Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland

Introduction

Biobanks are legally regulated entities that acquire, store, prepare, preserve, test, analyze, and distribute defined biological material and related information and data from human sources [1]. While biobanks may differ on the type of biological specimens they store, test, and analyze, (DNA, RNA, proteins, cells, tissues, organs, body fluids, plant, animal, or human biospecimens) [2], they are often classified either as population or disease-oriented biobanks. While the former are focused on collecting biosamples from healthy volunteers and aim at studying specific factors in a given population and monitoring public health; the latter, collect disease-specific biospecimens from various individuals, i.e. oncological or cardiovascular patients, persons with rare or other genetic disease, usually in hospitals [1,3].

Unsurprisingly, during past few decades research biobanks have become a central element in contemporary biomedical research [4,5] and public health [6]. Simultaneously, while they are now a central path for personalized medicine the public image of biobanking is mainly positive as they are often framed through the prism of (expected) scientific and medical benefits [7]. However apart from being scientific enterprises biobanks have also important social, ethical, legal, and political dimension [8–11]. Consequently, all biobankers should be aware that the public image of biobanks can influence people’s willingness to participate in biobank research [12].

While most literature on the ethical, legal, and social implications (ELSI) of biobanking focus on such issues as biobank awareness, informed consent, data sharing, commercialization or biobanks financial sustainability [8–11], it seems that one of the biggest challenges that continues to emerge as an imperative for every biobank is ensuring public trust [13]. In fact, a growing body of research stress the fundamental role of trust in the success of biobank research, as it ensures the long-term cooperation and relationship with research participants and the donors [14–18]. On the other hand, lack or loss of trust in biobanking institutions, scientific research or scientists can hinder people’s willingness to donate their biological material for scientific purposes [19–26].

Although trust has always been important for the biobank organization, it has become even more significant when gradually, small repositories created at medical universities, research institutions, hospitals, biotechnology or pharmaceutical companies, often for one particular project, transformed into state-supported large scale general population biobanks and national or international biobanking networks [27,28]. Moreover, building and cultivation of public trust in research biobanks is of particular importance in late-modern societies often characterized by the declining social trust in scientific knowledge and expertise [29,30]. Indeed, although since the 1990s most Europeans express optimism about science and biotechnology, especially when they expect medical applications and benefits for human health [26,27], over the past few years research reveal declining social trust and confidence in scientific information about biotechnology [19,21,22,26]. Consequently, there is a growing public skepticism or resistance towards such biotechnologies as gene editing though CRISPR-Cas9 technology [31,32], (COVID-19) vaccines [33–35] or research biobanks [36–38]. Meanwhile, numerous studies have stressed the fundamental role of trust for recruitment and cooperation with research participants and the donors, including cancer patients [38–54].

This is of particular importance in countries like Poland where biobanking is still in the early development. In fact, although previous studies conducted in Poland demonstrated that there is high level of support for biobanking among the public, and many people declare the will to share their biospecimens for biobank research, it was also shown that biobanks rise some ethical and legal concerns [55–59]. One of the reasons for this is that although since 2016 the Polish Biobanking Network, gathering more than 50 biobanks, was established and operates within the European Biobanking and BioMolecular resources Research Infrastructure (BBMRI)-European Research Infrastructure Consortium (ERIC) [60,61], and the Quality Standards for Polish Biobanks (QSPB) which follow the Taipei Declaration, the Organisation for Economic Cooperation and Development (OECD) recommendations, the guidelines created by the International Society for Biological and Environmental Repositories (ISBER) and the International Organization for Standardization (ISO) established the general requirements for biobanking (9001: 2015, ISO 20387: 2018) [62,63], still in Poland there are no specific legal regulations regarding biobanking and rules for using human biological material and clinical data for scientific purposes [64].

