Abstract

Background

Polygenic risk scores (PRS) hold promise for early lung cancer detection and personalized treatment, yet factors influencing patient interest in PRS-based genetic testing are not well understood.

Purpose

Grounded in the health belief model, this mixed-methods study explored knowledge, attitudes, perceived benefits and barriers to lung cancer PRS, and preferences for receiving PRS results.

Results

The study included 141 individuals (41% African American, 63% female) recruited from two hospital affiliates of a comprehensive cancer center in the Southwestern United States. Although participants recognized the severity of lung cancer, knowledge of PRS was limited. Concerns about privacy, psychological impacts, and uncertainty about result usefulness diminished interest in genetic testing for polygenic risk. Significant differences (P < .05) in attitudes were observed: women expressed heightened concerns about psychological effects, and African Americans reported greater perceptions of stigma and concerns about potential familial consequences. Qualitative findings emphasized the psychological burden of learning one’s genetic risk, particularly among those with family cancer histories or smoking exposure. Participants emphasized the need for clear, actionable results and assurances of data privacy.

Conclusions

Perceived benefits and barriers to PRS-based testing varied by sociodemographic and personal risk factors, with concerns about stigma, psychological burden, and privacy shaping attitudes. Given participants’ emphasis on clear, actionable results, strategies to enhance uptake should improve risk communication, ensure data privacy, and provide guidance on risk-reducing actions. Tailored approaches addressing subgroup-specific concerns may improve diverse patient engagement and equitable access to PRS.

Introduction

Lung cancer is a global health challenge, causing high morbidity and mortality.1 In the United States, it is the leading cause of cancer death, with an estimated 23,580 new cases and 125,070 deaths in 2024.2 Despite advances in care, racial disparities persist.3 African American men have the highest lung cancer incidence and mortality rates among all racial groups, and African American women, despite having lower lung cancer incidence rates than White women, face worse 5-year relative survival rates compared to White women and women of other races.4,5 These disparities result from factors such as smoking behaviors, healthcare access, socioeconomic status, environmental exposures, and genetic variations,6–8 highlighting the need for early detection and targeted interventions.

Benefits and challenges of polygenic risk scores (PRS) in lung cancer care

Polygenic risk scores (PRS), which use multiple genetic variants to provide personalized risk assessments, offer a promising approach to improving cancer care.9 While clinical use is limited, interest in PRS is growing due to potential benefits at both individual and population levels. At the individual level, PRS could refine risk prediction, improve counseling, and streamline diagnostics, enabling more personalized care. At the population level, they could support risk stratification and primary and secondary prevention efforts.10 In lung cancer specifically, PRS could help identify high-risk individuals—such as those who smoke or have a family history—for earlier screening or targeted prevention. They also have the potential to guide treatment decisions, enhancing efficacy while minimizing side effects.11

Before PRS can be widely implemented in clinical practice, several key challenges must be addressed. A major challenge is ensuring PRS accuracy across diverse populations. Most genome-wide association studies have focused on individuals of European descent, limiting predictive accuracy for non-European populations and exacerbating health disparities. Without equitable implementation, PRS could further widen disparities in lung cancer outcomes by disproportionately benefiting those with greater access to genetic testing and precision medicine. Expanding diversity in genetic research is crucial to ensure PRS benefits all populations equitably.12

Effectively integrating PRS into clinical care also requires careful consideration of how results are communicated. Misinterpretation of risk can lead to confusion, worry, or poor adherence to medical recommendations.13 Given that patients’ knowledge and perceptions can influence their healthcare decisions, including whether they pursue genetic testing or follow risk-based recommendations, clear and accessible communication is essential.14,15 In lung cancer, where early detection is critical for improving outcomes,16 effective communication of PRS results is particularly important to ensure patients and providers can make informed decisions. However, if patients are hesitant to undergo genetic testing or misunderstand their results, the potential clinical utility of PRS may be diminished, limiting its potential to guide personalized prevention and treatment strategies.

Little is currently known about how lung cancer patients perceive PRS, which is an important gap given the stigma associated with lung cancer and its potential impact on risk perception and screening behaviors. Research in breast and colorectal cancers suggests that while some patients appreciate the personalized insights PRS provides, others express concerns about privacy, discrimination, and the psychological burden of genetic risk information.17 In the context of lung cancer, where stigma is closely tied to smoking history, PRS feedback may reinforce deterministic beliefs, overemphasizing genetic risk while overlooking behavioral (eg, smoking) and social determinants, potentially exacerbating stigma and discrimination and influencing screening decisions.18 Addressing these concerns will require research to better understand lung cancer patient perceptions and the development of strategies for presenting PRS findings in ways that foster informed, proactive engagement and avoid oversimplification.19

Another challenge is that although PRS-based interventions are being explored in cancer,20 their clinical utility remains unproven,21,22 with more translational research needed to clarify their role in guiding treatment and prevention strategies. Even as this research advances, access to PRS remains limited, often confined to research settings or clinics targeting high-risk individuals for precision healthcare.23 Access is typically influenced by provider recommendations, cost, availability of testing infrastructure, and patient eligibility based on clinical risk factors or guidelines.24 Broader adoption is constrained by systematic barriers, including inequities in access to care, limited provider understanding, and social determinants of health.25 To ensure PRS achieves its potential, equitable strategies are needed to integrate it into diverse healthcare settings and expand access to underserved populations.26

Sociodemographic and personal risk factors influencing attitudes toward PRS

Attitudes toward genomic testing and PRS may differ between African American and White populations due to distinct social, cultural, and historical experiences in the United States. Medical mistrust, experiences of discrimination, and health literacy disparities may contribute to lower PRS participation among African Americans.27 Smoking status and gender differences in risk perception may also influence susceptibility and testing decisions.28 Further research is needed to clarify these associations and inform interventions that promote equitable access.

Health belief model (HBM) factors and attitudes toward PRS

The HBM provides a potentially useful framework for understanding individual-level factors that drive PRS testing.29 It focuses on four key perceptions—susceptibility, severity, benefits, and barriers—offering a focused understanding of personal health beliefs. Unlike other models like the theory of planned behavior or socioecological frameworks, the HBM provides a more targeted analysis of individual cognitive processes that influence health behaviors,30 making it especially suitable for scenarios such as PRS testing for lung cancer, where personal beliefs and perceived risks may be linked to decision-making. Research shows that higher perceived risk, severity, and benefits, as well as lower perceived barriers are associated with participation in cancer screening.31,32 These findings underscore the utility of the HBM in identifying cognitive factors that may shape individuals’ decisions about undergoing PRS testing for lung cancer.

Study objectives

This mixed-methods study explored key HBM constructs related to lung cancer and PRS, including perceived severity and susceptibility, as well as the perceived benefits and barriers of PRS testing and result return. In addition, the study explored PRS-related knowledge and attitudes, including worry about lung cancer and interest in PRS. By combining quantitative and qualitative data, the study aimed to identify key factors shaping PRS-related perceptions and engagement. It also explored how sociodemographic factors and personal health behaviors (ie, smoking history) influence HBM constructs, PRS knowledge, and PRS attitudes. Understanding these differences is crucial for developing targeted interventions to enhance engagement with PRS and support informed decision-making, with the broader goal of improving participation in genetic testing and addressing lung cancer disparities.

Materials and methods

Study design and setting

This IRB-approved study was conducted at a comprehensive cancer center in the Southwestern United States with public safety net and private practice hospital affiliates. A concurrent embedded mixed-methods design was employed, combining quantitative (forced-choice, Likert-style questions) and qualitative (free-response) data.33 This approach allows for examining both general trends through quantitative data and deeper personal perspectives through qualitative data.34,35 A cross-sectional survey was first administered in the clinic to assess sociodemographics, perceptions, and attitudes toward lung cancer PRS testing. Follow-up phone interviews were conducted to provide deeper insight into participants’ personal experiences and the reasons behind their attitudes and perceptions.

Participant recruitment and data collection

Participants were recruited from the waiting rooms of the pulmonary and general internal medicine clinics to ensure a diverse patient population. Eligibility criteria included self-identifying as African American or White, being over 18 years old, fluency in English, and the ability to provide informed consent. Eligible individuals provided written consent and typically completed the survey via REDCap on a tablet and the interview at recruitment. If time was limited, interviews were scheduled and conducted by phone. All interviews were recorded and transcribed. Participants received a $20 gift card for the survey and a $30 gift card for the interview.

Measures

Sociodemographics and health history

Sociodemographic information collected from participants included gender, self-identified race and ethnicity, educational attainment, age, and employment status. Smoking status was assessed with a one-item question categorizing participants as persons who never smoked, formerly smoked (quit date ≥ 6 months), recently quit (quit date ≤ 6 months), or who currently smoked. In addition, we assessed history of lung disease (yes/no), family history of cancer (yes/no), whether a healthcare provider ever discussed genetic testing for cancer risk with them (yes/no), and whether the individual had read or heard media reports about genetic testing for cancer risk (yes/no).

