“A Gift to My Family for Their Future”: Attitudes about Genetic Research Participation

Background: Broad participation in genetic research is needed to promote equitable advances in disease treatment and prevention. Objectives: The objective of the study was to assess motivations for, and concerns about, genetic research participation. Methods: The Genetics in Research and Health Care Survey was sent in winter 2017–2018 to 57,331 adult Kaiser Permanente (KP) members from 7 US regions to assess attitudes about genetic testing in health care and research. The survey included an open-ended question on why members would or would not participate in genetic research. Open text responses to this question were coded in the qualitative analysis software Dedoose and analyzed using a thematic analysis approach. Code summaries were organized by major themes, subthemes, and exemplary quotes. Results: Of the 10,369 participants who completed the survey, 2,645 (25%) provided a comment describing reasons they would or would not participate in research involving genetic testing. Respondents who provided a text comment were 64% female, 49% non-Hispanic (NH) White, 17% Asian/Pacific Islander, 20% Hispanic, and 14% NH Black. The primary themes identified were (1) altruism; (2) decision-making and planning; (3) data use; and (4) data security. These major themes were consistent across each race and ethnic group. Conclusions: To promote broad participation in genetic research, it is important that recruitment materials address the primary motivators for genetic research participation, including altruism and the potential use of results for personal decision-making. Study materials should also address concerns about possible misuse of genetic information and fears over potential data breaches.

© 2022 The Author(s). Published by S. Karger AG, Basel

Introduction

Personal use of genetics has changed rapidly over the last decade. Direct-to-consumer genetic testing, celebrity use, decreased costs, expanded health insurance coverage, and corporate wellness initiatives offering genetic testing have increased public awareness and uptake of genetic testing [1-4]. Biobanks and other genetic research projects may benefit from increased public interest, but for genetic research to contribute to the health of diverse populations, large numbers and a broad range of individuals from different backgrounds must be willing to participate in genetic research. Understanding the factors that motivate or deter participation in genetic research and biobanks is important for developing effective recruitment and retention materials for genetic research and may help to encourage broader and more diverse participation.

Prior studies have evaluated what motivates people to participate in large biobanks and other genetic research studies [5-15]. Gaining access to personal disease risk information and understanding how disease risk may impact an individual’s children or grandchildren have been reported as important motivators of genetic research participation [5, 6, 11-14]. Despite these strong motivators, concerns over privacy [5, 8, 9, 13, 15], discrimination [8, 11, 13, 16-18], and anticipated negative emotional responses to test results [5] may hinder participation.

As familiarity with genetic testing increases, it is uncertain if historical motivators of, and hindrances to, genetic research participation will remain. Furthermore, most prior large genetic studies and biobanking initiatives have been conducted in populations of predominant Northern European ancestry [19, 20]. This highlights the importance of research to understand perspectives on participation in genetic research from diverse populations.

The purpose of this qualitative assessment is to report on factors that may motivate or hinder participation in research involving genetic testing from the perspectives of members of a large, integrated health care system. Prior qualitative studies in this area are largely based on small focus groups or interviews with a relatively homogenous group of participants [21-25]. Thus, an in-depth qualitative examination of the current perceived advantages and disadvantages of genetic research participation among a diverse cohort of respondents is needed. Diverse participants may illuminate additional contextual factors and provide important insights that might be missed in more homogeneous studies.

Materials and MethodsStudy Population and Setting

The Kaiser Permanente (KP) Genetics in Health Care and Research Survey was conducted from November 2017 through February 2018 among KP members in seven regions, nationwide (Colorado, Georgia, Hawaii, Mid-Atlantic states [District of Columbia, MD, Virginia], Northern California, Northwest [Oregon and Southwestern Washington State], and Southern California) [18, 26]. Eligible members were ages ≥18 years, had not opted out of research communications, and had been invited to participate in the KP Research Bank (KPRB) from 6 months to 2.5 years prior to the start of recruitment for this survey. The KPRB is a collaborative effort to create a biorepository that collects longitudinal medical record information, lifestyle surveys, and biospecimens from KP member volunteers across all KP regions. During the time period for this study, the primary enrollment approach for the KPRB was via email invitation to all adult KP members with a valid email address available. The proportion of KP members with valid email addresses ranges from 50 to 85% of members, depending on the region. Both those who consented to participate in the KPRB and members who were invited to participate in the KPRB, but who did not respond to the invitation, were eligible to complete the Genetics in Health Care and Research Survey. This survey was not sent by the KPRB but rather was considered separate from the KPRB. Study protocols and human subject considerations were reviewed and approved by the Institutional Review Board (IRB) at KP Mid-Atlantic states, which is the IRB of record for the KPRB. Accepting the online consent allowed participants access to the online survey.