Since the success of biobank research requires constant cooperation with the donors, including patients, who share their biospecimens for research purposes, building social trust toward biobanking institutions and knowing the factors influencing patients’ willingness to donate for biomedical research is of crucial importance [14–26]. However, while most previous studies conducted in Poland have assessed the awareness of biobank research and the willingness and motivations to donate biospecimens for research purposes among the general population [55,56,59] or medical students [57,58], much less is known about the perspective of cancer patients. Therefore, this questionnaire-based study aimed to evaluate trust, support and willingness to donate personal data and tissue samples for biobanking from patients attending oncology departments in Poznań, Poland. Although the study used data from a larger project on oncology patients’ attitudes and willingness to donate human biological material for biobank research, the data presented here focuses on patients’ perception of various types of biomedical research conducted by biobanks and different types of biobank institutions.

Material and Methods

ETHICS STATEMENT:

This study was conducted in line with the principles of the Declaration of Helsinki (revised in 2000) [65]. Ethics and research governance approval were obtained from the Poznań University of Medical Sciences Bioethics Committee (KB – 1035/22, granted on 14th December 2022). All respondents provided written informed consent before completing the survey. The consent was obtained during patient treatment visits by a member of the research team (JC) who is a trained ethicist specializing in medical ethics and bioethics.

STUDY DESIGN:

As part of a broader project assessing oncology patients’ attitudes toward donating human biological material for biobank research, this study specifically delves into patients’ views on donation for different types of research and various types of biobanks institutions. The data stems from an anonymous, self-administered pen-and-paper survey focused on gauging Polish cancer patients’ attitudes towards biobank research.

INCLUSION AND EXCLUSION CRITERIA:

The study targeted oncology patients for recruitment, applying the following inclusion criteria: 1) at least 18 years old, 2) a confirmed cancer diagnosis, 3) expressing willingness to participate, and 4) providing written informed consent before survey completion. The exclusion criteria were: 1) younger than 18 years old, 2) with suspected cancer but without confirmed diagnosis.

PARTICIPANTS AND SETTING:

While there are currently 26 full-profile oncology centers in Poland offering multidisciplinary treatment in oncological surgery, radiotherapy, and clinical oncology, recruitment for the present study occurred in 2 oncology units in Poznań, Poland: the University Clinical Hospital in Poznań and the Outpatient Clinic and the Division of Gynecological Oncology at the Gynecological and Obstetrics Clinical Hospital of the Poznań University of Medical Sciences.

RESEARCH TOOL:

The questionnaire employed in this survey was developed following a thorough review of the published literature on oncology patients’ attitudes toward biobanking human biological material for research purposes [38–54]. The construction adhered to the guidelines of the European Statistical System [66]. A preliminary questionnaire draft underwent consultation with a panel of experts, including an oncologist, a medical sociologist, a bioethicist, and a public health specialist, leading to the refinement of 3 questions. Subsequently, a pilot study involving 20 oncology patients prompted the rephrasing of 2 additional questions. The revised questionnaire was then reviewed and approved by the same panel of experts and obtained approval from the Bioethics Committee of Poznań University of Medical Sciences.

The final questionnaire comprised 22 questions categorized into 4 sections. The first section gathered demographic and disease-related data. The second section explored cancer patients’ awareness of biobanks (if they had heard about biobanks before, their impressions related to the word ‘biobank,’ and their opinion on the establishment of cancer biobank in Poland). The third section assessed patients’ willingness to contribute to biobank research (whether they would donate their cancer tissues left over after a medical procedure or other samples to a biobank for research purposes, what would you expect in exchange, and their opinion on the risks associated with biobank research). The concluding section focused on patients’ views on various types of biobank research and related institutions (types of research and biobank institutions they would be willing to donate to, and their opinions on the accessibility of their donated samples to other research) (Supplementary Material).