HBM constructs

Given the absence of validated instruments specific to PRS and lung cancer, the study team developed tailored survey items grounded in the HBM. This process involved a comprehensive literature review and consultations with experts in health psychology and genetic counseling to ensure the items’ relevance and theoretical alignment.

Perceived severity. One item assessed lung cancer’s severity on a Likert-type scale from 1 (not serious) to 5 (extremely serious).

Perceived susceptibility. Participants were asked to compare their lung cancer risk to others their age (1 = much less to 5 = much higher) and estimate their chances of developing lung cancer (0 = no chance to 10 = 100%).

Perceived benefits. Seven items assessed the benefits of knowing the polygenic risk, such as reducing uncertainty and informing family, health decisions, and behaviors (1 = not at all beneficial to 5 = very beneficial).

Perceived barriers. Ten items assessed negative consequences of knowing the polygenic risk, including psychological distress, family conflict, stigma, and potential misuse by third parties (eg, employment, insurance). Items were rated on a 5-point Likert scale, with higher scores indicating greater endorsement.

PRS knowledge and attitudes

Knowledge of genetic testing for cancer risk, worry about developing lung cancer, and interest in PRS testing were assessed using single-item measures on 5-point Likert scales where higher scores indicated greater endorsement.

Interviews

An interview guide (see Supplementary Appendix 1) was developed based on the following domains of interest: (1) knowledge about lung cancer and polygenic risk, (2) perceived severity of lung cancer, (3) perceived utility of PRS for lung cancer and value of participation in lung cancer genomic testing for polygenic risk, (4) barriers to participation, and (5) preferences regarding return of results.

Data analysis

Quantitative. Descriptive statistics were calculated as means (M) and standard deviations (SD) for continuous variables, and absolute (n) and relative (%) frequencies for categorical variables. Independent samples t-tests assessed differences in perceptions and attitudes across gender, race, and smoking status. Cohen’s d was calculated for all significant group differences as a measure of effect size. Due to the small number of persons who currently smoked or recently quit, they were combined with persons who formerly smoked to form a “persons with a history of smoking” category for comparisons with persons who never smoked. Analyses examined group differences in perceived severity, susceptibility, knowledge, interest, and perceived benefits and barriers to PRS testing. Bivariate correlations assessed associations between HBM constructs and PRS-related knowledge, worry, and interest.

Qualitative. Using the HBM and interview guide, an initial codebook was developed to streamline thematic analysis. Interview transcripts were imported into Atlas.ti, for coding. Three trained coders (CI, HW, MT) independently applied the codebook, with all interviews double-coded to ensure reliability. The inter-coder agreement was assessed through iterative discussions, and discrepancies were resolved through recursive comparison and codebook refinement. Regular team meetings maintained coding consistency and ensured a rigorous analytic approach.

Mixed-methods integration. In the interpretation phase, we used an embedded convergent approach, where qualitative data were used to deepen our understanding of patterns from the quantitative analysis.36 Qualitative data were also quantified (eg, through counts and percentages) when applicable. In the reporting phase, we integrated quantitative and qualitative findings using a narrative approach, weaving together statistical outcomes with quotes and themes from interviews.

Results

Quantitative results

Sample characteristics. The sample included 141 participants, with 63.1% identifying as female and 58.9% as White. A total of 73.8% were college-educated, and 33.3% were employed. Regarding smoking, 7.0% currently smoked, 22.0% formerly smoked, 1.0% had recently quit smoking, and 70.0% never smoked. Lung disease was reported by 26.2%, and 21.3% had a family history of cancer.

Perceptions of lung cancer severity, susceptibility, and PRS testing. Participants viewed lung cancer as a severe disease, with a high mean severity rating of 4.24 (SD = 1.34). Perceived susceptibility to lung cancer was moderate, with a mean score of 3.44 (SD = 2.48). Knowledge of lung cancer PRS was low (M = 0.36, SD = 0.48). Interest in genetic testing for lung cancer risk was moderate (M = 3.41, SD = 1.20). The top perceived benefits of genetic testing were aiding research (M = 4.05, SD = 1.01), guiding health decisions (M = 4.02, SD = 1.05), and planning for the future (M = 3.93, SD = .98). The main barriers were concerns about life insurance (M = 3.52, SD = 1.30), health insurance (M = 3.40, SD = 1.33), and potential psychological distress (M = 3.01, SD = 1.07). Differences in perceptions based on gender, race, and smoking history are detailed in Table 1 and below.

Table 1

| Comparison of perceptions, knowledge, and attitudes toward lung cancer and PRS based on gender, race, and smoking history.

