UroGPO, Clovis Oncology, Janssen Oncology and Honorarium from AUA and Invitae. Scientific Advisory Board member for the TARGET study. Author DD is a Consultant for the Centers for Disease Control and Prevention, Division of Cancer Prevention and Control, and the Genetic Testing Advisory Board for AIM/Carelon; Honorarium for Facing Our Risk of Cancer Empowered (FORCE) for the XRAYS study, and Natera's Hereditary Cancer Advisory Board. Author AER is a Consultant for Astellas, Bayer, Blue Earth, Janssen Oncology, Pfizer, Myovant, Veracyte, Lantheus and Honorarium form the American Urological Association and National Comprehensive Cancer Network. Authors BP, SEG, and ABM have no conflicts of interest to report.

Ethics Approval: All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. The study protocol was reviewed and granted an exemption by the Northwestern University Institutional Review Board, STU#00215981.

Consent to Participate: Verbal informed consent was obtained from participants to participate in the study, written informed consent was not required as the study protocol was deemed exempt by the Northwestern University Institutional Review Board.

Data Availability: The data that support the findings of this study are not publicly available due to their containing information that could compromise the privacy of the research participants but are available from the corresponding author upon reasonable request.

Funding: This study was conducted when the principal author was a student of the Genetic Counseling Graduate Program, Feinberg School of Medicine, Northwestern University, Chicago, IL, U.S.A., and was funded by the Northwestern University Genetic Counseling Graduate Program. The study was also funded by the Amy Stein Schechtman Genetic Counseling Thesis Scholarship. Funding from these sources provided compensation of study participants.

Acknowledgements

The authors acknowledge the Amy Stein Schechtman Genetic Counseling Thesis Scholarship and the Beth Fine Kaplan Genetic Counseling Research Award for their support. The authors thank Jalessia L. Green for their assistance and input in reviewing and piloting the interview guide and reviewing earlier drafts of the manuscript, as well as Kyra Hartley for their assistance in piloting the interview guide.

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Competing interest reported. Author BMS is a Consultant for UroGPO, Clovis Oncology, Janssen Oncology and Honorarium from AUA and Invitae. Scientific Advisory Board member for the TARGET study. Author DD is a Consultant for the Centers for Disease Control and Prevention, Division of Cancer Prevention and Control, and the Genetic Testing Advisory Board for AIM/Carelon; Honorarium for Facing Our Risk of Cancer Empowered (FORCE) for the XRAYS study, and Natera's Hereditary Cancer Advisory Board. Author AER is a Consultant for Astellas, Bayer, Blue Earth, Janssen Oncology, Pfizer, Myovant, Veracyte, Lantheus and Honorarium form the American Urological Association and National Comprehensive Cancer Network. Authors BP, SEG, and ABM have no conflicts of interest to report.

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You are reading this latest preprint version

“Hope at a Better Chance”: Perspectives on Genetic Counseling and Testing among Black Individuals with Prostate Cancer

Status:

Version 1

Abstract

Introduction:

Methods

Results

Discussion

Figures

Introduction

Methods

Study Design

Participant Selection

Data Collection

Data Analysis

Results

Overview

Theme 1: Uncertainty Surrounding Personal Relevance of GC/GT

SEM Level: Individual Factors

Theme 2: Family Influence and Impact of GC/GT

SEM Level: Interpersonal Factors

Theme 3: Healthcare Providers and Institutions as Gatekeepers of GC/GT

SEM Level: Institutional Factors

Theme 4: Community Identity, Influence, and Impact of GC/GT

SEM Level: Community Factors

Theme 5: Systemic Barriers to GC/GT Exemplify Larger Structural Constraints

SEM Level: Public Policy Factors

Discussion

Limitations

Conclusion

Declarations

References

Additional Declarations

Status:

Version 1