Given earlier research highlighting the lack of biobank awareness among the Polish public [55–59], all participants were provided with a concise, plain-language definition of research biobanks (“A biobank is a place where both hospital patients suffering from specific diseases and healthy people living in a given area can donate samples of biological material (eg, body fluid or tissue) for research purposes to better understand health and diseases. These samples are also accompanied by other information and/or measurements (eg, disease history, family history, lifestyle, height, body weight and composition, biochemical or hematological blood parameters), which is intended to allow for the best possible characterization of a given sample and understanding how lifestyle, environment, and genes influence health.”). Furthermore, each item featured close-ended questions with a limited set of predefined and straightforward answer options, including a neutral response (“I do not know”).

DATA COLLECTION:

The research was conducted from February to June 2023, targeting oncology patients from 2 Poznań hospitals equipped with oncology treatment units: the Institute of Oncology at the University Clinical Hospital in Poznań and the Outpatient Clinic with the Division of Gynecological Oncology at the Gynecological and Obstetrics Clinical Hospital of Poznań University of Medical Sciences. The survey employed convenience sampling, and participants did not receive any monetary or non-monetary compensation for questionnaire completion.

Before engaging in the survey, all patients received information from a member of the research team (JC) regarding the study’s purpose. They were briefed on the voluntary, anonymous, confidential, and non-compensatory nature of their participation. Patients were also informed of their right to withdraw from the survey at any point without consequences. Upon obtaining informed consent from willing participants, respondents completed the questionnaire using pen and paper with the assistance of the same member of a research team (JC) who distributed the questionnaires and explained in person the purpose of the study and methods used, and instructed every patient on how to complete the questionnaire. Additionally, patients had a chance to ask questions during the data collection process. The questionnaire required approximately 10–20 minutes for completion.

Hardcopy data were collected and transcribed into an electronic database by a member of a research team (JC), and then were cross-checked for accuracy by 2 other members of the research team (DW and JD).

Out of the total 621 cancer patients approached and invited to participate in the survey during the data collection period, 595 consented to take part by completing the questionnaires, yielding a response rate of 95.8%. However, 55 questionnaires (8.8%) were excluded from the analysis due to incomplete or invalid responses. Thus, the final analysis comprised 548 questionnaires.

STATISTICAL ANALYSIS:

Descriptive statistics were utilized to provide a concise summary of participant responses. Counts and percentages were employed to illustrate the distribution of responses, as presented in Tables 1–5. Statistical analysis was carried out using JASP 0.18.3 and PQStat 1.8.6., with significance levels set at 0.05. No imputation was applied for missing data. In Table 6, a stepwise logistic regression analysis was conducted to identify factors associated with cancer patients’ trust in biobanking. The dependent variable focused on the likelihood to donate, and independent variables included demographic factors, attitudes toward donation, and all other pertinent variables from Table 1. The stepwise selection method was employed to iteratively incorporate variables that significantly contributed to the model. A regression model was developed by integrating several indicators showing statistical significance (P values <0.05), while variables with P values >0.1 in univariate logistic regression models were omitted from the multivariable logistic regression models. This approach aligns with research by Hosmer and Lemeshow on a goodness-of-fit test for the model, where a P value >0.05 was considered indicative of a good fit.

To address fragmented answers or instances with small respondent groups, responses were consolidated to achieve statistical significance. Considering the importance of religion, respondents were categorized into 2 groups: those for whom religion is important and those for whom it is not. Similarly, regarding education, participants were divided into 2 groups based on whether they had attained higher education or not. Places of residence were categorized into those residing in areas with more than 100 000 inhabitants and those with fewer than 100 000 inhabitants. Age groups were established using the median, resulting in 2 categories for those above and below the median.