GenderRaceSmoking history
VariableOverall mean (SD)Men mean (SD)Women mean (SD)tdAfrican American mean (SD)White mean (SD)tdSmoking history mean (SD)Never smoked mean (SD)td
Perceived severity of lung cancer
Please rate the severity of lung cancer4.24 (1.34)4.13 (1.36)4.37 (1.27)−0.780.554.48 (1.12)4.26 (1.34)0.784.24 (1.17)4.29 (1.37)−0.15
Perceived susceptibility to lung cancer
Compared with others your age, what do you think your chances are of being diagnosed with lung cancer?2.72 (1.20)3.13 (1.01)2.50 (1.23)2.38*2.68 (1.19)2.80 (1.22)−0.453.33 (1.01)2.45 (1.17)3.20***0.80
Perceived benefits of PRS
Removal of uncertainty3.87 (0.97)3.71 (0.97)4.02 (0.88)−1.483.78 (1.10)4.00 (0.81)−1.023.88 (0.88)3.93 (0.95)−0.22
Provision of information for children3.80 (1.15)3.57 (1.17)4.00 (1.06)−1.713.74 (1.21)3.89 (1.07)−0.583.60 (1.16)3.96 (1.09)−1.36
Provision of information for other family members3.87 (1.11)3.53 (1.25)4.12 (0.89)−2.45*0.523.94 (1.11)3.87 (1.07)0.273.50 (1.35)4.07 (0.89)−2.23*0.52
Provision of information to guide health decision-making4.02 (1.05)3.94 (1.09)4.14 (0.94)−0.893.81 (1.06)4.23 (0.94)−1.864.00 (1.08)4.11 (0.97)−0.44
May help research into this illness4.05 (1.01)4.03 (1.02)4.12 (0.93)−0.393.91 (0.96)4.19 (0.95)−1.313.96 (1.06)4.16 (0.91)−0.87
Provision of information to guide health behaviors3.94 (1.02)3.83 (0.99)4.06 (0.96)−1.023.84 (0.85)4.09 (1.06)−1.083.88 (0.99)4.04 (0.96)−0.68
Allows improved basis for planning for the future3.93 (0.98)3.87 (1.07)4.02 (0.84)−0.713.88 (0.87)4.04 (0.99)−0.783.88 (0.93)4.02 (0.93)−0.62
Perceived barriers to genetic testing for polygenic risk
Psychological distress3.01 (1.07)2.77 (0.88)3.17 (1.15)−1.663.12 (1.19)2.91 (1.00)0.842.80 (1.00)3.12 (1.10)−1.25
Family conflict2.41 (1.10)2.16 (1.04)2.58 (1.13)−1.682.81 (1.01)2.15 (1.08)2.69**0.642.12 (1.13)2.55 (1.09)−1.60
Unnecessary treatment2.81 (1.06)2.81 (0.98)2.84 (1.10)−0.153.03 (1.12)2.66 (0.96)1.582.64 (1.00)2.93 (1.08)−1.14
Results could be inaccurate3.05 (1.01)2.90 (0.98)3.18 (0.98)−1.233.29 (0.97)2.94 (0.92)1.633.00 (1.00)3.11 (0.99)−0.45
Results may have negative impact on my family2.65 (1.16)2.61 (1.15)2.71 (1.17)−0.353.16 (1.02)2.32 (1.14)3.33***0.802.36 (1.22)2.79 (1.11)−1.55
If the results show that I have a genetic risk, there is nothing I can do to affect my risk2.66 (1.25)2.65 (1.28)2.71 (1.24)−0.213.09 (1.20)2.43 (1.23)2.39*0.542.44 (1.26)2.79 (1.25)−1.15
Limited employment opportunities2.70 (1.23)2.55 (1.15)2.82 (1.26)−0.962.81 (1.01)2.66 (1.37)0.512.88 (1.26)2.65 (1.22)0.73
Barriers to obtaining life insurance coverage3.52 (1.30)3.34 (1.34)3.67 (1.23)−1.113.45 (1.03)3.64 (1.45)−0.623.54 (1.32)3.57 (1.28)−0.10
Barriers to obtaining private health insurance coverage3.40 (1.33)3.07 (1.34)3.60 (1.30)−1.763.22 (1.10)3.51 (1.50)−0.943.42 (1.32)3.39 (1.36)0.09
Social stigma2.36 (1.14)2.20 (1.10)2.44 (1.18)−0.922.73 (1.04)2.07 (1.14)2.64**0.602.29 (1.20)2.37 (1.14)−0.27
Knowledge
How much have you heard about genetic testing for lung cancer risk?0.36 (0.48)0.39 (0.50)0.33 (0.48)0.490.44 (0.50)0.30 (0.46)1.270.40 (0.50)0.32 (0.47)0.68
Worry
To what degree do you worry about getting lung cancer?1.43 (0.74)1.42 (0.72)1.45 (0.77)−0.171.60 (0.93)1.34 (0.60)1.491.76 (1.01)1.28 (0.53)2.79**0.59
Interest
How interested would you be in taking a one-time genetic test for lung cancer risk?3.41 (1.20)3.48 (1.12)3.37 (1.25)0.433.15 (1.33)3.57 (1.10)−1.563.56 (1.08)3.35 (1.26)0.72
GenderRaceSmoking history
VariableOverall mean (SD)Men mean (SD)Women mean (SD)tdAfrican American mean (SD)White mean (SD)tdSmoking history mean (SD)Never smoked mean (SD)td
Perceived severity of lung cancer
Please rate the severity of lung cancer4.24 (1.34)4.13 (1.36)4.37 (1.27)−0.780.554.48 (1.12)4.26 (1.34)0.784.24 (1.17)4.29 (1.37)−0.15
Perceived susceptibility to lung cancer
Compared with others your age, what do you think your chances are of being diagnosed with lung cancer?2.72 (1.20)3.13 (1.01)2.50 (1.23)2.38*2.68 (1.19)2.80 (1.22)−0.453.33 (1.01)2.45 (1.17)3.20***0.80
Perceived benefits of PRS
Removal of uncertainty3.87 (0.97)3.71 (0.97)4.02 (0.88)−1.483.78 (1.10)4.00 (0.81)−1.023.88 (0.88)3.93 (0.95)−0.22
Provision of information for children3.80 (1.15)3.57 (1.17)4.00 (1.06)−1.713.74 (1.21)3.89 (1.07)−0.583.60 (1.16)3.96 (1.09)−1.36
Provision of information for other family members3.87 (1.11)3.53 (1.25)4.12 (0.89)−2.45*0.523.94 (1.11)3.87 (1.07)0.273.50 (1.35)4.07 (0.89)−2.23*0.52
Provision of information to guide health decision-making4.02 (1.05)3.94 (1.09)4.14 (0.94)−0.893.81 (1.06)4.23 (0.94)−1.864.00 (1.08)4.11 (0.97)−0.44
May help research into this illness4.05 (1.01)4.03 (1.02)4.12 (0.93)−0.393.91 (0.96)4.19 (0.95)−1.313.96 (1.06)4.16 (0.91)−0.87
Provision of information to guide health behaviors3.94 (1.02)3.83 (0.99)4.06 (0.96)−1.023.84 (0.85)4.09 (1.06)−1.083.88 (0.99)4.04 (0.96)−0.68
Allows improved basis for planning for the future3.93 (0.98)3.87 (1.07)4.02 (0.84)−0.713.88 (0.87)4.04 (0.99)−0.783.88 (0.93)4.02 (0.93)−0.62
Perceived barriers to genetic testing for polygenic risk
Psychological distress3.01 (1.07)2.77 (0.88)3.17 (1.15)−1.663.12 (1.19)2.91 (1.00)0.842.80 (1.00)3.12 (1.10)−1.25
Family conflict2.41 (1.10)2.16 (1.04)2.58 (1.13)−1.682.81 (1.01)2.15 (1.08)2.69**0.642.12 (1.13)2.55 (1.09)−1.60
Unnecessary treatment2.81 (1.06)2.81 (0.98)2.84 (1.10)−0.153.03 (1.12)2.66 (0.96)1.582.64 (1.00)2.93 (1.08)−1.14
Results could be inaccurate3.05 (1.01)2.90 (0.98)3.18 (0.98)−1.233.29 (0.97)2.94 (0.92)1.633.00 (1.00)3.11 (0.99)−0.45
Results may have negative impact on my family2.65 (1.16)2.61 (1.15)2.71 (1.17)−0.353.16 (1.02)2.32 (1.14)3.33***0.802.36 (1.22)2.79 (1.11)−1.55
If the results show that I have a genetic risk, there is nothing I can do to affect my risk2.66 (1.25)2.65 (1.28)2.71 (1.24)−0.213.09 (1.20)2.43 (1.23)2.39*0.542.44 (1.26)2.79 (1.25)−1.15
Limited employment opportunities2.70 (1.23)2.55 (1.15)2.82 (1.26)−0.962.81 (1.01)2.66 (1.37)0.512.88 (1.26)2.65 (1.22)0.73
Barriers to obtaining life insurance coverage3.52 (1.30)3.34 (1.34)3.67 (1.23)−1.113.45 (1.03)3.64 (1.45)−0.623.54 (1.32)3.57 (1.28)−0.10
Barriers to obtaining private health insurance coverage3.40 (1.33)3.07 (1.34)3.60 (1.30)−1.763.22 (1.10)3.51 (1.50)−0.943.42 (1.32)3.39 (1.36)0.09
Social stigma2.36 (1.14)2.20 (1.10)2.44 (1.18)−0.922.73 (1.04)2.07 (1.14)2.64**0.602.29 (1.20)2.37 (1.14)−0.27
Knowledge
How much have you heard about genetic testing for lung cancer risk?0.36 (0.48)0.39 (0.50)0.33 (0.48)0.490.44 (0.50)0.30 (0.46)1.270.40 (0.50)0.32 (0.47)0.68
Worry
To what degree do you worry about getting lung cancer?1.43 (0.74)1.42 (0.72)1.45 (0.77)−0.171.60 (0.93)1.34 (0.60)1.491.76 (1.01)1.28 (0.53)2.79**0.59
Interest
How interested would you be in taking a one-time genetic test for lung cancer risk?3.41 (1.20)3.48 (1.12)3.37 (1.25)0.433.15 (1.33)3.57 (1.10)−1.563.56 (1.08)3.35 (1.26)0.72

Notes: *P ≤ .05, **P ≤ .01, ***P ≤ .001.

Perceived severity: Rated on a 5-point Likert scale from 1 (not serious) to 5 (extremely serious).

Perceived susceptibility: Rated on a 5-point Likert scale from 1 (much less) to 5 (much higher).

Perceived benefits: Rated on a 5-point Likert scale from 1 (not at all beneficial) to 5 (very beneficial).

Perceived barriers: Rated on a 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree).

Worry: Rated on a 5-point Likert scale from 1 (not at all worried) to 5 (extremely worried).

Knowledge: Rated on a 5-point Likert scale from 1 (no information) to 5 (a lot of information).

Interest: Rated on a 5-point Likert scale from 1 (not at all interested) to 5 (very interested).

Table 1

| Comparison of perceptions, knowledge, and attitudes toward lung cancer and PRS based on gender, race, and smoking history.