Patient Advisory Panel

We recruited a patient advisory panel for this project from the Colorado Patient Partners in Research Network (CoPPiR) (coppir.org) [27], which includes adults in Colorado who have completed a health history questionnaire and agreed to be patient partners in research. The six members ranged in age from 32 to 66 years old, included both men and women, and four racial/ethnic groups (Asian, Hispanic, non-Hispanic [NH] Black, and NH White). Some patient advisors had cancer or a strong family history of heritable conditions and others were healthy adults that were interested in topics around disease prevention and family planning. The patient advisory panel aided the study team with survey domain prioritization, question selection, cognitive review for validity and readability [28, 29], and survey testing. They also provided feedback on the qualitative analysis results.

Survey Development

As previously described [18, 26], we developed an online, secure survey instrument using REDCap Software version 7.6.10. The survey included questions on the following domains: (1) personal experience with genetic testing; (2) understanding of genetics; (3) risk communication; (4) preferences for return of research results; (5) willingness to participate in genetic research under different return of results scenarios (no return of results, return of health-related results, and return of ancestry-related results); (6) genetic determinism; (7) concerns about genetic discrimination; (8) awareness of laws to protect against genetic discrimination; and (9) patient demographics (including region, education, language, age, and sex).

The last component of the survey included the following open-ended question, “We would like to know why you would or would not participate in health research that involves genetic testing. Please share your comments in the box below:.” The present analyses focuses on the written comments in response to this question.

Survey Recruitment

We used KP membership data linked to the KPRB recruitment database to identify KP members who had received an invitation to participate in the KPRB from 6 months to 2.5 years prior and to identify each member’s KP region, race/ethnicity, KPRB participation status, and email address. We then oversampled the population to ensure adequate representation based on race/ethnicity, KP region, and KPRB participation status. The initial invitation to complete the survey was sent via email, and the email contained an individual link to the online survey. Members not responding to the initial email were sent 2 reminder emails and 1 final reminder via text message. All study participants provided an online consent by agreeing to complete the survey in the online acknowledgment page prior to completing the study survey. Those completing the survey were sent an electronic USD 5 gift card via email.

Data Analysis

We analyzed participant written comments in response to the open-ended question on what might motivate or hinder their participation in research involving genetic testing by using an inductive, thematic analysis approach [30-33]. The inductive approach does not specify the codes to be used in analyses a priori [34-36]. Instead, the concepts and codes used in analyses are derived from open-ended responses. Applying these principles to the analysis of written comments allowed unanticipated responses and complex descriptions of participants’ experiences to surface.

Codebook Development

All participant comments were uploaded into Dedoose, a Web-based tool for qualitative data management and analysis (Dedoose.com). Using an iterative process, two investigators independently open-coded an initial random sample of 125 participant comments (of 6,245 total comments) to identify patterned responses and generate initial lists of codes [33]. More than one code could be identified in a single comment, and if appropriate, multiple codes were applied to each comment. After independent review, the coders compared their coding assignments from the initial random sample of comments received and used a consensus-based approach to further develop, define, revise, and agree upon the initial code list [37]. The code list was reviewed by the study team, which included a 3rd coder, and a second random sample of 125 comments was selected and independently coded by all 3 coders using the initial code list. This review resulted in slight, consensus-based modifications to the code list, and the master codebook was finalized, consisting of ten major code groupings. These rounds of iterative comparisons of coding decisions grounded the analysis in content from the comments and helped to standardize the use of codes among the three coders [38].

Inter-Rater Reliability Assessment

To assess agreement among coders, we selected another random sample of 125 comments, and each of the three coders independently used the master codebook to assign codes to each comment. We calculated the Kappa statistic to assess inter-rater reliability among the three study coders and achieved an inter-rater reliability Kappa = 0.7 interpreted as good or substantial agreement [39]. The 750 comments used to develop the codebook were then randomly split among the three coders and assigned for re-coding along the remaining 1,895 comments.