Results

PARTICIPANTS’ CHARACTERISTICS:

Table 1 outlines the demographic and health-related characteristics of the study participants. The 548 patients were predominantly female (85.2% females vs 14.8% males). The age distribution encompassed a range of categories, with most 40–49 and 50–59 years old (25.2% and 23.5%, respectively). Educational backgrounds varied, with a larger proportion having more than a high school education (53.8%). Geographical distribution reflected a mix of urban and rural settings, with participants residing in areas ranging from less than 10 000 inhabitants to over 500 000 inhabitants (27.2% and 26.6%, respectively). While 53% of respondents declared themselves as religious, 47% did not. Cancer-related information included the stage of cancer, where stages 3 and 2 were the most prevalent (26.4% and 26.3%, respectively); 53.8% of patients reported experiencing another chronic disease, and 65.5% had a family history of cancer. Additionally, 19.5% of patients were aware of having a family history of genetic disease, 20.6% were blood donors, and 19.3% were bone marrow donors.

AWARENESS OF RESEARCH BIOBANKS:

The data revealed that 43.4% of the cancer patients have heard about biobanks, while 56.6% have not (Table 2). More than a half of patients had positive impressions about biobanks (53.1%) and very few felt negatively toward them (1.1%). However, 17.5% expressed mixed feelings, and 28.3% were unfamiliar with the word biobank. The vast majority of patients expressed their support for establishing a cancer research biobank in Poland (92.2%), with only a few who opposed it (1.4%) or were uncertain (6.4%).

WILLINGNESS TO DONATE TO BIOBANK RESEARCH:

While 93.1% of cancer patients declared willingness to donate their cancer tissues left over after medical procedures to a biobank for research purposes (Table 3), 83.4% also declared willingness to donate other samples. When asked about their expectations in return for donating cancer tissues to a biobank, most patients expressed a desire for personal health information, including the detection of diseases or genetic predispositions (52.6%). Additionally, some wanted to receive research results (11.3%), preferential terms for medical examinations (7.3%), acknowledgments (4.4%), or medical examination free of charge (2.9%). Most importantly, only 3 respondents mentioned financial gratification (0.5%). Moreover, 20.8% declared that they would not expect anything. The table also provides responses categorized by gender, age, educational level, and cancer stage.

VIEWS ON BIOBANK RESEARCH:

Table 4 provides information on cancer patients’ perspectives on donating tissues for biobank research, capturing both respondents’ views on various types of research areas and risks associated with biobank research. Most participants expressed a positive inclination, with the highest endorsement seen for research on the pathogenesis of cancer (96.2%), incurable genetic diseases (94%) and autoimmune diseases (92.5%), dementia (92.5%), and curable somatic disease (91.4%). However, respondents were less likely to support commercial research (34.9%) or research on sexual identity (66.6%), intelligence (71%), and aggression (75.6%).

Participants were also asked about their concerns related to potential risks associated with donating samples for cancer-related biobank research. Key concerns included risks related to commercial (51.1%) or unethical (47.1%) use of samples, accessibility of data to insurance companies (50.9%) or the government (49.1%), or employees (46.4%), and security and confidentiality of the data (41.8%). Additionally, 20.3% of patients were concerned about the risk of stigmatization and discrimination (20.3%). Very few patients indicated distrust of science, scientists, and research institutions (7.3%).

PERCEPTION OF VARIOUS TYPES BIOBANK INSTITUTIONS:

Table 5 explores cancer patients’ perspectives on various biobank institutions. While most patients declared willingness to donate to biobanks managed by medical universities (95.3%), they supported public clinical hospitals more than private hospitals (68.8% vs 35.6%, respectively). Similarly, national biobanks were favored over foreign biobanks (79.2% vs 42.9%), public biobanks over private biobanks (64.2% vs 29.7), and Polish pharmaceutical companies over foreign ones (32.9% vs 22.6%).

Participants were also asked about their willingness to donate based on the accessibility of the biobank to different entities. Notably, most patients were willing to donate if thier samples were accessible only to researchers from the institution they were donated to (89.7%), but fewer patients were willing if access could be granted to researchers from domestic and foreign scientific companies (74.4% and 55.9%, respectively), or domestic and foreign commercial companies (26.5% and 21.3%, respectively). Unsurprisingly, respondents were very unlikely to donate if government institutions (10%), police (11.7%), or national (11.7%) or foreign (8.9%) insurance companies would have access to their biosamples.