GenderRaceSmoking history
VariableOverall mean (SD)Men mean (SD)Women mean (SD)tdAfrican American mean (SD)White mean (SD)tdSmoking history mean (SD)Never smoked mean (SD)td
Perceived severity of lung cancer
Please rate the severity of lung cancer4.24 (1.34)4.13 (1.36)4.37 (1.27)−0.780.554.48 (1.12)4.26 (1.34)0.784.24 (1.17)4.29 (1.37)−0.15
Perceived susceptibility to lung cancer
Compared with others your age, what do you think your chances are of being diagnosed with lung cancer?2.72 (1.20)3.13 (1.01)2.50 (1.23)2.38*2.68 (1.19)2.80 (1.22)−0.453.33 (1.01)2.45 (1.17)3.20***0.80
Perceived benefits of PRS
Removal of uncertainty3.87 (0.97)3.71 (0.97)4.02 (0.88)−1.483.78 (1.10)4.00 (0.81)−1.023.88 (0.88)3.93 (0.95)−0.22
Provision of information for children3.80 (1.15)3.57 (1.17)4.00 (1.06)−1.713.74 (1.21)3.89 (1.07)−0.583.60 (1.16)3.96 (1.09)−1.36
Provision of information for other family members3.87 (1.11)3.53 (1.25)4.12 (0.89)−2.45*0.523.94 (1.11)3.87 (1.07)0.273.50 (1.35)4.07 (0.89)−2.23*0.52
Provision of information to guide health decision-making4.02 (1.05)3.94 (1.09)4.14 (0.94)−0.893.81 (1.06)4.23 (0.94)−1.864.00 (1.08)4.11 (0.97)−0.44
May help research into this illness4.05 (1.01)4.03 (1.02)4.12 (0.93)−0.393.91 (0.96)4.19 (0.95)−1.313.96 (1.06)4.16 (0.91)−0.87
Provision of information to guide health behaviors3.94 (1.02)3.83 (0.99)4.06 (0.96)−1.023.84 (0.85)4.09 (1.06)−1.083.88 (0.99)4.04 (0.96)−0.68
Allows improved basis for planning for the future3.93 (0.98)3.87 (1.07)4.02 (0.84)−0.713.88 (0.87)4.04 (0.99)−0.783.88 (0.93)4.02 (0.93)−0.62
Perceived barriers to genetic testing for polygenic risk
Psychological distress3.01 (1.07)2.77 (0.88)3.17 (1.15)−1.663.12 (1.19)2.91 (1.00)0.842.80 (1.00)3.12 (1.10)−1.25
Family conflict2.41 (1.10)2.16 (1.04)2.58 (1.13)−1.682.81 (1.01)2.15 (1.08)2.69**0.642.12 (1.13)2.55 (1.09)−1.60
Unnecessary treatment2.81 (1.06)2.81 (0.98)2.84 (1.10)−0.153.03 (1.12)2.66 (0.96)1.582.64 (1.00)2.93 (1.08)−1.14
Results could be inaccurate3.05 (1.01)2.90 (0.98)3.18 (0.98)−1.233.29 (0.97)2.94 (0.92)1.633.00 (1.00)3.11 (0.99)−0.45
Results may have negative impact on my family2.65 (1.16)2.61 (1.15)2.71 (1.17)−0.353.16 (1.02)2.32 (1.14)3.33***0.802.36 (1.22)2.79 (1.11)−1.55
If the results show that I have a genetic risk, there is nothing I can do to affect my risk2.66 (1.25)2.65 (1.28)2.71 (1.24)−0.213.09 (1.20)2.43 (1.23)2.39*0.542.44 (1.26)2.79 (1.25)−1.15
Limited employment opportunities2.70 (1.23)2.55 (1.15)2.82 (1.26)−0.962.81 (1.01)2.66 (1.37)0.512.88 (1.26)2.65 (1.22)0.73
Barriers to obtaining life insurance coverage3.52 (1.30)3.34 (1.34)3.67 (1.23)−1.113.45 (1.03)3.64 (1.45)−0.623.54 (1.32)3.57 (1.28)−0.10
Barriers to obtaining private health insurance coverage3.40 (1.33)3.07 (1.34)3.60 (1.30)−1.763.22 (1.10)3.51 (1.50)−0.943.42 (1.32)3.39 (1.36)0.09
Social stigma2.36 (1.14)2.20 (1.10)2.44 (1.18)−0.922.73 (1.04)2.07 (1.14)2.64**0.602.29 (1.20)2.37 (1.14)−0.27
Knowledge
How much have you heard about genetic testing for lung cancer risk?0.36 (0.48)0.39 (0.50)0.33 (0.48)0.490.44 (0.50)0.30 (0.46)1.270.40 (0.50)0.32 (0.47)0.68
Worry
To what degree do you worry about getting lung cancer?1.43 (0.74)1.42 (0.72)1.45 (0.77)−0.171.60 (0.93)1.34 (0.60)1.491.76 (1.01)1.28 (0.53)2.79**0.59
Interest
How interested would you be in taking a one-time genetic test for lung cancer risk?3.41 (1.20)3.48 (1.12)3.37 (1.25)0.433.15 (1.33)3.57 (1.10)−1.563.56 (1.08)3.35 (1.26)0.72
GenderRaceSmoking history
VariableOverall mean (SD)Men mean (SD)Women mean (SD)tdAfrican American mean (SD)White mean (SD)tdSmoking history mean (SD)Never smoked mean (SD)td
Perceived severity of lung cancer
Please rate the severity of lung cancer4.24 (1.34)4.13 (1.36)4.37 (1.27)−0.780.554.48 (1.12)4.26 (1.34)0.784.24 (1.17)4.29 (1.37)−0.15
Perceived susceptibility to lung cancer
Compared with others your age, what do you think your chances are of being diagnosed with lung cancer?2.72 (1.20)3.13 (1.01)2.50 (1.23)2.38*2.68 (1.19)2.80 (1.22)−0.453.33 (1.01)2.45 (1.17)3.20***0.80
Perceived benefits of PRS
Removal of uncertainty3.87 (0.97)3.71 (0.97)4.02 (0.88)−1.483.78 (1.10)4.00 (0.81)−1.023.88 (0.88)3.93 (0.95)−0.22
Provision of information for children3.80 (1.15)3.57 (1.17)4.00 (1.06)−1.713.74 (1.21)3.89 (1.07)−0.583.60 (1.16)3.96 (1.09)−1.36
Provision of information for other family members3.87 (1.11)3.53 (1.25)4.12 (0.89)−2.45*0.523.94 (1.11)3.87 (1.07)0.273.50 (1.35)4.07 (0.89)−2.23*0.52
Provision of information to guide health decision-making4.02 (1.05)3.94 (1.09)4.14 (0.94)−0.893.81 (1.06)4.23 (0.94)−1.864.00 (1.08)4.11 (0.97)−0.44
May help research into this illness4.05 (1.01)4.03 (1.02)4.12 (0.93)−0.393.91 (0.96)4.19 (0.95)−1.313.96 (1.06)4.16 (0.91)−0.87
Provision of information to guide health behaviors3.94 (1.02)3.83 (0.99)4.06 (0.96)−1.023.84 (0.85)4.09 (1.06)−1.083.88 (0.99)4.04 (0.96)−0.68
Allows improved basis for planning for the future3.93 (0.98)3.87 (1.07)4.02 (0.84)−0.713.88 (0.87)4.04 (0.99)−0.783.88 (0.93)4.02 (0.93)−0.62
Perceived barriers to genetic testing for polygenic risk
Psychological distress3.01 (1.07)2.77 (0.88)3.17 (1.15)−1.663.12 (1.19)2.91 (1.00)0.842.80 (1.00)3.12 (1.10)−1.25
Family conflict2.41 (1.10)2.16 (1.04)2.58 (1.13)−1.682.81 (1.01)2.15 (1.08)2.69**0.642.12 (1.13)2.55 (1.09)−1.60
Unnecessary treatment2.81 (1.06)2.81 (0.98)2.84 (1.10)−0.153.03 (1.12)2.66 (0.96)1.582.64 (1.00)2.93 (1.08)−1.14
Results could be inaccurate3.05 (1.01)2.90 (0.98)3.18 (0.98)−1.233.29 (0.97)2.94 (0.92)1.633.00 (1.00)3.11 (0.99)−0.45
Results may have negative impact on my family2.65 (1.16)2.61 (1.15)2.71 (1.17)−0.353.16 (1.02)2.32 (1.14)3.33***0.802.36 (1.22)2.79 (1.11)−1.55
If the results show that I have a genetic risk, there is nothing I can do to affect my risk2.66 (1.25)2.65 (1.28)2.71 (1.24)−0.213.09 (1.20)2.43 (1.23)2.39*0.542.44 (1.26)2.79 (1.25)−1.15
Limited employment opportunities2.70 (1.23)2.55 (1.15)2.82 (1.26)−0.962.81 (1.01)2.66 (1.37)0.512.88 (1.26)2.65 (1.22)0.73
Barriers to obtaining life insurance coverage3.52 (1.30)3.34 (1.34)3.67 (1.23)−1.113.45 (1.03)3.64 (1.45)−0.623.54 (1.32)3.57 (1.28)−0.10
Barriers to obtaining private health insurance coverage3.40 (1.33)3.07 (1.34)3.60 (1.30)−1.763.22 (1.10)3.51 (1.50)−0.943.42 (1.32)3.39 (1.36)0.09
Social stigma2.36 (1.14)2.20 (1.10)2.44 (1.18)−0.922.73 (1.04)2.07 (1.14)2.64**0.602.29 (1.20)2.37 (1.14)−0.27
Knowledge
How much have you heard about genetic testing for lung cancer risk?0.36 (0.48)0.39 (0.50)0.33 (0.48)0.490.44 (0.50)0.30 (0.46)1.270.40 (0.50)0.32 (0.47)0.68
Worry
To what degree do you worry about getting lung cancer?1.43 (0.74)1.42 (0.72)1.45 (0.77)−0.171.60 (0.93)1.34 (0.60)1.491.76 (1.01)1.28 (0.53)2.79**0.59
Interest
How interested would you be in taking a one-time genetic test for lung cancer risk?3.41 (1.20)3.48 (1.12)3.37 (1.25)0.433.15 (1.33)3.57 (1.10)−1.563.56 (1.08)3.35 (1.26)0.72

Notes: *P ≤ .05, **P ≤ .01, ***P ≤ .001.

Perceived severity: Rated on a 5-point Likert scale from 1 (not serious) to 5 (extremely serious).

Perceived susceptibility: Rated on a 5-point Likert scale from 1 (much less) to 5 (much higher).

Perceived benefits: Rated on a 5-point Likert scale from 1 (not at all beneficial) to 5 (very beneficial).

Perceived barriers: Rated on a 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree).