Identifying Major Themes and Subthemes

Each of the three coders reviewed one-third of the 2,645 comments received, assigning codes according to the master codebook. Reports with coding results were extracted from Dedoose and comments were grouped by code. The study team evaluated all of the comments grouped by code, created code summaries, discussed emerging themes and subthemes, and noted representative quotes [30]. The patient advisory panel established for the project also provided input on the initial set of themes, expanding researchers’ understanding of possible interpretations and categorizations. Major themes and subthemes were then finalized. We evaluated differences by race and ethnicity by calculating the prevalence of each theme and ranking them in order from most common to least common within each race and ethnic group to determine if there were differences in the relative prevalence of major themes, by race and ethnicity.

Results

There were 10,369 participants who completed the survey; of these respondents, 2,645 (25%) provided a written comment to the open-ended question on participation in research involving genetic testing. Those who were ages ≥60 years, NH White, with postgraduate degrees, and KP Research Bank participants were more likely to provide a comment (p value <0.01). Among those who provided a comment, 64% were female, 49% NH White, 20% Hispanic, 17% Asian/Pacific Islander, and 14% NH Black. Most of those who provided a comment (52%) were aged ≥60 years, and 59% had a bachelor’s or graduate degree (Table 1).

Table 1.

Demographic characteristics of members who did and did not provide a survey comment

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Through the thematic analyses, we identified four primary themes (Table 2). The most commonly referenced theme was altruism, followed by decision-making and planning, data use, and data security. These major themes and their rank from most common to least common were consistent across each race and ethnic group. The major themes and subthemes are described below.

Table 2.

Major themes and subthemes on genetic research participation (N = 2,645)

/WebMaterial/ShowPic/1430283Theme #1: Altruism

Among those commenting on motivating factors for genetic research participation (N = 1,635), 48% (N = 785) cited altruism; this was also the most common theme overall, with 30% of those who provided a comment citing altruism as a motivating factor. Respondents commented on the benefits of genetic research to society as a whole and to individuals and families. Three major subthemes of altruism emerged during analysis. These included betterment of humankind, advancement for science and medicine, and benefits for children and/or grandchildren.

Betterment of Humankind

The most frequent subtheme within altruism was a general desire to contribute to society; this was seen in comments reflecting a desire to help others and in the recognition that genetic research participation would not necessarily benefit the participant but instead would benefit others:

“If there is a way to further understanding of certain diseases or populations that would benefit society, I would be happy to participate in research that involves genetic testing. While there may not be any benefit to me, furthering research would benefit the common good.”

Advancement for Science and Medicine

Closely related to betterment of humankind was the distinct subtheme of a desire to contribute to the advancement of science, medicine, health care and treatments, and the possibility of contributing to the discovery of cures for diseases.

“I think genetic testing and the science that evolves from it will likely improve health and therefore quality of life for people…”

“One of my thoughts in joining genetic testing is that if research is being conducted to create new treatments and drugs, I would want my genetics to be available for testing so that would hopefully ensure better diversity in specialized drugs.”

Benefits for Children and/or Grandchildren

The third subtheme within altruism was the benefit that personal knowledge of one’s genetics could have to family members, most often children and/or grandchildren.

“I would participate because it is a gift to my family for their future. If someone had given me that gift, it could have helped me.”

Theme #2: Decision-Making and Planning

The decision-making and planning theme was the second most cited factor, with 307 (12% overall) of participants’ comments containing this theme that acts to motivate participation in research involving genetic research. This captures a common focus among respondents that more knowledge about one’s genetic predispositions and risks facilitates more informed health care/treatment and lifestyle decisions. Subthemes within decision-making and planning included “knowledge is power,” disease risk mitigation or alleviation, proactive lifestyle and/or behavioral changes, and reproductive and family planning.

“Knowledge Is Power”

Participants implied that knowing the results of genetic testing empowers patients by giving them the information they need to be proactive about their health. Many commented simply that “knowledge is power,” or described their feeling of empowerment:

“I believe genetics plays an important role in our health (along with environmental exposure) in our lives. That knowledge can be a useful tool for changes. It’s POWER over the helplessness of disease.”

Disease Risk Mitigation or Preparation

Another major subtheme was a focus on the ways genetic results could facilitate disease mitigation or preparation to deal with a genetic condition. For example, some participants commented that knowing test results provides the means to make informed decisions about preventive measures to reduce disease risks or prepare themselves and their family to deal with a disease that develops:

“Knowledge of any potential health/disease problems would enable me and my family to take preventative steps (if possible) or to prepare us for what may become a health problem (awareness).”

Proactive Lifestyle and/or Behavioral Changes

Commenters also described how knowing test results would inform decisions about lifestyle and behavioral changes (such as eating healthier or exercising more) in response to risks. Many described that they would have their “eyes opened,” have “insights,” and a “fast track” to remaining healthy:

“Understanding what my genetic makeup offers me, the solution of how I utilize lifestyle choices if my lifestyle is deteriorating my health or increases my risk is more important to me. Choices are best when you have the facts.”

Reproductive and Family Planning

Other respondents cited the benefits for family planning and how the knowledge from genetic results could affect a decision of whether or not to have children:

“I would want to participate in this health research because it is important to know you[r] risks of passing on a disease to your children before conceiving. This would give parents time to consider alternate options when thinking about children.”

Theme #3: Data Use

Data use was the third most common theme with 192 (7%) of participants’ comments containing this theme, and it was the most frequent reason cited for not participating in research involving genetic testing. Participants expressed concerns that genetic information could be used against them. In particular, genetic discrimination, mistrust of how corporations or the government may use genetic information, and the potential ineffectiveness or instability of GINA were common subthemes.

Genetic Discrimination

Fears of discrimination including the possible unethical use of genetic information that would jeopardize health or life insurance coverage, job security, and impact future generations emerged as a frequent worry.

“My main concern would be that the results could result in discrimination based on age, ethnicity, previous medical issues, not only for myself but for my children, grand-children, etc.”

“Life Insurance companies have a long history of discrimination against African Americans. My ability to provide for my family is greater than the need to know genetic test results.”

Mistrust of the Government and Corporations

In addition to discrimination, participants specifically mentioned that corporations may not respect individuals’ rights to privacy and confidentiality when faced with opportunities to use participants’ genetic information to increase their profits.

“I would also not participate because I would be concerned that the scientific research industry would take advantage of my cells and profit off of them.”

“Having this information could potentially be used by corporations to increase profits. In the wrong hands this information may be dangerous.”

Potential Ineffectiveness or Transience of Laws

An earlier portion of the survey asked about the Genetic Information Non-Discrimination Act (GINA), which protects individuals from employment or health insurance-related genetic discrimination [40], and informed survey respondents of GINA’s protections. However, many respondents wrote comments about concerns that GINA would not be sufficient to protect against discrimination or that the government and for-profit corporations may act to weaken GINA.

“GINA is a good law but laws change and the government is incapable of fully protecting privacy.” “Law or no law, capitalist insurance companies/hospitals will still use that info against patients/consumers/clients if they think they can get away with it.”

Theme #4: Data Security

The security of personal data was the fourth most common theme in participants’ comments, with 125 (5%) of participants’ comments containing this theme, and the second most common major theme that described hindrances to participation in research involving genetic testing. Subthemes included privacy concerns and having conditions of participation, such as a written guarantee or contract to safeguard individuals in the event of data breaches.

Privacy Concerns

Risks to privacy, specifically concerns that complete anonymity is impossible and no personal data are safe from hacking, were cited as reasons to forego participation in genetic testing research:

“In this modern age, any data that is stored by any company should be considered to be vulnerable to being bought, sold, or stolen.”

“I have low confidence that my genetic testing results would be held confidential – our major institutions have shown themselves to be profoundly incompetent in assuring data security.”

Some also commented skepticism about the enforcement of data protections:

“I am highly concerned about the security of my information…. Words only indicating privacy do not always result in fully protected privacy.”

Conditions of Participation

Many stated that their participation was impossible without a guarantee of anonymity and procedures in case privacy were breached, and the information were hacked or inadvertently shared:

“I might choose to participate if there was some guarantee the results would never be associated with me. In other words, only if there was total and complete anonymity.”

“I’m highly concerned about [how] the genetic results would be used and protected. To participate I would need some sort of contract ensuring the types of research and the use of the genetic results. I would also want some of recompense written in case [o]f data breaches.”

Discussion

This large, qualitative analysis of open-text comments regarding interest in participation in research involving genetic testing included a racially and ethnically diverse population of survey respondents and spanned seven regions in the USA. Themes identified in this analysis reflected both historical influences and current attitudes about genetic research participation. About 48% of respondents who commented on motivating factors affirmed that their desire to participate in research involving genetic testing was based on an altruistic ideal to contribute to the common good and further scientific research and/or to provide potentially helpful information to family members. Others who commented on motivating factors described interest in participating in genetic testing in order to make lifestyle decisions and plan for the future. Concerns about genetic research participation were less frequently cited than motivating factors. Among the concerns cited by respondents, the potential for participant data to be used in ways that they disagree with (e.g., to increase profits or promote discrimination) and lack of data security were the most common.

The themes identified in our results are consistent with the results from prior studies assessing what motivates participation in genetic testing. Altruism was the most common motivating factor for participation among our survey respondents. Like our results, the altruistic motivations described in prior studies were expressed as contributing to humankind and the advancement of science [13]. Prior studies also describe the desire to help family members [5, 41-44] by being able to provide information that could either alert them to potential concerns or motivate them to get tested to determine their own genetic predispositions.

Results from a 2006 cross-sectional survey among almost 3,000 18–80 year-olds in Sweden revealed that the public’s willingness to donate samples to biobanks and participate in genetic research was largely motivated by their desire to help future patients [45]. Luque et al. [46] also found that “potential scientific benefit to future generations” was cited by many of the 95 participants in that 2012 qualitative study. A 2011 mixed-methods study on 752 telephone interviews with colorectal cancer survivors in North Carolina found that people who wanted to participate in research that involved genetic testing would do it in the interest of helping greater society [47]. In preparation for establishing its own biobank, Veterans Affairs conducted a survey of 931 VA patients to understand their attitudes toward genetic research and biobanking. The results of the survey suggested that patient willingness to participate was associated with a sense of altruism [48].

In addition to altruism, our respondents described wanting to participate in genetic research so that they could learn more about their own genetics and make informed decisions about their health. Decision-making and planning as a motivator for participation has been highlighted as a theme in other studies. One study of the perspectives of 311 participants in the NIH ClinSeq Study reported that motivation to participate was informed by a belief that participants could use information from their research participation to inform their own decisions and prevent future disease [49]. Similarly, Hamilton et al.’s [50] results from focus groups with a total of 38 Hispanic men and women indicated that the main reason for participating in genetic testing research would be to receive results with “actionable health information.” In a survey of 200 participants with inherited retinal disease, information to inform family planning also arose as a perceived benefit of genetic testing [51].

It is notable that the perceived benefit of using information from genetic research participation to inform health decisions is predicated by the assumption that results will be returned to participants. Both quantitative and qualitative research studies support that most participants in genetic research prefer to receive information about their genetic test results [52-55], and our recent research indicates that return of results from genetic research may motivate research participation [18]. In our survey, we did not specify whether or not results from their participation in genetic research would be returned. Thus, the fact that respondents assumed that results would be returned has important implications for ensuring clear communication in consent documents and other recruitment materials. These study materials should specifically and explicitly address if participants should, or should not, expect to receive results back from their participation. If results are to be offered to participants, clear information on what type of results may be returned and how these results will be communicated to participants is also needed.

In addition to the dominant motivators of genetic research participation, concerns about unapproved use of genetic and personal data and lack of data security were documented in the participant comments. A recent review of perspectives on privacy and genetic information in the USA found that privacy was a primary concern [56]. In a 2016 study, interviews with both qualitative and quantitative components were used to assess the motivations and concerns of people who decided to have whole genome sequencing, 57% of the 35 participants expressed concerns about privacy [5]. Results of a survey of 450 people in the Northwest Cancer Genetics Registry, which included cancer survivors, their relatives, and controls, revealed that while participants wanted to make their data available for studies, they maintained concerns about their information being protected [57]. Comments from our survey respondents echoed these privacy concerns. Respondents specifically expressed that in today’s world of high-profile data breaches and data hacking, no entity can sufficiently protect their data. Health care systems and other entities with protected health information have been affected by recent data breaches [58] and have started enacting policies to help prevent future breaches [59]. However, our study highlights continued public concerns over data security, suggesting that genetic research studies might benefit from proactively addressing these concerns by explicitly communicating about their data protection and privacy standards [60].

Previous studies have also found that potential study participants are concerned about unapproved and unethical data use, including possible discrimination based on genetic test results. A 2016 systematic literature review of 42 studies identified strong concerns about genetic discrimination, despite there being little evidence of genetic discrimination actually taking place [16]. The same review recorded that increased awareness of laws prohibiting genetic discrimination did not decrease genetic discrimination concerns [16]. Survey respondents were informed about GINA protections during this survey and a number of participants commented on their concern that GINA was not strong or stable enough to protect them. Thus, additional research is needed to identify effective methods to address concerns about genetic discrimination. Furthermore, many respondents cited both pros and cons to genetic research participation making it clear that multiple considerations play into their decision-making. Further research is also needed to understand the multiple personal and societal factors that influence individual choices about research participation.

We acknowledge that our study has several limitations. Survey participants who responded to the open-text question were expressing their thoughts about a hypothetical opportunity to participate in research involving genetic testing, and decisions made in response to an actual opportunity may differ. In addition, all were KP members and had health insurance coverage; thus, our results may not be generalizable to uninsured populations which may have different concerns about genetic research participation. Also, over half of survey respondents were current participants in the KPRB, and KPRB participants were more likely to leave a comment, so there was likely a larger proportion of respondents expressing positive motivations for genetic research participation than would have been observed in a population without biobank participants. They also may have a higher level of scientific literacy and be better able to complete the survey and write a comment without undue intimidation. The strengths of this study are that we were able to include a large sample of responses from a racially, ethnically, and geographically diverse population of biobank participants and nonparticipants. Our large, diverse population along with our inductive qualitative analytic approach allowed for an in-depth description of the various reasons that individuals cited for participation or nonparticipation in genetic research.

Overall, this qualitative assessment of a large number of written comments from a racially and ethnically diverse survey population provides important insights into the contextual factors affecting participation in research involving genetic testing. We have found that although participants expressed concerns about unapproved data use and lack of data security, respondents also reported perceived benefits of genetic research participation, such as making an altruistic contribution to science or using their genetic testing results to inform family planning. This aids in understanding participant decision-making, local context, and provides considerations for designing appropriate intervention strategies to promote participation in research involving genetic testing.

Our results and the results of prior studies may provide guidance to biobanks and genetic researchers for improving the ways they address motivators for, and concerns about, genetic research and testing. Recruitment materials that highlight the potential to satisfy participants’ altruistic intentions including information about how their participation may help others can be used to better engage potential research participants. Similarly, specifically addressing return of results and stating clearly whether they will, or will not, be returned is important for recruitment materials. Also including detailed information in recruitment materials about the steps that will be taken to maximize security and limit use of participant data may ease participant concerns and should be reemphasized in participant consent forms and FAQs. Further research is warranted for determining the effectiveness of different modes of communicating data safeguards, such as links within consents to educational videos, or webinars for participants to have questions answered by the study team.

Acknowledgments

Data used in this study were provided by the Kaiser Permanente Research Bank (KPRB). Access to KPRB data may be requested by application to the KPRB via ResearchBankAccess@kp.org. We also acknowledge Rayven A. Irons, Andrew Nakatani, Gina Napolitano, Ryan K. Rhodes, and Tara A. Rhodes for their service on the study advisory panel and contributions to survey development.

Statement of Ethics

The study protocol was approved by the KP Mid-Atlantic States IRB committee on human research (FWA #00002344; IRB #00000783). All study participants provided an online consent by agreeing to complete the survey in the online acknowledgment page prior to completing the study survey.

Conflict of Interest Statement

The authors have no conflicts of interest to declare.

Funding Sources

The Kaiser Permanente Research Bank (KPRB) is funded by Kaiser Foundation Health Plan/Hospitals operational funds. This project was also supported in part by Kaiser Permanente’s “Garfield Memorial Fund.” These sponsors had no role in the conduct of this study, nor in the preparation of this manuscript.

Author Contributions

Sarah D. Madrid and Erica Blum-Barnett: conception of work, acquired and analyzed data, interpreting of data, drafting of manuscript, and final approval of manuscript. Amy A. Lemke: conception of work, pre-interpreting and interpreting of data, critical review and revision of the manuscript, and final approval of manuscript. Vivian Pan: analyzed data, interpreting of data, critical review and revision of the manuscript, and final approval of manuscript. Valerie Paolino and Elizabeth A. McGlynn: interpreting of data, critical review and revision of the manuscript, and final approval of manuscript. Andrea N. Burnett-Hartman: conception of work, interpreting of data, critical review and revision of the manuscript, and final approval of manuscript.

Data Availability Statement

Access to the de-identifed data on demographic characteristics used in this study may be obtained by application to the Kaiser Permanente Research Bank at kp.org/researchbank/researchers. However, open-ended text responses will not be shared due to concerns over identifiability of survey participants.

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