Patients’ limited support towards of biobanks is further exemplified by the information they would like to receive before donating cancer tissues for research purposes. Most respondents expressed a strong desire for information on the type and purpose of the research (95.5%), who is conducting the research (90.3%), who would have access to samples and research results (89.6%), and who owns the biobank (83.4%).

FINDINGS FROM STEPWISE LOGISTIC REGRESSION ANALYSIS CONCERNING FACTORS IMPACTING WILLINGNESS TO PARTICIPATE IN BIOBANKING:

Table 6 displays the outcomes of a stepwise logistic regression analysis aimed at discerning the factors that impact willingness to donate for biobank research among cancer patients. The analysis encompassed various parameters, including the type of institution (eg, public clinical hospital, private hospital, national biobank), demographics (eg, age, domicile), education level, and religious affiliation.

The findings indicate that younger age and domicile significantly shape attitudes towards biobanks associated with a public clinical hospital. The willingness to donate to biobanks managed by private hospitals is notably influenced by younger age, religious affiliation, and lower education level. Moreover, higher education emerges as a significant factor influencing attitudes towards the national biobank, underscoring the role of education in shaping attitudes. Willingness to donate to a foreign biobank is positively associated with both younger age and higher education, while older age exerts a negative impact. Younger age exhibits a noteworthy influence on attitudes towards a private biobank, revealing age-related variations in attitudes. Additionally, higher education and younger age positively affect the willingness to participate in a public biobank, emphasizing the interplay of demographic and educational factors. Attitudes towards a foreign pharmaceutical company involved in biobanking is associated with younger age. Similarly, support for researchers from the institution where the donation was made and researchers from foreign scientific institutions is positively influenced by younger age, religious affiliation, and higher education. Notably, being a bone marrow donor is linked to a negative influence on the willingness to sample withdrawal.

Discussion

While this study shows that the vast majority of cancer patients supported the idea of the establishment of cancer research biobank in Poland (92.2%), and 93.1% declared the willingness to share their cancer tissues for research purposes, such attitudes were strongly associated with their perception of the risks related to donation for biobank research, type of biomedical research conducted by biobanks, and type of biobank institutions. While most respondents declared they were willing to share their biospecimens for various somatic diseases (including cancer, genetic and autoimmune diseases or dementia), they were hesitant when it came to research on various behavioral traits (eg, sexual identity, intelligence, aggression) and commercial research. Moreover, while most patients were willing to donate to biobanks managed by medical universities, public institutions, clinical hospitals, and national biobanks fewer declared the will to donate to foreign and private biobanks.

While there are many factors behind people’s willingness to participate in biobank research, our results suggest that social trust plays a crucial role in fostering successful cooperation with the donors, which may in turn stimulate further development of biobank research in Poland [14–26]. Although most patients expressed strong support for research biobanks, this study shows that patients’ support was not unconditional. In fact, while patients’ willingness to participate in biobank research was associated with their perception of risks related to biobanking, it seems that it was also influenced by their trust towards various types of research conducted by biobanks and different types of biobank institutions and researchers having access to their biosamples. This is important, as it may affect patients’ readiness to participate in biobank research and preferences for the type of consent, type of biobank, or type of research they wish to donate to.

Firstly, this study shows that patients’ support for biobanking was guided by their perception of various biomedical research conducted by biobanks. While most patients declared willingness to donate their biospecimens for research on somatic diseases, including cancer, genetic, and autoimmune diseases, or dementia, they were less eager to participate in research on sexual identity and behavioral traits such as intelligence and aggression, and were also less interested in participation in commercial research. This confirms observations made by others that while both the general public and cancer patients support donation for research on various disease, including cancer, diabetes, Alzheimer disease, and genetic diseases, they were less willing to participate in controversial or ethically questionable research involving human embryos, human cloning, or combination of human samples with animals [53,67–71]. Additionally, many people are reluctant to donate their biospecimens to commercial research or to research on stigmatizing features such as mental illness, homosexuality, or intelligence [72–74].