Worry: Rated on a 5-point Likert scale from 1 (not at all worried) to 5 (extremely worried).

Knowledge: Rated on a 5-point Likert scale from 1 (no information) to 5 (a lot of information).

Interest: Rated on a 5-point Likert scale from 1 (not at all interested) to 5 (very interested).

Gender, race, and smoking status differences based on HBM constructs

Perceived susceptibility. Men (M = 3.13, SD = 1.01) had higher perceived susceptibility to lung cancer than women (M = 2.50, SD = 1.23), t = 2.38, P = .01, d = 0.55. Participants with a history of smoking (M = 3.33, SD = 1.01) also reported higher perceived susceptibility than those who never smoked (M = 2.45, SD = 1.17), t = 3.20, P < .001, d = 0.80. No significant racial differences were observed.

Perceived benefits. Women (M = 4.12, SD = 0.89) were more likely than men (M = 3.53, SD = 1.25) to view genetic testing as beneficial for informing family members, t = −2.45, P = .008, d = 0.52. Similarly, participants who never smoked (M = 4.07, SD = 0.89) were more likely than those with a smoking history (M = 3.50, SD = 1.35) to perceive this benefit, t = −2.23, P = .010, d = 0.52. White participants (M = 4.23, SD = 0.94) reported greater perceived benefits for guiding health decision-making compared to African American participants (M = 3.81, SD = 1.06), t = −1.86, P = .030, d = 0.42.

Perceived barriers. Women (M = 3.17, SD = 1.15) were more concerned about psychological distress from genetic testing than men (M = 2.77, SD = 0.88), t = −1.66, P = .050, d = 0.39. They were also more concerned about family conflict (M = 2.58, SD = 1.13) than men (M = 2.16, SD = 1.04), t = −1.68, P = .049, d = 0.38. African Americans (M = 3.16, SD = 1.02) were more concerned about genetic testing’s potential negative impact on their family compared to White participants (M = 2.32, SD = 1.14), t = 3.33, P < .001, d = 0.78. They also perceived more social stigma (M = 2.73, SD = 1.04) associated with genetic testing than White participants (M = 2.07, SD = 1.14), t = 2.64, P = .010, d = 0.60.

Associations between HBM constructs and PRS knowledge and attitudes

As Table 2 shows, worry about lung cancer correlated with perceived susceptibility (r = 0.54, P < .001) and perceived barriers to undergoing PRS testing, including psychological distress (r = 0.25, P < .050) and concerns about test inaccuracy (r = 0.27, P < .010). PRS knowledge was positively associated with perceived barriers related to future employment (r = 0.25, P < .050) and life insurance (r = 0.31, P < .010). Interest in PRS was linked to several perceived benefits, including reducing uncertainty (r = 0.46, P < .001) and facilitating future planning (r = 0.33, P < .010). It was also associated with the belief that PRS could support health decision-making (r = 0.47, P < .001) and health behaviors (r = 0.42, P < .001), aid both children (r = 0.31, P < .010) and other family members (r = 0.47, P < .001), and contribute to lung cancer research (r = 0.41, P < .001).

Table 2

| Correlations between HBM constructs and worry, knowledge, and interest in PRS.

WorryKnowledgeInterest
HBM constructs
Perceived severity of lung cancer
Please rate the severity of lung cancer0.0640.0280.142
Perceived susceptibility to lung cancer
Compared with others your age, what do you think your chances are of being diagnosed with lung cancer?0.543***0.1700.029
Perceived benefits of PRS
Removal of uncertainty0.1860.0820.458***
Provision of information for children0.1190.0970.311**
Provision of information for other family members0.0970.0200.406***
Provision of information to guide health decision-making0.1140.0820.474***
May help research into this illness0.0450.1000.408***
Provision of information to guide health behaviors0.1160.0550.417***
Allows improved basis for planning for the future0.114−0.0250.333**
Perceived barriers to genetic testing for polygenic risk
Psychological distress0.253*0.0610.013
Family conflict0.1270.039−0.125
Unnecessary treatment0.1730.0510.037
The test results could be inaccurate0.273**0.0420.088
The results may have a negative impact on my family0.315−0.039−0.142
If the results show that I have a genetic risk, there is nothing I can do to affect my risk0.205−0.011−0.137
Limited employment opportunities0.0270.247*−0.026
Barriers to obtaining life insurance coverage0.0010.305**0.164
Barriers to obtaining private health insurance coverage0.0550.3410.178
Social stigma0.1050.202−0.114
WorryKnowledgeInterest
HBM constructs
Perceived severity of lung cancer
Please rate the severity of lung cancer0.0640.0280.142
Perceived susceptibility to lung cancer
Compared with others your age, what do you think your chances are of being diagnosed with lung cancer?0.543***0.1700.029
Perceived benefits of PRS
Removal of uncertainty0.1860.0820.458***
Provision of information for children0.1190.0970.311**
Provision of information for other family members0.0970.0200.406***
Provision of information to guide health decision-making0.1140.0820.474***
May help research into this illness0.0450.1000.408***
Provision of information to guide health behaviors0.1160.0550.417***
Allows improved basis for planning for the future0.114−0.0250.333**
Perceived barriers to genetic testing for polygenic risk
Psychological distress0.253*0.0610.013
Family conflict0.1270.039−0.125
Unnecessary treatment0.1730.0510.037
The test results could be inaccurate0.273**0.0420.088
The results may have a negative impact on my family0.315−0.039−0.142
If the results show that I have a genetic risk, there is nothing I can do to affect my risk0.205−0.011−0.137
Limited employment opportunities0.0270.247*−0.026
Barriers to obtaining life insurance coverage0.0010.305**0.164
Barriers to obtaining private health insurance coverage0.0550.3410.178
Social stigma0.1050.202−0.114

Notes: *P ≤ .05, **P ≤ .01, ***P ≤ .001.

Perceived severity: Rated on a 5-point Likert scale from 1 (not serious) to 5 (extremely serious).

Perceived susceptibility: Rated on a 5-point Likert scale from 1 (much less) to 5 (much higher).

Rated on a 5-point Likert scale from 1 (not at all interested) to 5 (very interested).

Perceived benefits: Rated on a 5-point Likert scale from 1 (not at all beneficial) to 5 (very beneficial).

Perceived barriers: Rated on a 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree).

Worry: Single item, “To what degree do you worry about getting lung cancer?” Rated on a 5-point Likert scale from 1 (not at all worried) to 5 (extremely worried).

Knowledge: Single item, “How much have you heard about genetic testing for lung cancer risk?” Rated on a 5-point Likert scale from 1 (no information) to 5 (a lot of information).

Interest: Single item, “How interested would you be in taking a one-time genetic test for lung cancer risk?” Rated on a 5-point Likert scale from 1 (not at all interested) to 5 (very interested).

Table 2

| Correlations between HBM constructs and worry, knowledge, and interest in PRS.

WorryKnowledgeInterest
HBM constructs
Perceived severity of lung cancer
Please rate the severity of lung cancer0.0640.0280.142
Perceived susceptibility to lung cancer
Compared with others your age, what do you think your chances are of being diagnosed with lung cancer?0.543***0.1700.029
Perceived benefits of PRS
Removal of uncertainty0.1860.0820.458***
Provision of information for children0.1190.0970.311**
Provision of information for other family members0.0970.0200.406***
Provision of information to guide health decision-making0.1140.0820.474***
May help research into this illness0.0450.1000.408***
Provision of information to guide health behaviors0.1160.0550.417***
Allows improved basis for planning for the future0.114−0.0250.333**
Perceived barriers to genetic testing for polygenic risk
Psychological distress0.253*0.0610.013
Family conflict0.1270.039−0.125
Unnecessary treatment0.1730.0510.037
The test results could be inaccurate0.273**0.0420.088
The results may have a negative impact on my family0.315−0.039−0.142
If the results show that I have a genetic risk, there is nothing I can do to affect my risk0.205−0.011−0.137
Limited employment opportunities0.0270.247*−0.026
Barriers to obtaining life insurance coverage0.0010.305**0.164
Barriers to obtaining private health insurance coverage0.0550.3410.178
Social stigma0.1050.202−0.114
WorryKnowledgeInterest
HBM constructs
Perceived severity of lung cancer
Please rate the severity of lung cancer0.0640.0280.142
Perceived susceptibility to lung cancer
Compared with others your age, what do you think your chances are of being diagnosed with lung cancer?0.543***0.1700.029
Perceived benefits of PRS
Removal of uncertainty0.1860.0820.458***
Provision of information for children0.1190.0970.311**
Provision of information for other family members0.0970.0200.406***
Provision of information to guide health decision-making0.1140.0820.474***
May help research into this illness0.0450.1000.408***
Provision of information to guide health behaviors0.1160.0550.417***
Allows improved basis for planning for the future0.114−0.0250.333**
Perceived barriers to genetic testing for polygenic risk
Psychological distress0.253*0.0610.013
Family conflict0.1270.039−0.125
Unnecessary treatment0.1730.0510.037
The test results could be inaccurate0.273**0.0420.088
The results may have a negative impact on my family0.315−0.039−0.142
If the results show that I have a genetic risk, there is nothing I can do to affect my risk0.205−0.011−0.137
Limited employment opportunities0.0270.247*−0.026
Barriers to obtaining life insurance coverage0.0010.305**0.164
Barriers to obtaining private health insurance coverage0.0550.3410.178
Social stigma0.1050.202−0.114

Notes: *P ≤ .05, **P ≤ .01, ***P ≤ .001.

Perceived severity: Rated on a 5-point Likert scale from 1 (not serious) to 5 (extremely serious).

Perceived susceptibility: Rated on a 5-point Likert scale from 1 (much less) to 5 (much higher).

Rated on a 5-point Likert scale from 1 (not at all interested) to 5 (very interested).

Perceived benefits: Rated on a 5-point Likert scale from 1 (not at all beneficial) to 5 (very beneficial).

Perceived barriers: Rated on a 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree).

Worry: Single item, “To what degree do you worry about getting lung cancer?” Rated on a 5-point Likert scale from 1 (not at all worried) to 5 (extremely worried).

Knowledge: Single item, “How much have you heard about genetic testing for lung cancer risk?” Rated on a 5-point Likert scale from 1 (no information) to 5 (a lot of information).

Interest: Single item, “How interested would you be in taking a one-time genetic test for lung cancer risk?” Rated on a 5-point Likert scale from 1 (not at all interested) to 5 (very interested).

Qualitative and mixed-methods results

Perceptions and attitudes toward lung cancer and PRS, based on the HBM, are summarized below. Supporting quotes are provided in Table 3.

Table 3

| Qualitative themes, illustrative quotes, and thematic insights.

ThemeIllustrative quoteThematic insight
Perceived severity“Lung cancer is a death sentence; I’ve seen too many people go through it, and it’s always been devastating.”Lung cancer is viewed as a highly severe and life-threatening disease.
“I know how bad lung cancer is, and honestly, I’m scared to know if I’m at high risk. It might just add to my stress.”Fear of PRS testing due to the psychological burden of knowing one’s high risk.
Perceived susceptibility“I don’t feel like I’m at risk right now, but I do work in an industry where I’m exposed to a lot of chemicals, so who knows what might happen down the line?”Perceived susceptibility is low unless influenced by environmental or occupational factors.
“I don’t think that I am because I’ve never smoked. I haven’t lived in any places with significant air pollution.”Low perceived risk due to absence of known risk factors like smoking or pollution exposure.
“Given my family’s history with lung cancer, knowing my genetic risk could help me take preventive measures sooner rather than later.”Family history increases perceived susceptibility and interest in PRS testing.
Perceived benefits“The knowledge of the possibility [of heightened lung cancer risk] would be enough to get my head on straight and do my research into all of my options.”Knowledge of genetic risk is seen as empowering and enabling informed decision-making.
“If I’m at high risk, my family might be too. I’d want them to know so they can get tested and take steps to protect their health.”Genetic testing is valued for its potential to inform and protect family members.
Perceived barriers“I would want to know if Medicare would pay for it or if it would be an out-of-pocket cost before moving ahead with it.”Cost is a major barrier to considering PRS testing.
“Just how conclusive is the test? I mean, is it 100% accurate? Is it 50% accurate? I think I’d want to know that.”Concerns about the accuracy and reliability of genetic tests.
“I have general concerns about technology—particularly digital data. Specifically, privacy, security, and how my data would be used.”Privacy and data security concerns are significant barriers to genetic testing.
“The cons would be my mental state if I found out about it. That would be the cons, dealing with the emotional, mental part of it.”Concerns about the emotional impact of receiving high-risk results.
Knowledge and interest in PRS“I’ve just heard that there is genetic testing. I don’t know anything about it.”General lack of knowledge about PRS testing.
“Yes, we did genetic testing in utero for my son.”Experience with genetic testing is often limited to prenatal contexts.
“Knowing how serious lung cancer is, I’d want to know my genetic risk so I could do everything possible to catch it early or prevent it.”High perceived severity of lung cancer increases interest in PRS testing.
“I don’t smoke and I don’t work in a factory, so why should I [undergo genetic testing for lung cancer risk]?”Low perceived susceptibility decreases interest in PRS testing.
“The science isn’t there yet. Even if I knew I was at high risk, what could I actually do differently?”Skepticism about the utility of PRS testing due to limited actionable steps.
Cues to action“My father was diagnosed with lung cancer, and that made me think about my own risk and what I could do to find that out.”Family history serves as a strong motivator for considering PRS testing.
“If a doctor recommended it because of my family history or symptoms, then I would probably go ahead and do the test.”Medical advice plays a crucial role in motivating PRS testing.
“If there was a free screening event, I would definitely be interested in participating.”Free or accessible screening opportunities increase willingness to participate in PRS testing.
Return of results preferences“I would rather my doctor tell me my results than a lab tech or a stranger. If it is bad, I want someone to tell me that we’ll get through this together.”Preference for results to be delivered by trusted healthcare professionals, especially for high-risk findings.
“I want somebody who can give me a detailed explanation and help me understand what the results mean for my health.”Need for clear explanations and understanding of what genetic test results mean.
“I think I should receive all the information found in this test, not just what is relevant to lung cancer.”Desire for comprehensive information beyond just lung cancer risk.
“Where it’s going? How it’s used? Where it’s stored? Who gets to see—not only who handles it but who also gets to see the results?”Concerns about privacy, data security, and confidentiality in the handling of genetic information.
ThemeIllustrative quoteThematic insight
Perceived severity“Lung cancer is a death sentence; I’ve seen too many people go through it, and it’s always been devastating.”Lung cancer is viewed as a highly severe and life-threatening disease.
“I know how bad lung cancer is, and honestly, I’m scared to know if I’m at high risk. It might just add to my stress.”Fear of PRS testing due to the psychological burden of knowing one’s high risk.
Perceived susceptibility“I don’t feel like I’m at risk right now, but I do work in an industry where I’m exposed to a lot of chemicals, so who knows what might happen down the line?”Perceived susceptibility is low unless influenced by environmental or occupational factors.
“I don’t think that I am because I’ve never smoked. I haven’t lived in any places with significant air pollution.”Low perceived risk due to absence of known risk factors like smoking or pollution exposure.
“Given my family’s history with lung cancer, knowing my genetic risk could help me take preventive measures sooner rather than later.”Family history increases perceived susceptibility and interest in PRS testing.
Perceived benefits“The knowledge of the possibility [of heightened lung cancer risk] would be enough to get my head on straight and do my research into all of my options.”Knowledge of genetic risk is seen as empowering and enabling informed decision-making.
“If I’m at high risk, my family might be too. I’d want them to know so they can get tested and take steps to protect their health.”Genetic testing is valued for its potential to inform and protect family members.
Perceived barriers“I would want to know if Medicare would pay for it or if it would be an out-of-pocket cost before moving ahead with it.”Cost is a major barrier to considering PRS testing.
“Just how conclusive is the test? I mean, is it 100% accurate? Is it 50% accurate? I think I’d want to know that.”Concerns about the accuracy and reliability of genetic tests.
“I have general concerns about technology—particularly digital data. Specifically, privacy, security, and how my data would be used.”Privacy and data security concerns are significant barriers to genetic testing.
“The cons would be my mental state if I found out about it. That would be the cons, dealing with the emotional, mental part of it.”Concerns about the emotional impact of receiving high-risk results.
Knowledge and interest in PRS“I’ve just heard that there is genetic testing. I don’t know anything about it.”General lack of knowledge about PRS testing.
“Yes, we did genetic testing in utero for my son.”Experience with genetic testing is often limited to prenatal contexts.
“Knowing how serious lung cancer is, I’d want to know my genetic risk so I could do everything possible to catch it early or prevent it.”High perceived severity of lung cancer increases interest in PRS testing.
“I don’t smoke and I don’t work in a factory, so why should I [undergo genetic testing for lung cancer risk]?”Low perceived susceptibility decreases interest in PRS testing.
“The science isn’t there yet. Even if I knew I was at high risk, what could I actually do differently?”Skepticism about the utility of PRS testing due to limited actionable steps.
Cues to action“My father was diagnosed with lung cancer, and that made me think about my own risk and what I could do to find that out.”Family history serves as a strong motivator for considering PRS testing.
“If a doctor recommended it because of my family history or symptoms, then I would probably go ahead and do the test.”Medical advice plays a crucial role in motivating PRS testing.
“If there was a free screening event, I would definitely be interested in participating.”Free or accessible screening opportunities increase willingness to participate in PRS testing.
Return of results preferences“I would rather my doctor tell me my results than a lab tech or a stranger. If it is bad, I want someone to tell me that we’ll get through this together.”Preference for results to be delivered by trusted healthcare professionals, especially for high-risk findings.
“I want somebody who can give me a detailed explanation and help me understand what the results mean for my health.”Need for clear explanations and understanding of what genetic test results mean.
“I think I should receive all the information found in this test, not just what is relevant to lung cancer.”Desire for comprehensive information beyond just lung cancer risk.
“Where it’s going? How it’s used? Where it’s stored? Who gets to see—not only who handles it but who also gets to see the results?”Concerns about privacy, data security, and confidentiality in the handling of genetic information.
Table 3

| Qualitative themes, illustrative quotes, and thematic insights.

ThemeIllustrative quoteThematic insight
Perceived severity“Lung cancer is a death sentence; I’ve seen too many people go through it, and it’s always been devastating.”Lung cancer is viewed as a highly severe and life-threatening disease.
“I know how bad lung cancer is, and honestly, I’m scared to know if I’m at high risk. It might just add to my stress.”Fear of PRS testing due to the psychological burden of knowing one’s high risk.
Perceived susceptibility“I don’t feel like I’m at risk right now, but I do work in an industry where I’m exposed to a lot of chemicals, so who knows what might happen down the line?”Perceived susceptibility is low unless influenced by environmental or occupational factors.
“I don’t think that I am because I’ve never smoked. I haven’t lived in any places with significant air pollution.”Low perceived risk due to absence of known risk factors like smoking or pollution exposure.
“Given my family’s history with lung cancer, knowing my genetic risk could help me take preventive measures sooner rather than later.”Family history increases perceived susceptibility and interest in PRS testing.
Perceived benefits“The knowledge of the possibility [of heightened lung cancer risk] would be enough to get my head on straight and do my research into all of my options.”Knowledge of genetic risk is seen as empowering and enabling informed decision-making.
“If I’m at high risk, my family might be too. I’d want them to know so they can get tested and take steps to protect their health.”Genetic testing is valued for its potential to inform and protect family members.
Perceived barriers“I would want to know if Medicare would pay for it or if it would be an out-of-pocket cost before moving ahead with it.”Cost is a major barrier to considering PRS testing.
“Just how conclusive is the test? I mean, is it 100% accurate? Is it 50% accurate? I think I’d want to know that.”Concerns about the accuracy and reliability of genetic tests.
“I have general concerns about technology—particularly digital data. Specifically, privacy, security, and how my data would be used.”Privacy and data security concerns are significant barriers to genetic testing.
“The cons would be my mental state if I found out about it. That would be the cons, dealing with the emotional, mental part of it.”Concerns about the emotional impact of receiving high-risk results.
Knowledge and interest in PRS“I’ve just heard that there is genetic testing. I don’t know anything about it.”General lack of knowledge about PRS testing.
“Yes, we did genetic testing in utero for my son.”Experience with genetic testing is often limited to prenatal contexts.
“Knowing how serious lung cancer is, I’d want to know my genetic risk so I could do everything possible to catch it early or prevent it.”High perceived severity of lung cancer increases interest in PRS testing.
“I don’t smoke and I don’t work in a factory, so why should I [undergo genetic testing for lung cancer risk]?”Low perceived susceptibility decreases interest in PRS testing.
“The science isn’t there yet. Even if I knew I was at high risk, what could I actually do differently?”Skepticism about the utility of PRS testing due to limited actionable steps.
Cues to action“My father was diagnosed with lung cancer, and that made me think about my own risk and what I could do to find that out.”Family history serves as a strong motivator for considering PRS testing.
“If a doctor recommended it because of my family history or symptoms, then I would probably go ahead and do the test.”Medical advice plays a crucial role in motivating PRS testing.
“If there was a free screening event, I would definitely be interested in participating.”Free or accessible screening opportunities increase willingness to participate in PRS testing.
Return of results preferences“I would rather my doctor tell me my results than a lab tech or a stranger. If it is bad, I want someone to tell me that we’ll get through this together.”Preference for results to be delivered by trusted healthcare professionals, especially for high-risk findings.
“I want somebody who can give me a detailed explanation and help me understand what the results mean for my health.”Need for clear explanations and understanding of what genetic test results mean.
“I think I should receive all the information found in this test, not just what is relevant to lung cancer.”Desire for comprehensive information beyond just lung cancer risk.
“Where it’s going? How it’s used? Where it’s stored? Who gets to see—not only who handles it but who also gets to see the results?”Concerns about privacy, data security, and confidentiality in the handling of genetic information.
ThemeIllustrative quoteThematic insight
Perceived severity“Lung cancer is a death sentence; I’ve seen too many people go through it, and it’s always been devastating.”Lung cancer is viewed as a highly severe and life-threatening disease.
“I know how bad lung cancer is, and honestly, I’m scared to know if I’m at high risk. It might just add to my stress.”Fear of PRS testing due to the psychological burden of knowing one’s high risk.
Perceived susceptibility“I don’t feel like I’m at risk right now, but I do work in an industry where I’m exposed to a lot of chemicals, so who knows what might happen down the line?”Perceived susceptibility is low unless influenced by environmental or occupational factors.
“I don’t think that I am because I’ve never smoked. I haven’t lived in any places with significant air pollution.”Low perceived risk due to absence of known risk factors like smoking or pollution exposure.
“Given my family’s history with lung cancer, knowing my genetic risk could help me take preventive measures sooner rather than later.”Family history increases perceived susceptibility and interest in PRS testing.
Perceived benefits“The knowledge of the possibility [of heightened lung cancer risk] would be enough to get my head on straight and do my research into all of my options.”Knowledge of genetic risk is seen as empowering and enabling informed decision-making.
“If I’m at high risk, my family might be too. I’d want them to know so they can get tested and take steps to protect their health.”Genetic testing is valued for its potential to inform and protect family members.
Perceived barriers“I would want to know if Medicare would pay for it or if it would be an out-of-pocket cost before moving ahead with it.”Cost is a major barrier to considering PRS testing.
“Just how conclusive is the test? I mean, is it 100% accurate? Is it 50% accurate? I think I’d want to know that.”Concerns about the accuracy and reliability of genetic tests.
“I have general concerns about technology—particularly digital data. Specifically, privacy, security, and how my data would be used.”Privacy and data security concerns are significant barriers to genetic testing.
“The cons would be my mental state if I found out about it. That would be the cons, dealing with the emotional, mental part of it.”Concerns about the emotional impact of receiving high-risk results.
Knowledge and interest in PRS“I’ve just heard that there is genetic testing. I don’t know anything about it.”General lack of knowledge about PRS testing.
“Yes, we did genetic testing in utero for my son.”Experience with genetic testing is often limited to prenatal contexts.
“Knowing how serious lung cancer is, I’d want to know my genetic risk so I could do everything possible to catch it early or prevent it.”High perceived severity of lung cancer increases interest in PRS testing.
“I don’t smoke and I don’t work in a factory, so why should I [undergo genetic testing for lung cancer risk]?”Low perceived susceptibility decreases interest in PRS testing.
“The science isn’t there yet. Even if I knew I was at high risk, what could I actually do differently?”Skepticism about the utility of PRS testing due to limited actionable steps.
Cues to action“My father was diagnosed with lung cancer, and that made me think about my own risk and what I could do to find that out.”Family history serves as a strong motivator for considering PRS testing.
“If a doctor recommended it because of my family history or symptoms, then I would probably go ahead and do the test.”Medical advice plays a crucial role in motivating PRS testing.
“If there was a free screening event, I would definitely be interested in participating.”Free or accessible screening opportunities increase willingness to participate in PRS testing.
Return of results preferences“I would rather my doctor tell me my results than a lab tech or a stranger. If it is bad, I want someone to tell me that we’ll get through this together.”Preference for results to be delivered by trusted healthcare professionals, especially for high-risk findings.
“I want somebody who can give me a detailed explanation and help me understand what the results mean for my health.”Need for clear explanations and understanding of what genetic test results mean.
“I think I should receive all the information found in this test, not just what is relevant to lung cancer.”Desire for comprehensive information beyond just lung cancer risk.
“Where it’s going? How it’s used? Where it’s stored? Who gets to see—not only who handles it but who also gets to see the results?”Concerns about privacy, data security, and confidentiality in the handling of genetic information.

Perceived severity and susceptibility. Participants commonly viewed lung cancer as highly severe and fatal, often based on personal experiences, which contributed to apprehension about PRS testing due to potential psychological burdens. Perceived susceptibility was generally low unless individuals had a family history or exposure to smoking, occupational hazards, or environmental pollutants.

Knowledge and interest in PRS. Most participants knew little about genetic testing for lung cancer risk, often associating it with breast cancer due to greater media coverage. Prior experience with genetic testing was mostly in prenatal contexts. While some were skeptical of its purpose and reliability, many were open to learning more. A common concern was the perceived lack of actionable steps, especially among those who had already made behavioral changes, such as quitting smoking. Interest in PRS testing varied by perceived severity and susceptibility. Those who saw lung cancer as highly severe favored PRS for early detection and prevention, while those with lower perceived susceptibility questioned its relevance, especially if they lacked known risk factors like smoking or occupational exposure. In contrast, individuals with a family history or other risk factors viewed PRS as valuable for proactive health decisions.

Perceived benefits. Participants saw few benefits to genetic risk testing for lung cancer. The primary advantage was its potential to guide health decisions, such as pursuing screenings or healthier behaviors, particularly for those aware of their elevated risk due to smoking or family history. Another benefit was informing family members of potential genetic risks, which some felt could encourage relatives to seek testing and take preventive measures, promoting awareness and early intervention.

Perceived barriers. Participants cited cost, accuracy, privacy, and emotional impact as key barriers to genetic risk testing. Financial concerns were the most common, with 34% (N = 48) uncertain about insurance coverage and out-of-pocket costs. Accuracy concerns, raised by 30% (N = 42), included doubts about the reliability of PRS results and their utility in guiding medical decisions.

Privacy concerns, reported by 23% (N = 32), focused on data security and potential impacts on insurance eligibility. In addition, 24% (N = 34) emphasized the need for actionable PRS results, stating they were more inclined to undergo testing if it directly informed prevention or treatment options. Many participants reported feelings of concern, sadness, anxiety, shock, or despondency when considering a high-risk PRS result. Some feared it could worsen mental health issues like depression and anxiety, while others believed they would cope by seeking more information and pursuing additional screenings. A subset took a fatalistic view, believing genetic risk was beyond their control and that faith or personal resilience would guide their response.

Cues to action. Family history was a strong motivator for considering PRS testing, but for some who already perceived themselves as high risk, additional genetic risk information was unappealing. Individuals with preexisting lung conditions, such as COPD, felt that PRS results would merely confirm what they already suspected. Among individuals who currently smoked, 60% (6 out of 10) said they would not change their smoking habits even if identified as high risk, though most would increase lung CT scan frequency. Conversely, the 53% (23 of 43) with a smoking history were less inclined to undergo CT scans if their polygenic risk was low, questioning the need for screening without elevated genetic risk.

Return of results preferences. Most participants preferred receiving comprehensive genetic test results from trusted professionals, such as physicians or genetic counselors, who they believed were best equipped to explain the findings. In-person delivery was favored for high-risk results, while digital communication was acceptable for less critical information, if the communicator was knowledgeable.

Participants emphasized the need for clear, contextual interpretation, preferring risk estimates in percentages along with guidance on their implications. Privacy and data security were major concerns, with many wanting transparency on how their genetic data would be handled, stored, and accessed. Initially, most preferred to keep their results private, sharing only with a close family member or physician until they had more certainty. Participants also valued ongoing support and access to updated guidelines and options based on their genetic risk. Many emphasized the need for clear recommendations on screening and management to ensure results were actionable.

Discussion

This study explored knowledge and attitudes toward lung cancer PRS, as well as the perceived benefits, barriers, and preferences regarding the return of PRS results. While participants recognized the severity of lung cancer, their knowledge of PRS was limited, and concerns about accuracy, privacy, and emotional impact tempered interest. Many struggled to translate genetic risk into actionable health behaviors, such as quitting smoking—a challenge seen in broader cancer risk research. One study37 found that PRS influenced perceived risk but had little impact on screening behavior, though individuals with higher PRS scores were more aware of their risk and felt empowered to take preventive action. These findings align with the HBM, which suggests behavior change is more likely when individuals perceive a significant threat and trust in recommended actions. They are also consistent with the extended parallel process model, which posits that those who perceive a health threat but feel ill-equipped to respond may downplay or avoid risk information.38 This underscores the need to provide clear guidance on translating genetic risk into actionable steps, particularly through personalized screening and lifestyle interventions.39

Women, African Americans, and persons who never smoked perceived more barriers and fewer benefits to genetic testing for lung cancer risk. Women reported lower perceived susceptibility and greater concerns about psychological distress and family conflict. African Americans anticipated greater negative impacts on their families, fewer health benefits, and more social stigma than White participants. Persons who never smoked were less likely to see testing as beneficial. These findings offer new insights into demographic differences in perceptions of genetic testing for lung cancer risk and highlight the need for targeted public health messaging to improve PRS uptake.

This study demonstrated the utility of the HBM in understanding decision-making around lung cancer PRS. While participants acknowledged the severity of lung cancer, privacy concerns, and the psychological impact of learning one’s genetic risk were major barriers. Many feared genetic data the misuse by insurers or employers and preferred to keep it private. To address concerns, clinicians could refine counseling techniques to align with patient beliefs and provide clearer risk-benefit discussions. Targeted educational materials addressing misconceptions may help reduce barriers and encourage PRS engagement. Secure virtual platforms could further support informed decision-making by facilitating shared experiences, providing accessible information, and ensuring privacy protections.

Strengths and limitations

This study’s strengths include its mixed-methods design, which provides a comprehensive exploration of factors influencing PRS testing decisions for lung cancer. By integrating quantitative data with qualitative insights, it captured nuanced personal experiences and motivations that may be overlooked in quantitative research alone. The HBM served as a strong framework for assessing perceptions of susceptibility, severity, benefits, and barriers. In addition, the diverse sample enhanced the study’s ability to explore attitudes toward lung cancer PRS testing across different demographic groups.

The study also has limitations. First, reliance on stated preferences rather than observed behaviors may affect the accuracy of expressed intentions, as real-life decisions could differ. Second, the cross-sectional design does not capture changes in attitudes over time, and self-reported data may introduce bias. Third, while the sample size was sufficient to detect differences, findings may not be fully generalizable, as participants were recruited from pulmonary and GIM clinics, which may not reflect broader clinical or community-based populations. Although this recruitment strategy captured a diverse patient population with varying lung cancer risk levels only 30% of participants reported a smoking history, potentially limiting applicability to higher-risk groups. In addition, recruitment within a clinical setting may have excluded individuals not engaged in healthcare, limiting perspectives from populations who may face greater barriers to genetic testing access. Fourth, the total number of patients approached during recruitment was not systematically recorded, preventing an accurate calculation of the recruitment rate. Fifth, the survey measures were not previously validated; while developed through literature review and expert consultation, they may not fully capture all HBM constructs, potentially affecting reliability and validity. Sixth, only English-speaking participants were included, possibly excluding individuals with limited English proficiency who may hold distinct views on genetic risk and testing. Finally, attention should be given to individuals with a PRS in the highest risk category (above the 90th percentile), as they face significantly elevated lung cancer risk.40 Combining PRS with clinical risk factors, such as smoking history, could further improve targeted screening and prevention efforts.

Conclusion

Polygenic risk testing for lung cancer holds promise for early detection and personalized healthcare. This study, guided by the HBM, identified key factors shaping attitudes toward PRS testing, including privacy concerns, psychological impact, perceived susceptibility, and perceived benefits. Findings varied by gender, race, and smoking status, highlighting the need for targeted interventions that address sociodemographic and personal risk factors. Tailored education and counseling that link genetic risk to actionable health behaviors may promote informed decision-making and broader participation, ensuring those at the highest risk benefit from personalized prevention strategies.

Acknowledgments

We would like to sincerely thank the participants of this study for their valuable contributions. We also extend our gratitude to Hana Wani, Manvi Thawani, and Chisomnazu Ibe for their assistance with qualitative coding, and to Ellen Xiang for her help with data collection and research coordination.

Author contributions

Hoda Badr (Conceptualization, Data curation, Formal analysis [lead], Funding acquisition [supporting], Writing—original draft [lead]), Jinyoung Byun (Funding acquisition, Writing—review & editing [supporting]), Melinda C. Aldrich (Writing—review & editing [supporting]), Laura J. Bierut (Writing—review & editing [supporting]), Li-Shiun Chen (Writing—review & editing [supporting]), Rayjean J. Hung (Writing—review & editing [supporting]), and Christopher I. Amos (Funding acquisition [lead], Writing—review & editing [supporting])

Funding

United States National Cancer Institute (U19 CA203654-S) (Amos).

Conflicts of interest

The authors declare no conflict of interest.

Ethics declaration

This study involved human participants and was reviewed and approved by the Institutional Review Board (IRB) of Baylor College of Medicine (BCM). The IRB ensured that all ethical standards, including those outlined in the Declaration of Helsinki, were adhered to during the study. Informed consent was required and obtained from all participants, in accordance with IRB guidelines. All participant data used in this study were de-identified to protect confidentiality and privacy. No identifiable patient data were included, and there was no use of biobank samples.

Open science statements: study registration

This study was not pre-registered. Analytic plan registration: No pre-registration of the analytic plan was conducted; Availability of data: The datasets generated and analyzed during the current study are available from the corresponding author upon reasonable request; Availability of analytic code: The analytic code used in this study is available from the corresponding author upon reasonable request. Availability of materials: There are no additional materials available for this study.

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