Enhancing Biospecimen Knowledge Among Health Care Providers and Representatives From Community Organizations

Abstract

In a personalized medicine environment, it is necessary to have access to a range of biospecimens to establish optimal plans for disease diagnosis and treatment for individual patients. Cancer research is especially dependent on biospecimens for determining ideal personalized treatment for patients. Unfortunately, the vast majority of biospecimens are collected from non-Hispanic White individuals; thus, minority representation is lacking. This has negative implications for comprehensive cancer treatment. The Geographic Management of Cancer Health Disparities Program (GMaP) Region 6 implemented a series of biospecimen education seminars adapted from the Biospecimen and Biobanking module of an existing Cancer Education and Training Program. Regional GMaP partners participated in a train-the-trainer webinar to familiarize themselves with the training materials. Participants trained by the trainers completed pre- and posttests to document changes in awareness, knowledge, and intention. Nine biospecimen education seminars were offered in 2013; 255 health care professionals and representatives from community organizations attended. Participants demonstrated a significant increase in knowledge, intention to donate samples, and intention to talk to patients about biospecimen sample donation. Representatives from community organizations had more improvement on knowledge scores than health care providers. Participation in a well-designed biospecimen education program may ameliorate some of the distrust of biomedical research experienced by racial/ethnic minorities and, in turn, increase needed minority representation in biospecimen collection.

Keywords

biospecimen education health disparities cancer education diversity minority research participation

Introduction

Cancer research and treatment are increasingly dependent on biospecimens for determining optimal personalized treatment for cancer patients; research on biospecimens can help determine a patient’s prognosis, select appropriate treatments, or measure responses to treatment (John et al., 2004; Moore et al., 2009; Vaught, 2006). The availability of a diverse and representative supply of high-quality biospecimens is essential to ongoing cancer research. Unfortunately, the vast majority of biospecimens are collected from non-Hispanic White (NHW) individuals; representation of minority, ethnically diverse, and underrepresented groups in biospecimens is lacking, making it difficult to understand biological differences in cancers.

Background

To better understand, address, and make personalized medicine relevant to diverse groups, engaging underrepresented individuals in research participation that involves biospecimen donation is critical (Albain, Unger, Crowley, Coltman, & Hershman, 2009). Research with biospecimens allows researchers to examine the genetic basis of a disease as well as the response to treatment. Such research can help determine a patient’s prognosis, select appropriate treatments, and measure responses to treatment (Moore et al., 2009). Without representation from people other than NHWs, it is difficult to develop state-of-the-art treatment for the underrepresented.

Barriers to such participation in research are complex and range from social reasons such as the mistrust of many racial and ethnic groups due to historical and programmatic mistreatment in medicine (e.g., Tuskegee, Henrietta Lacks), to a cultural fear of donating samples (e.g., Chomorro, Native Americans, African Americans in the United States), and to lack of awareness or access to information about the need to donate samples (Corbie-Smith et al., 2007; Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999; Durant et al., 2007; Hagiwara et al., 2014; Katz et al., 2007; Vaught, Lockhart, Thiel, & Schneider, 2007). In recent years, the efforts to gather biospecimens from underrepresented populations have focused on the importance of working with such communities to promote awareness of the need for biospecimens (Dang et al., 2014; Erwin et al., 2012; Hohl, Gonzalez, Carosso, Ibarra, & Thompson, 2014; Kiviniemi et al., 2012). Subsequently, much recent research has underscored the value of community engaged approaches in increasing the number of biospecimens from underrepresented groups (Erwin et al., 2012; Hohl et al., 2014; Kiviniemi et al., 2012; O’Doherty, Hawkins, & Burgess, 2012).

Although working with communities is a necessary part of increasing biospecimen donation, it is not sufficient to the end goal of biospecimen collection. A system must be established to encourage health care providers and their ancillary staff, as well as community organizations’ representatives; to talk to individuals about the need for biospecimen donation; and to offer opportunities to do so. Establishing partnerships between academia, health care systems, and credible community organizations presents opportunities to train stakeholders about biospecimen donation. Mobilizing community organizations to raise awareness about biospecimen donation in underrepresented communities and partnering with facilities that collect biospecimens can potentially increase the diversity of samples in biorepositories that are available to investigate the biological basis of cancer.

In basic cancer research, the lack of standardized, high-quality human biospecimens has been viewed as a roadblock to the rapid development of molecular diagnostics and therapeutics. Consequently, significant efforts in the National Cancer Institute (NCI) have focused on the retooling of processes and methods in national biorepositories that house human biospecimens for cancer research (Moore et al., 2009). Although these efforts have focused on the technical aspects of biospecimen collection, much less attention has been paid to the limited representation of ethnic minority samples in existing biorepositories. As a result, the NCI’s efforts to gain high-quality biospecimens for cancer research is more likely to benefit NHW populations because biospecimens from this group are more readily obtained; thus, cancer health disparities may increase. In the same way that an ethnically diverse cohort is necessary to apply the results of cancer clinical trials to the entire U.S. population (Fayter, McDaid, & Eastwood, 2007), the availability of ethnically diverse biospecimens is necessary to ensure that the molecular diagnostics and therapeutics that are developed are useful to all members of our diverse society. To meet this need, all regions of the Geographic Management of Cancer Health Disparities Program (GMaP) were charged with prioritizing collection of biospecimens for cancer research from populations underrepresented in biobanks.

GMaP, funded by the NCI, consists of six regional networks dedicated to working with groups across the country in order to advance cancer health disparities research and training (NCI, n.d.). Region 6, coordinated through Fred Hutchinson Cancer Research Center (FHCRC), encompasses Alaska, Washington, Oregon, California, Montana, Idaho, Nevada, Hawaii, Guam, and American Samoa. It is the largest of the six regional hubs and the most ethnically diverse. GMaP Region 6 is composed of 18 partner institutions involved in cancer health disparities research within the Region 6 catchment area. Representatives from the partner institutions make up an overarching coordinating committee for the regional initiative. The ongoing, concerted efforts of the coordinating committee provided the regional GMaP program a well-managed, robust infrastructure for the implementation of the biospecimen education program.

In this study, GMaP Region 6 investigators conducted a series of biospecimen education seminars in an effort to increase understanding of the barriers around biospecimen donation among communities in the region. Working with groups that serve various underrepresented populations, the overall goal of this project was to help bridge the gap between researchers, health care professionals, and representatives of community organizations by providing reciprocal learning opportunities around biospecimen donation and collection. Toward that end, we implemented a series of educational seminars to (a) provide education to community organizations on the importance of providing biospecimens to advance cancer research and (b) to assess the level of readiness of providers and ancillary staff in cancer institutions serving diverse communities to participate in biospecimen collection efforts. Here we report the outcome of that education.

Method

The GMaP Region 6 coordinating committee collaboratively developed a plan to offer biospecimen educational seminars across the region. In 2012, a request for applications was released to the regional partner institutions, inviting them to apply to host a biospecimen education seminar. Applicants were asked to submit a four-page proposal and accompanying budget. Seven partner organizations in Washington, Oregon, California, Hawaii, and Guam applied; subsequently, all seven projects were approved for funding. Two funded organizations opted to hold two education events; thus, a total of nine biospecimen education seminars took place across GMaP Region 6 between February and August 2013.

Prior to implementation of the events, partner institution staff selected to conduct the biospecimen seminars at each funded site were required to participate in a train-the-trainer webinar to familiarize themselves with the training materials. The webinar training was hosted by the NCI’s National Outreach Network (NON) Community Health Educator (CHE) housed at FHCRC, one of the authors of the Cancer 101 curriculum. The webinar training included an in-depth review of the training curriculum, pre- and posttest instruments, and a question-and-answer period. The webinar participants who were trained in the biospecimen curriculum consisted primarily of NCI’s NON CHEs in the GMaP region. NON CHEs act as liaisons between researchers and communities by providing tailored information to the population they serve, which supports efforts to build trust and work with communities in order to raise awareness about biospecimens for cancer research.

Training Curriculum Content

The training curriculum consisted of the Biospecimen and Biobanking module of the expanded Cancer 101: A Cancer Education and Training Program (Cancer 101). Cancer 101 is an evidence-based, evaluated education tool that was created in 2002 through a collaboration between the Spirit of EAGLES Community Networks Program, the Northwest Portland Area Indian Health Board’s Northwest Tribal Cancer Control Project, and the former NCI’s Cancer Information Service–Northwest Region to increase understanding about cancer within Northwest tribal communities (Hill et al., 2010). The Cancer 101 curriculum is based on social cognitive theory. By providing trainings to community members, Cancer 101 trainers help participants build self-efficacy around cancer knowledge and attitudes, and then set behavioral goals to modify risk factors for cancer so that they can work to change behaviors. As participants adopt new and healthier behaviors, changes occur not only in their own person but also in their environment.

In 2011, the NON CHE at FHCRC updated and expanded the original Cancer 101 curriculum to include a Biospecimen and Biobanking module (Briant, Garrett Hill, & Lopez, 2011). This module defines what biospecimens are, explains how they are collected, and describes why biospecimens are important in research. It also explains the ethical, legal, and social considerations related to tissue and sample donation as well as how a donor’s personal and medical information is protected. The module was tailored for GMaP regional use and standardized pre- and postassessments were developed.

Theoretical Approach

We used a near-peer teaching model to train researchers, health care professions, and representatives of community organizations through the biospecimen education seminars. Near-peer relationships are characterized by the pairing of individuals who are slightly more advanced in learning and/or training with individuals who are less advanced. Studies find that peer-led instruction is effective in increasing student learning. Both leaders and students benefit from the enhanced learning experience (Brownell & Swaner, 2010; Cracolice & Deming, 2001; Lave & Wenger, 1991). Peer leaders increase their understanding of the subject matter and develop an increased sense of responsibility and confidence. In fact, when educational seminar participants at one site were polled about what they would do with the information they received, they provided several concrete examples for advancing knowledge in their own learning environments and agencies. This type of training holds promise for not only advancing the understanding of biospecimens and their uses but also increasing knowledge, responsibility, and confidence of the trainers.

Participant Recruitment/Informed Consent

An overall goal of the biospecimen education seminars was to provide information and education about biospecimens to people who engage with community members. Each institution was asked to provide an overview of their target audience and recruitment strategies in their proposal. These strategies were used by staff who were responsible for planning and implementing the seminar at each site. All the funded institutions recruited both community organization representatives providing services to diverse communities, and health professionals to participate in their local education seminar. Recruitment methods for participants consisted of e-mail notifications, promotional flyer distribution, and word of mouth.

Biospecimen Education Seminars

Biospecimen education seminars consisted of mixed audiences of health care providers, health care professionals, and representatives from community organizations. To ensure that the biospecimen educational seminars were consistently implemented across the region, the same presentation slides and pre- and postassessments were used at all the education seminars across all sites. The NON CHE from FHCRC facilitated or cofacilitated six of the nine biospecimen education seminars. The other three seminars were facilitated by two NON CHEs from other sites. An informed consent statement was read aloud prior to the start of the training. Participants were informed that their participation in the training was voluntary and that they had the option to skip questions they did not feel comfortable answering on the pre-/postassessments. Biospecimen education seminars typically lasted between 2 and 3 hours.

Assessment of the Biospecimen Education Seminars

In all seminars, pre- and postassessments were administered to document changes in awareness, knowledge, and intention to promote collection of biospecimens among participants. Due to limited resources, pre/post data were collected with a computerized audience response system (ARS) at the majority of seminars (seven of the nine). ARS allowed matching of pre/post by participant, but data were anonymous, which made the collection of data beyond the training sessions unfeasible. Pre- and postassessments were administered to measure participants’ knowledge about biospecimens and biobanking: types of biospecimens, uses for biospecimens, the informed consent process, and biobank or biorepository locations. Attitudes toward biospecimen donation were also measured, including perceived barriers to donation and likelihood of donating.

Demographic variables collected on the preassessment included gender, age, education, race/ethnicity, and occupation (health care provider, health care professional or non–health care provider). Respondents who self-identified as a health care provider (physician or nurse) or health care professional (health educator, social worker, etc.) were also asked how often they talk to patients/clients about biospecimen donation.

Knowledge about biospecimens, biobanking, and informed consent was assessed through seven agree/disagree/unsure questions. Participants were asked if cells, blood, and urine are considered biospecimens; if biospecimens help researchers learn how to treat cancer; and if a person’s tissue removed during surgery can be stored for future use. Participants were also asked to answer a multiple-choice question asking why donating biospecimens is important. The multiple choice answers included (a) to look for ways to prevent illness (e.g., cancer, diabetes, heart disease), (b) to develop tests to detect specific types of illnesses, (c) to find ways to target treatments to improve survivorship from illnesses, (d) all of the above, and (e) none of the above. Knowledge about the informed consent process was assessed by two agree/disagree/unsure questions including whether or not a person who donates his or her tissue is able to decide what kind of research the sample is used for and if informed consent is a one-time information session.

Participants’ attitudes about biospecimen donation were assessed by responses to agree/disagree/unsure questions. Participants were asked if biomedical studies can help future generations by advancing knowledge on how to fight diseases; if by taking part in a biomedical study they will be helping others; and whether or not they would participate in a research study if asked to donate a biological sample or biospecimen (e.g., blood, urine, saliva, cheek cells or tissue). On the postassessment, respondents who self-identified as a health care provider (doctor or nurse) or health care professional (health educator, social worker, etc.) were asked how often they would talk to patients/clients about biospecimen donation. All study materials were approved by the FHCRC Institutional Review Board.

Analysis

To analyze the knowledge questions and intention to donate or talk to patients, we used McNemar’s exact test for paired binary data (Agresti, 2014). We coded the responses to the knowledge questions as correct or incorrect. For the intention to donate, we combined strongly agree and agree into a single category and undecided, disagree, and strongly disagree into a single category. Similarly, with intention to talk to patients, we combined always, often, and sometimes into a single category and rarely and never into a single category.

To determine an overall knowledge score, we averaged the correct/incorrect answers of the knowledge questions, (correct answer = 1, incorrect answer = −1). If a participant had missing values for any of the questions, his or her knowledge score was marked as missing. To determine if knowledge score varied by pre- and postassessment and occupation, we fit a linear mixed effects model with fixed effects for assessment period, occupation, training state, assessment period by occupation, assessment period by training state/territory, gender, age, and education. To account for repeated measures, we included a random intercept for each subject (Faraway, 2006).

All analyses were conducted using the R programming language (R Development Core Team, 2011).

Results

Nine educational seminars took place across GMaP Region 6. Table 1 summarizes the locations and number of participants. California had the largest number of participants, followed by Hawaii. One of the partners in California offered two educational sessions. Two educational sessions took place in Hawaii, but they were hosted by two different partners. A total of 255 individuals attended the sessions, and 235 participants completed both pre- and postassessments.

Table 1

Location and Number of Trainees

Location (No. of Seminars)	No. of Participants (n)	% of Total Participants
California (3)	92	36.1
San Francisco State University	33
Pacific Island Health Partnership	10
Pacific Island Health Partnership	49
Guam (1)	22	8.6
University of Guam	22
Hawaii (2)	87	34.1
University of Hawaii	42
Papa Ola Lokahi	45
Oregon (1)	39	15.3
Oregon Health and Science University	39
Washington (2)	15	5.9
Fred Hutchinson Cancer Research Center	15

Table 2 shows the characteristics of participants. The majority were females aged 30 to 59 years. Most participants had a higher education degree, and they were evenly distributed in terms of being a health care professional (50.2%) or not (49.8%). Over half (61%) of attendees identified themselves as members of an underrepresented group.

Table 2

Characteristics of Participants at Baseline^a

Characteristic	n	%
Gender
Female	171	73.4
Age (years)
18-29	57	24.7
30-59	114	49.4
60+	60	25.9
Education
<High school	35	14.9
Some college or college degree	125	53.2
Advanced degree	75	31.9
Occupation
Health care professional	118	50.2
Not in health care	117	49.8
Race/ethnicity
Hispanic	20	11.6
Black or African American	3	1.7
American Indian or Alaskan Native	2	1.2
Pacific Islander	47	27.2
Non-Hispanic White	67	38.7
More than one of the above	34	19.6

Numbers may not add to 235 depending on number of individuals who responded to particular questions.

Table 3 indicates the pre- and postassessment responses to the knowledge questions. Overall, there were significant increases in all knowledge variables except biomedical studies helping future generations, and donating biospecimens would help others. Both of these were rated highly in the preassessment as well as the postassessment. Table 3 also shows the pre- and postassessment by health care providers compared to non–health care providers. In preassessment, health care providers where more likely to know that informed consent may involve multiple consent forms, and more likely to believe that many underrepresented individuals had a fear or distrust of the medical system. At postassessment, health care providers significantly increased their scores on two questions (individuals decide what the samples are used for, and informed consent is a one-time process; both false), while non–health care providers increased their scores significantly on four items.

Table 3

Changes in Knowledge From Pre- to Postassessment^a

	Preassesment			Postassessment			Pre–Post
Knowledge Question	HCP Correct (%)	Not HCP Correct (%	p	HCP Correct (%)	Not HCP Correct (%)	p	HCP p	Not HCP p
Biospecimens refer to biological materials, such as cells, blood, and urine used for research.	92.8	86	.1302	94.4	97.1	.4989	.999	.0002
Biospecimens play an important role in helping researchers learn how to treat cancer.	94.7	96.4	.7483	99.1	99	.9999	.0313	.625
A person’s tissue, such as cancer cells removed during surgery, can be stored for future research.	86.4	83.2	.5781	93.5	94.2	.9999	.1435	.0034
If a person donates their tissue or blood to a study, they always get to decide what the samples are used for.	56.2	53.1	.6885	72	57.8	.042	.0033	.7201
Informed consent is a one-time information session.	60.2	38.8	.0015	72.5	52	.0027	.0243	.029
Biomedical studies can help future generations by advancing knowledge on how to fight a disease.	95.6	96.6	0.7463	98.2	98.1	.9999	.6875	0.6875
By taking part in a biomedical study, I will be helping others	87.7	92.2	.2788	90.7	96.1	.1673	.6291	.125
Many people will not participate in a biomedical study because of fear or a distrust of biomedical research.	77.6	65.5	.0581	88.9	87.3	.8319	.0023	.0001

The percentage answering correctly for each knowledge question in the pre- and posttest by occupation (health care provider [HCP] versus not HCP). p values for the pre- and posttest answers are calculated using Fisher’s exact test. The p values for the pretest–posttest comparison were calculated using McNemar’s test for paired binary data using the number of discordant pairs for each question (data not shown). For the purpose of the analysis, “not sure” was recorded as answering incorrectly.

Table 4 indicates differences between pre- and postassessment in terms of intention to participate in a research study where biospecimens are being collected. There was a significant difference between pre- and postassessments with more participants strongly agreeing and agreeing they would participate. Furthermore, after having completed the training, significantly more health care provider and health care professional respondents stated they would talk to patients/clients about biospecimen donation.

Table 4

Intention to Donate and to Talk to Patients^a

Intention Item	Pretest n (%)	Posttest n (%)	p
“I would participate in a research study if asked to contribute a biological sample.” (Health care professionals)
Strongly agree/agree	80 (70.2)	86 (80.4)
Undecided	30 (26.3)	18 (16.8)
Strongly disagree/disagree	4 (3.5)	3 (2.8)	.0768
“I would participate in a research study if asked to contribute a biological sample.” (Non–health care professionals)
Strongly agree/agree	87 (75.7)	86 (82.7)
Undecided	24 (20.9)	14 (13.5)
Strongly disagree/disagree	4 (3.5)	4 (3.8)	.146
“How often do you/will you talk to patients about biospecimen donation?” (Asked only of health care professionals)
Always/often	28 (20.7)	132 (76.8)
Sometimes	12 (8.9)	47 (27.3)
Rarely/never	107 (79.2)	40 (23.3)	<.0001

p values are calculated using McNemar’s test for paired binary data using the discordant pairs for each question (data not shown). For the purpose of this analysis, strongly agree is combined with agree; undecided, disagree, and strongly disagree are combined. Similarly, always, often, and sometimes are combined; rarely and never are combined.

When reviewing the overall difference between the pre- and postassessment of the knowledge variables controlling for age, gender, and education, the difference was significant (p = .007).

Discussion

In this study, where numerous underrepresented population members were included, the training in the importance of providing biospecimens increased knowledge, intention to donate, and intention to talk to patients about donation. Previous studies also have demonstrated an increase in knowledge and intention to donate among underrepresented groups trained in the importance of biospecimen donation (Gao et al., 2014; Tong et al., 2014).

Study participants across all nine sessions in GMaP Region 6 showed a lack of initial knowledge about biospecimens and biospecimen collection. Of eight questions about knowledge, postassessment differences were significant in six of the areas. Many of the knowledge questions that had poor preassessment knowledge focused on the rights of participants in biospecimen collection. For example, 49.6% of respondents thought that the Human Subjects Boards could address all aspects of biospecimen collection in one “informed consent” session. The use of biospecimens is complex and presents complicated issues, such as ownership, genetic testing, future uses, and protection of patient rights by Human Subjects Boards (Beskow & Dean, 2008; Budimir et al., 2011; Vaught et al., 2007; Yassin et al., 2010). A large proportion of our respondents at preassessment (55.1%) believed that a person who donates biospecimens always has the right to decide any use of the specimens. Again, this varies by Human Subjects Boards (Budimir et al., 2011). Increasingly, participants’ biospecimens are placed in a repository under the stewardship of a researcher who many decide the future uses of the biospecimen (Hughes, Barnes, & Watson, 2010).

Several studies have found that members of minority groups express high willingness to participate in biospecimen donation (Katz et al., 2006; Wendler et al., 2005). However, diverse groups remain underrepresented in research studies that involve biospecimen collection (Corbie-Smith, 2004; Corbie-Smith, Thomas, & St. George, 2002; Hussain-Gambles, Atkin, & Leese, 2004). Barriers to participation are varied and may also vary by the specific population in which such requests are made. Among African Americans, for example, there is a strong fear of exploitation by researchers and the biomedical system (Corbie-Smith et al., 1999; Corbie-Smith et al., 2002; Katz et al., 2007). Some American Indian/Alaska Natives have expressed a distrust of studies funded by the U.S. government and a fear of lack of autonomy over their samples or have cultural and spiritual beliefs about keeping the body intact for burial (Buchwald et al., 2006). Additionally, several underrepresented groups have demonstrated a fear of participation due to lack of transparency and low comprehension of the informed consent process (Corbie-Smith et al., 1999; Shaw, Robinson, Starks, Burke, & Dillard, 2013; Ulrich et al., 2013).

Surprisingly few participants (71.6%) were aware that many underrepresented individuals would not participate in biospecimen donation because of fear or distrust of biomedical research. In discussions during the seminars, efforts were made to acquaint the participants with the more egregious examples of unethical biomedical research (e.g., Tuskegee, research on prisoners, Henrietta Lacks); by the postassessment, a significant increase was seen in the number of participants who understood the examples of distrust of the biomedical enterprise.

Interestingly, there were differences in both pre- and postassessment between health care providers and non–health care providers. Health care providers were more likely than non–health care providers to know that informed consent could be a multistage process at baseline; they were also more likely to know that many people fear or distrust biomedical research. At postassessment, however, there were significant changes among health care providers in terms of those two variables, suggesting that health care providers had much to learn. Furthermore, there were significant increases in knowing that biospecimens help researchers learn how to treat cancer and that individuals did not always get to decide for what their samples were used. This suggests that health care providers too have much to learn about biospecimen donation.

It was not so surprising that non–health care providers increased significantly more knowledge compared to health care providers. One might expect health care providers to be more familiar with the field than non–health care providers. Nevertheless, there were areas of nonsignificant change. Perhaps most striking was significant change in the knowledge that many people have a fear or distrust of biomedical research, with a 22% point change between pre- and postassessment. The other factors (definition of biospecimens, removal of tissue during surgery, and informed consent) are more likely to be known by health care providers who work in the medical field.

As noted, a significant number of health care providers participated in this study (50.2%). At baseline, very few (20.7%) always or often talked to their patients about biospecimen donation. This may explain part of the lack of minority participation in biobanking programs, as some studies have shown that members of minority groups demonstrate high willingness to participate in biobanking programs but are not engaged or asked to participate in biospecimen donation by clinicians; thus participation among these groups remains low (Durant et al., 2007; Hagiwara et al., 2014; Rodriguez, Torres, & Erwin, 2013; Wendler et al., 2005). After the seminars, however, the percentage of health care providers who intended to always or often speak to patients was 49.5%, a significant increase. Other studies have found similar results after training (Dang et al., 2014; Gao et al., 2014; Tong et al., 2014); however, there is a dearth of studies examining the actual practice of providers after training in providing content about biospecimens.

A number of studies have shown that training individuals on the processes and benefits of biospecimen donation may increase both intention and actual participation in donation (Dang et al., 2014; Gao et al., 2014; Luque et al., 2012; Rodriguez et al., 2013; Tong et al., 2014). Such findings support the underlying assumption of this study. If underrepresented groups can increase their knowledge of the benefits of biospecimen donation, if they are informed in a culturally relevant way, and if they are assured that their tissue will be treated with respect and integrity, they are likely to be better prepared to donate (Wendler et al., 2005).

There is little doubt that biospecimen donation is an essential part of progress in cancer research and treatment. Equally important is the notion that biospecimen donation must represent the entire range of population types in the United States; this includes not only NHWs but also racial/ethnic minorities and other underrepresented populations. Without representation, a sizeable portion of the U.S. population will remain isolated from the potential benefits of treatment of diseases such as cancer. This representation is critical to increasing the rigor and impact of studies aimed at better understanding the biological basis of cancer and at developing the drugs that will benefit all members of our society.

Although this work did not include an examination of whether or not underrepresented individuals were likely to donate biospecimens, it has value in examining the knowledge and intention of intermediaries who can have an influence on the underserved. If health care providers, professionals, and representatives of community organizations understand the various aspects of biospecimen donation and are able to transmit accurate information to the underserved, it is more likely that the underserved will make informed decisions as to whether or not to donate biospecimens.

GMaP Region 6 serves the most diverse populations of all the GMaP hubs, and we were able to extend the educational seminars from Latinos in Washington State to Latinos, Asians, and Pacific Islanders in California; Asian and Pacific Islanders in Hawaii; and Chomorro and Pacific Islanders in Guam. This biospecimen education effort supports a concept underlying the GMaP regional networks—researchers in the region are able to advance cancer health disparities research and training by reaching the constituencies they serve.

This study has a major limitation. Since pre- and postassessments were done at the beginning and end of each seminar session, we were unable to measure actual change in behavior, relying only on perceived intention to change. Intention does not always result in behavior change. Unfortunately, lack of resources prevented us from following up with trained individuals to ascertain if their intention was related to subsequent practice. Future strategies would be to contact trainees some time after the seminars to assess the congruence of their behavior with intention. This is especially true for the health care providers who have opportunities to talk to underrepresented patients about the importance of biospecimen donation. Nevertheless, the seminars were successful in increasing knowledge and building awareness around the importance of biospecimen donation and collection.

Conclusion

A series of educational seminars in the importance of biospecimen donation and collection was held throughout GMaP Region 6, the largest and most diverse of the GMaP hubs in the United States. Educational seminar sessions were preceded with a preassessment and concluded with a postassessment. There was a significant increase in knowledge in six of nine knowledge questions and in intention to donate samples and to talk to patients about biospecimen samples. This type of education may ameliorate some of the distrust of biomedical research experienced by racial/ethnic minorities and, in turn, increase needed minority representation in biospecimen collection. Implications of this study are that education in the importance of biospecimen collection leads to increased intention to talk to underrepresented patients and community members about the importance of biospecimen donation to increase the development of treatment for cancer. Future research should follow trained individuals to ascertain that intention to change translates into actual change. It is also necessary to examine biospecimen repositories to determine if samples are being banked from the underrepresented. This study initiates a first step in the process to promote awareness of the important role biospecimens in cancer research and ultimately to support biospecimen donation among the underrepresented. Next steps include follow-up with partner institutions in the GMaP region to see if this initial series of seminars led to increased implementation of culturally relevant educational seminars on biospecimens in their local communities.

Footnotes

Acknowledgements

The authors would like to thank the staff at all Region 6 GMaP (Geographic Management of Cancer Health Disparities Program) sites who participated in the coordination, recruitment, and implementation of the Biospecimen Education Program: Maribel Baez, Niyati Desai, Jermy-Leigh Domingo, Genoveva Ibarra, Jane Ka’ala Pang, Hali Robinett, Gil Suguitan, and Zul Surani.

This project was supported by a grant from the National Institutes of Health, National Cancer Institute (U54CA132381-05S2). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute, GMaP, or Fred Hutchinson Cancer Research Center.

References

Agresti

(2014). Categorical data analysis (3rd ed.). New York, NY: Wiley.

Albain

K. S.

Unger

J. M.

Crowley

J. J.

Coltman

C. A.

Hershman

D. L.

(2009). Racial disparities in cancer survival among randomized clinical trials patients of the Southwest Oncology Group. Journal of the National Cancer Institute, 101, 984-992.

Beskow

L. M.

Dean

(2008). Informed consent for biorepositories: Assessing prospective participants’ understanding and opinions. Cancer Epidemiology, Biomarkers & Prevention, 17, 1440-1451.

Briant

Garrett Hill

Lopez

(2011). Cancer 101: A cancer education and training program. Retrieved from https://cancer101curriculum.wordpress.com/about/

Brownell

J. E.

Swaner

L. E.

(2010). Five high-impact practices: Research on learning outcomes, completion, and quality. Washington, DC: Association of American Colleges and Universities.

Buchwald

Mendoza-Jenkins

Croy

McGough

Bezdek

Spicer

(2006). Attitudes of urban American Indians and Alaska Natives regarding participation in research. Journal of General Internal Medicine, 21, 648-651. doi:10.1111/j.1525-1497.2006.00449.x

Budimir

Polašek

Marušić

Kolčić

Zemunik

Boraska

. . . Rudan

(2011). Ethical aspects of human biobanks: A systematic review. Croatian Medical Journal, 52, 262-279.

Corbie-Smith

Thomas

S. B.

St.George

D. M.

(2002). Distrust, race, and research. Archives of Internal Medicine, 162, 2458-2463.

Corbie-Smith

Thomas

S. B.

Williams

M. V.

Moody-Ayers

(1999). Attitudes and beliefs of African Americans toward participation in medical research. Journal of General Internal Medicine, 14, 537-546.

10.

Corbie-Smith

Williams

I. C.

Blumenthal

Dorrance

Estroff

S. E.

Henderson

(2007). Relationships and communication in minority participation in research: Multidimensional and multidirectional. Journal of the National Medical Association, 99, 489-498.

11.

Corbie-Smith

G. M.

(2004). Minority recruitment and participation in health research. North Carolina Medical Journal, 65, 385-387.

12.

Cracolice

M. S.

Deming

J. C.

(2001). Peer-led team learning. Science Teacher, 68(1), 20-24.

13.

Dang

J. H.

Rodriguez

E. M.

Luque

J. S.

Erwin

D. O.

Meade

C. D.

Chen

M. S.

Jr. (2014). Engaging diverse populations about biospecimen donation for cancer research. Journal of Community Genetics, 5, 313-327.

14.

Durant

R. W.

Davis

R. B.

St. George

D. M.

Williams

I. C.

Blumenthal

Corbie-Smith

G. M.

(2007). Participation in research studies: Factors associated with failing to meet minority recruitment goals. Annals of Epidemiology, 17, 634-642. doi:10.1016/j.annepidem.2007.02.003

15.

Erwin

D. O.

Moysich

Kiviniemi

M. T.

Saad-Harfouche

F. G.

Davis

Clark-Hargrave

. . . Walker

(2012). Community-based partnership to identify keys to biospecimen research participation. Journal of Cancer Education, 28, 43-51. doi:10.1007/s13187-012-0421-5

16.

Faraway

J. J.

(2006). Extending the linear model with r (texts in statistical science) (1st ed.). Boca Raton, FL: Chapman & Hall/CRC.

17.

Fayter

McDaid

Eastwood

(2007). A systematic review highlights threats to validity in studies of barriers to cancer trial participation. Journal of Clinical Epidemiology, 60, 990-1001.

18.

Gao

G. X.

Tan

Fang

Weaver

Jin

. . . Godwin

A. K.

(2014). Culturally appropriate education intervention on biospecimen research participation among Chinese Americans. Cancer Epidemiology, Biomarkers & Prevention, 23, 383-391.

19.

Hagiwara

Berry-Bobovski

Francis

Ramsey

Chapman

R. A.

Albrecht

T. L.

(2014). Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks. Journal of Cancer Education, 29, 580-587. doi:10.1007/s13187-013-0586-6

20.

Hill

Briant

Bowen

Boerner

Lopez

Vinson

(2010). Evaluation of Cancer 101: An educational program for native settings. Journal of Cancer Education, 25, 329-336. doi:10.1007/s13187-010-0046-5

21.

Hohl

S. D.

Gonzalez

Carosso

Ibarra

Thompson

(2014). “I did it for us and I would do it again”: Perspectives of rural Latinos on providing biospecimens for research. American Journal of Public Health, 104, 911-916.

22.

Hughes

S. E.

Barnes

R. O.

Watson

P. H.

(2010). Biospecimen use in cancer research over two decades. Biopreservation and Biobanking, 8(2), 89-97.

23.

Hussain-Gambles

Atkin

Leese

(2004). Why ethnic minority groups are under-represented in clinical trials: A review of the literature. Health & Society Care in the Community, 12, 382-388. doi:10.1111/j.1365-2524.2004.00507.x

24.

John

E. M.

Hopper

J. L.

Beck

J. C.

Knight

J. A.

Neuhausen

S. L.

Senie

R. T.

. . . Boyd

(2004). The Breast Cancer Family Registry: An infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer. Breast Cancer Research, 6, R375-R389.

25.

Katz

R. V.

Green

B. L.

Kressin

N. R.

Claudio

Wang

M. Q.

Russell

S. L.

(2007). Willingness of minorities to participate in biomedical studies: Confirmatory findings from a follow-up study using the Tuskegee Legacy Project Questionnaire. Journal of the National Medical Association, 99, 1052-1060.

26.

Katz

R. V.

Russell

S. L.

Kegeles

S. S.

Kressin

N. R.

Green

B. L.

Wang

M. Q.

. . . Claudio

(2006). The Tuskegee Legacy Project: Willingness of minorities to participate in biomedical research. Journal of Health Care for the Poor and Underserved, 17, 698-715.

27.

Kiviniemi

M. T.

Saad-Harfouche

F. G.

Ciupak

G. L.

Davis

Moysich

Hargrave

N. C.

. . . Erwin

D. O.

(2012). Pilot intervention outcomes of an educational program for biospecimen research participation. Journal of Cancer Education, 28(1), 52-59. doi:10.1007/s13187-012-0434-0

28.

Lave

Wenger

(1991). Situated learning: Legitimate peripheral participation. Cambridge, England: Cambridge University Press.

29.

Luque

Quinn

Montel-Ishino

Arevalo

Bynum

Noel-Thomas

. . . Meade

(2012). Formative research on perceptions of biobanking: What community members think. Journal of Cancer Education, 27(1), 91-99. doi:10.1007/s13187-011-0275-2

30.

Moore

H. M.

Compton

C. C.

Lim

M. D.

Vaught

Christiansen

K. N.

Alper

(2009). 2009 Biospecimen research network symposium: Advancing cancer research through biospecimen science. Cancer Research, 69, 6770-6772.

31.

National Cancer Institute. (n.d.). Geographical management of cancer health disparities program. Retrieved from http://crchd.cancer.gov/inp/gmap-overview.html

32.

O’Doherty

K. C.

Hawkins

A. K.

Burgess

M. M.

(2012). Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation. Social Science & Medicine, 75, 1604-1611.

33.

R Development Core Team. (2011). A language and environment for statistical computing. Vienna, Austria: R Foundation for Statistical Computing.

34.

Rodriguez

Torres

Erwin

(2013). Awareness and interest in biospecimen donation for cancer research: Views from gatekeepers and prospective participants in the Latino community. Journal of Community Genetics, 4, 461-468. doi:10.1007/s12687-013-0152-2

35.

Shaw

J. L.

Robinson

Starks

Burke

Dillard

D. A.

(2013). Risk, reward, and the double-edged sword: Perspectives on pharmacogenetic research and clinical testing among Alaska Native people. American Journal of Public Health, 103, 2220-2225. doi:10.2105/ajph.2013.301596

36.

Tong

E. K.

Fung

L.-C.

Stewart

S. L.

Paterniti

D. A.

Dang

J. H.

Chen

M. S.

(2014). Impact of a biospecimen collection seminar on willingness to donate biospecimens among Chinese Americans: Results from a randomized, controlled community-based trial. Cancer Epidemiology, Biomarkers & Prevention, 23, 392-401.

37.

Ulrich

Thompson

Livaudais

J. C.

Espinoza

Cordova

Coronado

G. D.

(2013). Issues in biomedical research: What do Hispanics think? American Journal of Health Behavior, 37(1), 80-85. doi:10.5993/AJHB.37.1.9

38.

Vaught

J. B.

(2006). Biorepository and biospecimen science: A new focus for CEBP. Cancer Epidemiology, Biomarkers & Prevention, 15, 1572-1573. doi:10.1158/1055-9965.EPI-06-0632

39.

Vaught

J. B.

Lockhart

Thiel

K. S.

Schneider

J. A.

(2007). Ethical, legal, and policy issues: dominating the biospecimen discussion. Cancer Epidemiology, Biomarkers & Prevention, 16, 2521-2523.

40.

Wendler

Kington

Madans

Wye

G. V.

Christ-Schmidt

Pratt

L. A.

. . . Emanuel

(2005). Are racial and ethnic minorities less willing to participate in health research? PLoS Medicine, 3(2), e19. doi:10.1371/journal.pmed.0030019

41.

Yassin

Lockhart

del Riego

M. G.

Pitt

Thomas

J. W.

Weiss

Compton

(2010). Custodianship as an ethical framework for biospecimen-based research. Cancer Epidemiology, Biomarkers & Prevention, 19, 1012-1015.