Secondly, since many cancer patients express concerns about privacy, confidentiality, and safety of the data [44,51,53,54], their attitudes towards donation were also associated with their perception of various types of biobanking institutions. Thus, biobanks managed by medical universities and public institutions, including clinical hospitals and national biobanks, were trusted more than foreign and private biobanks. This aligns with previous findings showing that since research conducted abroad is perceived as more controversial, many people prefer to donate to national rather that international research, and national biobanks are trusted more that foreign biobanks [69,75,76]. Similarly, scientific institutions and university hospitals are trusted more than governmental, for-profit, or insurance institutions [77,78]. For example, Kaufman et al demonstrated that most of the American public trusted academic and medical researchers more than governmental and pharmaceutical company researchers (92%, 80%, and 75%, respectively) [79]. Similarly, while 45% of Canadians declared trust of academic researchers, very few trusted researchers from the private sector (19%) and private biobanks (6%) [80].

These results were confirmed among cancer patients. For instance, Pentz et al reported that American cancer patients were more willing to donate for research conducted locally (95%) rather than outside the United States (85–92%) or in Europe (76–84%) [67]. In another study, patients were less likely to donate if their data would be stored within a government database (47%) [53]. Most Canadian patients declared they trusted physicians (71.3%), hospitals (63.4%), university researchers funded by government (40.4%), and disease-focused foundations (31.2%), but did not trust for-profit entities (61.7%) and the insurance industry (56.7%) [42]. Finally, French patients were more willing to agree for their samples to be given to another public laboratory rather than to a private laboratory (82.4% vs 69.2%, respectively) [40].

Thus, this study confirms that patients’ altruistic attitudes, exemplified by their support for biobank research and willingness to share their tissues left over after medical procedures for research purposes, are mediated by their perception of various types of biomedical research and biobanking institutions, which may together stimulate people’s trust in biomedical research and biobank participation [14–26].

Although most biobanks in Poland are organized and managed by medical universities, hospitals, or state institutions [81], which are highly trusted, it is important to increase public trust in the public health system. This is especially important given the declining trust in and criticism of science, scientists, and regulatory systems governing biotechnology, and this lack of trust is associated with low levels of science literacy, lack of awareness about biobanks, and ethical and legal challenges related to biotechnological innovations [8–11]. Numerous studies showed that some people are less willing to trust science and scientists for historical, cultural, social, and political reasons. For example, since some ethnic minorities have been subjected to many involuntary procedures or unethical medical experiments sponsored by the government, (eg, compulsory sterilization forced by the eugenics movement or the infamous Tuskegee Syphilis Study [82–84]), these groups of people may have less trust in science, scientists, healthcare professionals, the government, medical institutions, and the pharmaceutical industry. For example, due to their negative experiences with colonization, eugenics, and medical experiments, members of various ethnic minorities, including Native Americans, Native Alaskans, Hawaii Natives, African-Americans, and Mexican-Americans tend to distrust scientists and biobank institutions [36–38]. Similarly, in many post-communist countries, which are often described as “low-trust societies” [85], people have a strong sense of mistrust towards the state and tend to act in opposition to social institutions [86,87]. Moreover, research shows that lack of trust or distrust towards the state, scientists, and healthcare institutions was further undermined by mass involuntary vaccinations [88,89] and coercive psychiatric abuse for political purposes [90,91]. Consequently, civil society is weak in those countries and people do not engage actively in social organizations and elections, and their trust in science is also relatively low. This is important, since it was reported that people’s willingness to donate for biobank research was mainly shaped by social trust in physicians and scientists [55,56]. However, even though medical biotechnologies are often seen more favorably than advances in other fields of science, recent studies showed that Polish social acceptance for innovations such as vaccinations is one of the lowest in Europe [34,35].

Finally, although most Poles perceive the private healthcare system as better organized and offering faster and more comprehensive access to health [92,93], many individuals associate public institutions, including banks, hospitals, or pharmaceutical companies, with public goods organized and aimed primarily for public benefit. In contrast, their private counterparts are often synonymous with business, profit, or even exploitation. However, this sentiment is not surprising, as, despite the acknowledgment of the advantages of the privatization process and private companies’ operations in the free market, many Poles still view privatization negatively. This perception is rooted in the traumatic experiences of economic transformation in Poland, leading to the belief that key companies should remain in the hands of the state and not be privatized [94].

Although this is one of the few studies assessing cancer patients’ attitudes and willingness to donate personal data and tissue samples for biobanking, the limitations of this study are as follows. First, it surveyed respondents in 2 hospitals in a single Polish city. Thus, further research should include a wider net of healthcare facilities and an extended geographic area to increase generalizability of the study. Additionally, data for other countries from the region would yield interesting comparative data. Second, there is implicit gender bias since most questionnaires were completed by female patients. However, it must be acknowledged that this overrepresentation results from the fact that during the entire period of data collection most patients admitted to both oncology departments were women. Third, although the questionnaire used in this survey was consulted with a panel of experts in the field of oncology, medical sociology, bioethics, and public health, and it was pretested with 20 oncology patients, it is still and ad hoc tool and has not been validated. Consequently, measurement error is possible, and caution should be exercised when interpreting the results. Fourth, since we did not ask any particular question regarding (lack of) trust towards biobanks, future studies should assess this variable. Fifth, although the patients were not asked about previous experiences with biobanks and whether they had ever donated their samples for research purposes before, there is a possibility that some respondents had such experiences that might have influenced their responses. However, since 56.6% of patients had not heard about biobanks, and because biobanks in Poland are relatively new, most respondents probably had not had such experiences. Finally, since study participants raised a wide range of concerns regarding biobanking, a more in-depth study using qualitative methods is required to better understand these issues.

Conclusions

Although patients’ support for cancer biobanks is high, it is not unconditional, as their willingness to participate in cancer-related research is associated with their perception of risks associated with biobanking, and with the types of biomedical research conducted by biobanks and different types of biobank institutions. Thus, to increase patients’ trust of biobanks, the following guidelines are suggested:

Supplementary Material

QUESTIONNAIRE:

Dear Madam! Dear Sir!

My name is Jan Domaradzki and I work at the Medical University of Poznań, where, together with my research team, I conduct research on the attitudes of oncology patients towards the donation of human biological material for research purposes.

We would like to invite you to share your opinion on this important topic. This survey should only take approximately 15–20 minutes of your time

We would like to assure you that the research is completely anonymous and confidential (please do not sign it). As all responses are anonymous, they cannot be traced back to the respondent. Moreover, while no personally identifiable information is captured your responses will be combined with those of many others and summarized in a report to further protect your anonymity. All information gathered will be used only for scientific purposes.

Please answer all questions in the questionnaire. Unless otherwise stated, please select only one answer. If you are not sure of the answer, please choose the one that seems most appropriate to you.

We would like to thank you in advance for your help, time and assistance in carrying out the study.

For any questions, or if you need assistance to complete this questionnaire, please contact:

Jan Domaradzki, dr. hab. n. hum.

Laboratory of Health Sociology and Social Pathology, Department of Social Sciences and Humanities

Poznań University of Medical Sciences

Rokietnicka 7, Poznań, Poland

tel./fax: 61 8452 770; e-mail: [email protected]

Your feedback is very important. We appreciate your time and help

Sincerely

Jan Domaradzki

INFORED CONSENT FORM: