“As Long as You Ask”: A Qualitative Study of Biobanking Consent—Oncology Patients’ and Health Care Professionals’ Attitudes, Motivations, and Experiences—the B‐PPAE Study

This article reports on the attitudes, motivations, and concerns of oncology patients and health care professionals regarding biobanking.

Abstract

Introduction.

Consent to biobanking remains controversial, with little empirical data to guide policy and practice. This study aimed to explore the attitudes, motivations, and concerns of both oncology patients and health care professionals (HCPs) regarding biobanking.

Materials and Methods.

Qualitative interviews were conducted with oncology patients and HCPs purposively selected from five Australian hospitals. Patients were invited to give biobanking consent as part of a clinical trial and/or for future research were eligible. HCPs were eligible if involved in consenting patients to biobanking or to donate specimens to clinical trials.

Results.

Twenty‐two patients participated, with head and neck (36%) and prostate (18%) the most common cancer diagnoses; all had consented to biobanking. Twenty‐two HCPs participated, from across eight cancer streams and five disciplines. Themes identified were (a) biobanking is a “no brainer”; (b) altruism or scientific enquiry; (c) trust in clinicians, science, and institutions; (d) no consent—just do it; (e) respecting patient choice (“opt‐out”); (f) respectful timing of the request; (g) need for emotional/family support; (h) context of the biobanking request matters; and (i) factors for biobanking success.

Discussion.

These findings reinforced previous findings regarding high public trust in, and support for, biobanking. An initial opt‐in consent approach with the option of later opt‐out was favored by patients to respect and recognize donor generosity, whereas HCPs preferred an upfront opt‐out model. Factors impacting biobanking success included the context of the request for use in a trial or specific research question, pre‐existing patient and HCP rapport, a local institution champion, and infrastructure.

Implications for Practice.

Patients and health care professionals (HCPs) who experienced cancer biobanking consent were overwhelmingly supportive of biobanking. The motivations and approaches to seeking consent were largely mirrored between the groups. The findings of this study support the opt‐in model of biobanking favored by patients; however, HCPs preferred an opt‐out model. Both groups recognize the importance of making the request for biobanking at an appropriate time, preferably with emotional or family support, and respecting the timing of the request and privacy of the patient. Biobanking success can be promoted by hospital departments with a research focus by identifying an institutional biobanking champion and ensuring local infrastructure is available.

Introduction

Biobanking underpins translational research via the ethical and systematic collection, processing, storage, and distribution of human biospecimens and associated clinical data [1]. Biospecimens can be given by volunteers or are byproducts of biological samples (blood, biopsy, organ, or tumor resections) collected in the course of diagnostic/prognostic pathology testing or surgical resection. They may be requested for unspecified future research (universal biobanking) or as part of a clinical trial or study.

Patients providing biospecimens face potential risks if genetically or clinically significant information is found [2], including psychological distress, insurance or employment discrimination, and family disruption [3], [4], [5], [6], [7], [8]. Legislation, such as the Human Tissue Act (1983) [9] in New South Wales (NSW), Australia, stipulates that informed consent be obtained before biospecimens are used for research purposes to minimize these risks and ensure patient autonomy.

Various models of consent have been proposed for secondary research use of biospecimens [10], [11], [12], [13], [14]. Many biobanks use a “notice” model, in which individuals are notified that their biospecimens may be used for secondary research purposes, often within the general consent form at the time of donation. In an “opt‐out” model, individuals are informed at notification that they can opt out of secondary use. In a “broad,” or blanket, model, individuals are asked for permission to use their biospecimens for all secondary research purposes. In a “study‐specific” model, individuals are asked for consent for biospecimen use for a future extended research study in which their samples would be used [15]. Opt‐out institutional biobank models have been established in the U.S.A., with high rates of patient support [16]. Despite international research indicating that seeking universal biobanking consent raises few concerns among patients [11], [13], in Australia, significant challenges have been encountered in obtaining support from clinical leaders, ethics, hospital and local health district governance committees, and government medical and prescribing data custodians, such as the Australian Department of Human Services.

Relatively little empirical data exist on patients’ retrospective views on consent or their motivation for consenting or declining [11], [13], with most research being hypothetical in nature [17]. A comparative analysis suggested that hypothetical and factual willingness to consent to biobanking does not consistently match [18]. More recently, small studies have investigated the experiences and views of patients with cancer who consented to, or declined, biobanking. In one study of 18 patients with colorectal cancer who had consented to biobanking [19], four themes were identified: consent is “no big deal” compared with the diagnosis of cancer, helping others, trusting the surgeon, and information related to donation of biospecimens. In another study [20], 19 patients treated for colorectal cancer or leukemia reported that contributing to biobanks was a rewarding and empowering experience, engendering feelings of hope associated with research, making the relationship with researchers and clinicians less asymmetrical, revalorizing otherwise wasted tissue, and acting in solidarity and reciprocity, making patients part of a community.

Previous studies have failed to explore patient views, include those of the health care professionals (HCPs) involved, or to include responses from multiple institutions. One qualitative investigation of clinicians implementing an institutional biobanking consent model in two Australian hospitals did not concurrently explore patient views or compare responses from multiple hospitals [21]. Another quantitative investigation of HCPs and their knowledge and opinions of biobanking was conducted in a single center, predominantly with nurses, where only one third had heard of biobanking [22].

The aim of this study was to elicit the experiences, views, motivations, and perspectives of Australian oncology patients who had been approached regarding biobanking, as well as those of HCPs experienced in obtaining biobanking consent. This included their attitudes toward, and preferences for, existing opt‐in consent models versus hypothetical opt‐out models, to inform the future development of biobanking consent models in Australia and internationally.

Materials and Methods

The B‐PPAE study used qualitative methods to evaluate the attitudes and experiences of patients with cancer after engaging in consent to biobank discussions. The study drew on phenomenology as a theoretical orientation and research methodology. Phenomenology is concerned with understanding human experience in terms of “individual consciousness” [23]. With its empirical focus on individual experience, this approach was considered most appropriate for exploring patients’ and HCPs’ perceptions of consent to biobanking.

Participants

Patients.

Eligibility for the study included age >18 years, a cancer diagnosis, and having been invited to give consent to biobanking within the previous 12–36 months. Patients were purposively selected to ensure a range of cancer types, genders, ages, and locations (rural vs. urban) were represented. Patients were recruited from three metropolitan and two regional hospitals in NSW, Australia. Participating HCPs from these sites identified eligible patients and at their next clinic visit invited them to participate in the study. Patients provided written informed consent and verbally agreed for their contact details to be shared with a member of the research team, who then contacted them to schedule a 30‐minute telephone interview.

Health Care Professionals.

Oncology HCPs actively involved in consent discussions with patients regarding the donation of biospecimens (including tissue, blood, and/or other fluids) for a biobank and/or for clinical trials were approached to participate. HCPs were purposively sampled to ensure a diverse representation of clinical roles and cancer specialties. Consenting HCPs provided written informed consent and underwent a 30‐minute interview.

Measures

All participants completed a questionnaire gathering information on their age, gender, marital status, number of children, education level, occupation, language spoken at home, cancer type, treatment received, and type of biobanking consent experience (universal vs. clinical trial). HCPs provided information on demographic details, profession/discipline, and research by tumor type.

Semistructured telephone interviews (with patients) or face‐to‐face interviews (with HCPs) were audio recorded and professionally transcribed. The interview schedule was based on preset aims following a framework approach [24]. Proposed questions were reviewed by researchers expert in oncology nursing, psycho‐oncology, medical oncology, oncology surgery, and biobanking translational research, with input from consumer representatives. The questions were related to recall, concerns, decision making, motivation, advice, return of results, and opt‐in and opt‐out models of consent (supplemental online Appendices A and B). Interviews were conducted by J.F. between February and May 2016.

This study was approved by the Sydney Local Health District Human Research Ethics Committee, Royal Prince Alfred Hospital Zone X15‐0054 and HREC/15/RPAH/82, and local human research ethics committees at study sites.

Statistical Analysis

Demographic data were managed in MS Excel. Transcripts of the interviews were subjected to thematic text analysis with an inductive, data‐driven approach [25], [26] using NVivo10 software (QSR International Pty Ltd., Melbourne, Australia). Three investigators (J.F., P.B., H.S.) read and reread three transcripts independently and met to discuss emerging themes. An initial coding tree was established, which was refined through further review and discussion with S.Y., with differences resolved by consensus. Mutually exclusive themes and subthemes were defined in the coding tree to capture relevant meanings expressed by one or more participants. Data were systematically coded by J.F., with a third of the transcripts coded by an independent researcher to ensure consistency and reliability of coding. The number of participants expressing each theme is recorded in Tables 3, 4, and 5.

Table 3. Motivation for biobanking—themes.

Abbreviations: CLL, chronic lymphocytic leukemia; CNC, clinical nurse consultant; GU, genitourinary; HCP, health care professional.

Table 4. Approaches to biobanking consent—themes.

Abbreviations: CLL, chronic lymphocytic leukemia; CNC, clinical nurse consultant; GU, genitourinary; HCP, health care professional.

Table 5. Factors for biobanking success—themes.

Abbreviations: CLL, chronic lymphocytic leukemia; CNC, clinical nurse consultant; HCP, health care professional.

Results

Patient Participants

Demographic and disease details of the participants are shown in Table 1. Of 27 patients approached, 22 participated (81%). Mean age was 66 years (range, 34–79), 8 (36%) were female, 7 (32%) had completed Year 10 or lower, and 17 (77%) were born in Australia. Participants reported diagnoses across seven tumor streams, with the largest groups being head and neck (36%) and prostate (18%) cancer. Almost all patients (95%) recalled being asked to donate biospecimens to a biobank (41%), a clinical trial (32%), or both (32%; Table 1). Although efforts were made to recruit patients that had consented as well as those who had declined, participating HCPs advised that the overwhelming majority of patients invited to donate samples consented and identifying decliners was challenging; hence, none were included in the study.

Table 1. Demographic details of the patients.

^aOther language(s) spoken at home: Greek (1, 5%); Portuguese and Hakka (1, 5%).

Health Care Professional Participants

Of 27 HCPs across five hospitals approached via a letter of invitation, 22 consented (81%). Interviews were conducted either face‐to‐face (3) or via telephone (19), lasting from 30–85 minutes each. The mean age of participating HCPs was 44.2 years (range, 24–71), 14 (64%) were female, all had tertiary degrees plus postgraduate qualifications, and 13 (59%) were based at metropolitan hospitals (Table 2). The average number of years working as an HCP was 21.4 (range, 1–47). Disciplines included biobanking professional (14%), nursing (18%), hematology (5%), medical oncology (42%), and surgery (23%). Tumor types treated were brain (7), gastrointestinal/colorectal (10), genitourinary/prostate (4), gynecological (3), hematological (1), head and neck (4), lung (3), melanoma (1), all solid cancers (1), and one organ type only, not defined (4; Table 2).

Table 2. Demographic details of the health professionals.

Tertiary undergraduate qualifications include B. Nursing (5), B.Sc. (7), and MBBS/B.Med. (14).

Postgraduate qualifications include graduate certificate (6), Masters (2), Ph.D. (4), and medical fellowship (10).

Colorectal.

Abbreviation: GI, gastrointestinal.

Themes

Nine themes emerged, largely mirrored by patients and HCPs: (a) biobanking is a “no brainer”; (b) altruism or scientific enquiry; (c) trust in clinicians, science, and institutions; (d) no consent—just do it; (e) respecting patient choice (opt‐out); (f) respectful timing of the request; (g) need for emotional/family support; (h) the context of the biobanking request matters; and (i) factors enabling successful biobanking initiatives included having an institutional champion and the availability of appropriate infrastructure. An extensive table of participant quotes by theme is provided in supplemental online Appendix C.

Motivations for Participation in Biobanking

The first three themes related to motivations for participating in biobanking are summarized in Table 3 (T3), with representative quotes.

Biobanking Is a “No Brainer”.

Many patients expressed the view that consent to biobanking for future unspecified research or as part of a clinical trial was a “no brainer,” as it would clearly benefit society (T3; quotes [Qt] 1, 2). Likewise, some HCPs described biobanking as a “no brainer” for them and their patients (T3: Qt 5, 6). Many patients emphasized the waste of biospecimens that would otherwise have no use if biobanking were not undertaken (T3: Qt 3–4). Similarly, HCPs noted the research value of excess clinical biospecimens that would otherwise be discarded (T3: Qt 5, 6, 7). Some patients expressed astonishment that anyone would choose not to participate in biobanking (Qt 4).

Altruism and Scientific Enquiry.

Many patients were motivated by altruism and referred to “the greater good” and “the right thing to do” (T3: Qt 8–10). Reciprocity was also identified by some, who wished to give something back in return for care and wanted to thank their specialist for the treatment they received (T3: Qt 10). HCPs saw the benefits of biobanking for scientific enquiry, particularly when embedded within routine health care, and that additional tissue biopsies could be extremely informative for research (T3: Qt 11–13).

Trust in, and Respect for, Clinicians, Science, and Institutions.

Some patients emphasized that they felt safe donating biospecimens because they trusted the HCPs and researchers who would use them (T3: Qt 14). They assumed these professionals were ethical and altruistic, would not misuse biospecimens, and would operate under the law. The international nature of biobanking and clinical trials gave confidence in the validity of the process (T3: Qt 15). Similarly, some HCPs reported that a patient's trust in their clinician contributed to the decision to donate, and some HCPs preferentially approached the patients they had a good rapport with, while acknowledging the discomfort, pain, and inconvenience for the patient undergoing the biopsy procedure (T3: Qt 21, 22). A biobank existing within a hospital further instilled patient trust (T3: Qt 23).

Some patients believed that laypeople lacked the knowledge and understanding to know when use of biospecimens was appropriate or not (T3: Qt18, 19). They trusted the researchers and HCPs who had the expertise to make those decisions on their behalf (T3: Qt 17, 19). Thus, once general consent had been given, they did not feel it was appropriate for patients to reconsent to use of their biospecimens for specific projects or to withdraw continued use of their biospecimens (T3: Qt 20).

Approaches to Obtaining Biobanking Consent

Four themes relating to approaches to obtaining biobanking consent were identified and are summarized in Table 4 (T4).

No Consent—Just Do It.

Some patients noted that consent processes could create barriers, slowing down scientific progress. The financial and administrative costs of instituting opt‐in consent were considered unnecessary and obstructive (T4: Qt 2). Since the benefit of biobanking was so clear to them, these participants did not think consent was necessary (T4: Qt 1–3). They felt that biobanking processes should be as easy as possible, allowing open and extensive access to biospecimens. HCPs observed an overwhelming patient willingness to agree to donate their samples (T4: Qt 4–6), regardless of tumor stream. Patients were reported to ask “where do I sign?” as soon as HCPs commenced discussions of biobanking (T4: Qt 4), preferring a brief and simple consent process (T4: Qt 11). Cases of patients declining to donate tissue and blood for research were extremely rare (T4: Qt 7, 8); reasons for declining included language and education barriers and distance to travel to donate blood samples (T4: Qt 8, 10). Although further exploration of the reasons for declining consent was considered, there was concern this may be perceived as pressuring the patient to agree to consent (T4: Qt 8, 9).

Respecting Patient Choice.

Despite the positive attitudes most patients held toward biobanking, they recognized that some people, for cultural, private, or religious reasons, might have different views. They felt it was respectful to offer people the opportunity to provide informed consent to biobanking (T4: Qt 12, 13) rather than a model in which biospecimens from all patients are biobanked unless they choose to opt out. Thus, they felt that a clear and understandable explanation of the rationale and outcomes of biobanking, accessible to a layperson, was required. As this conversation was seen as essential, they felt an opt‐in approach should be used, rather than an opt‐out approach (T4: Qt 13–15).

Some participants felt that people should be informed about biobanking before the biospecimen was taken so that they could make a prospective and active (rather than passive) choice to contribute. This would allow them the satisfaction of choosing to give to others, which would not be the case if donating was assumed practice. Some felt that an opt‐out process would fail to acknowledge the gift being made (T4: Qt 15). In an opt‐in model, a single patient consent was preferred, rather than obtaining consent for each new research project (T4: Qt 16).

HCPs expressed concerns that patients may not understand they could opt out of biobanking, despite the rarity of patients objecting (T4: Qt 17). Others across multiple disciplines supported an opt‐out model (T4: Qt 18, 19), recognizing it should be based on public support and opinion (T4: Qt 19).

Respectful Timing of the Request.

Patients commented that the biobanking request would be appropriate at preoperative discussions or even at subsequent visits to their HCP, helping to avoid decision making during the stressful and emotional time around diagnosis (T4: Qt 20, 21). HCPs noted that biobanking requests were hardest (a) at the time of a diagnostic procedure potentially coinciding with communication of the (possible) diagnosis, (b) for poor prognoses (e.g., lung and brain cancer, where opportunities to obtain consent down the track may not be available), and (c) seeking tissue biopsy samples at disease progression (T4: Qt 22, 23, 25). Respectful conversations conducted sensitively and in private were important.

Need for Emotional Support.

Finally, some patients and HCP participants noted that patients with cancer are often asked about biobanking at an emotional and vulnerable time. Thus, steps to minimize the burden and potential threat of this discussion are required. Patients and HCPs said it was important to have a family member present at the discussion to provide emotional support (T4: Qt 26, 27) as well as family support for the decision (T4: Qt 28–30). Consent should be obtained by an HCP who is known by the patient, in a matter‐of‐fact manner, and in a comfortable place as part of the routine workup to surgery or other treatment. A respectful approach acknowledging the generosity of the patient would facilitate this process. Similarly, patients thought that emphasizing the ability to withdraw at any time is more reassuring, reduces pressure, makes the decision less final, and would likely result in more people consenting.

Factors for Biobanking Success

Finally, two themes enabling successful biobanking were identified and are described in Table 5 (T5).

The Context of the Biobanking Request Matters.

Patients were prepared to contribute to research by consenting to donate tissue and blood, whether as part of a clinical trial or to a biobank for future studies (T5: Qt 1, 2), particularly if samples such as blood were collected at the same time as standard sampling. Others recalled giving consent for their tissue samples already stored in a biobank to be used for future research, including further testing for eligibility for clinical trials or screening for access to other anticancer drugs (T5: Qt 3).

In the context of clinical trials, the idea of randomization to treatment was more likely to dissuade patients from participating than the need to undergo an additional biopsy for research (T5: Qt 4). Approaching patients to donate an additional tissue biopsy was easier if it was for a specific research study, eligibility in a trial, or to guide change in treatment, rather than for broad exploratory research only (T5: Qt 5, 6), and when the HCP had developed a good rapport with the patient (T5: Qt 7, 8).

Institutional Champions and Infrastructure.

The willingness of a HCP to undertake biobanking consent with patients may depend on their work environment and its drivers. For example, a research‐driven academic department is a positive factor, whereas a private hospital driven by commercial imperatives may present barriers (T5: Qt 9). The presence of a local biobanking champion, promotion of routine collection of biospecimens for research as standard practice, and adequate supporting infrastructure (biobanking staff, training of clinical trainees) were all identified by HCPs as key contributors to successful biobanking (T5: Qt 10–12).

Discussion

This analysis of the attitudes and experiences of patients and HCPs toward consent to biobanking offers an in‐depth, nuanced exploration of their views. All participants had experienced biobanking consent, either as a patient or HCP, a key point of difference between our study and other studies exploring attitudes in a hypothetical setting [27]. Patient participants had donated samples to biobanks or as part of participation in a clinical trial—a distinction not made in the literature. Although a broad mirroring of themes between the patient and HCP groups was evident, some differences in preferred consent models were notable.

Our findings corroborate international research showing that consent to biobanking has a significant social (intersubjective, familial, communal, and societal) dimension and involves complex trust relationships, which strongly mediate donors’ perceptions of risk and sense of altruism [28], [29]. Many participants felt that biobanking was of such small personal risk and obvious public good that it was a simple decision to make. The request to allow storage of biomaterials for ethically and scientifically robust future research approved by a Human Research Ethics Committee (i.e., conditional donation) was felt to be reasonable and easy to agree to.

Furthermore, patients felt that not undertaking biobanking was a flagrant waste of resources that could yield useful information in future. They spoke of it being a “shocking waste” to discard samples that could instead be stored for research to benefit others (not just family members). In 2003, The Federal Government's comprehensive Australian Law Reform Commission/Australian Health Ethics Committee Essentially Yours Report [30] also acknowledged the costly realities of ad hoc consent to biobanking in Australia. Among the numerous submissions calling for change, the Association of Australian Medical Research Institutes (submission G007) acknowledged that discarding samples could be seen as wasteful and disrespectful to donors (including deceased donors), including if there was further insistence on gaining consent from relatives. Other researchers have highlighted the lost opportunities to advance cancer treatments as a result of the failure of current consent to biobanking in Australian public tertiary hospitals [31].

B‐PPAE patients were motivated by altruism to donate biospecimens for research, and some also expressed a sense of reciprocity by being able to “give something back” in return for the health care they received. This supports findings in the literature [2], [20], [27], [32]. People's general willingness to donate to biobanks has been attributed to various social theories, such as Rose and Novas’ “biological citizenship” [33], Putnam's “norm of generalized reciprocity” [34], and conceptions of gift [35], [36].

Most participants felt that researchers and HCPs could be trusted with guardianship of biospecimens, given their expertise and that they worked within strong ethical and legal frameworks. Conversely, they felt that laypeople lacked the expertise to judge when use of biospecimens was appropriate or not and thus favored a general opt‐out model over reconsent for the specific use of biospecimens, as reconsent was likely to be confusing. A simple, one‐time consent is preferred by patients in multiple qualitative studies of biobanking across multiple diseases types [17], [27], [37]. Earlier Australian quantitative studies have also suggested that Australians are overwhelmingly willing to participate in biobanking for research and that this is strongly determined by trust in biobanks, researchers, and their respective institutions [38], [39], themes reflected in an international study of HCPs [40].

Interestingly, of our patient participants, 25% supported an approach of “no consent, just do it” to donating research biospecimens, whereas a similar number had a different view, preferring an “opt‐out” biobanking model. This latter group of patients recognized however that community trust and engagement in translational cancer biobank research may be easily eroded by the perception that biospecimens are taken by default, without patient consent or recognizing the generosity of this act. Although many patients would personally be willing to forgo consent to increase efficiency and reduce costs, they recognized that cultural, individual, and religious factors could influence others’ decisions. An active universal opt‐in process with the possibility of later withdrawal was therefore favored by many, versus study‐specific reconsent. Verbal advice that patients may (a) contact the tissue bank manager and/or consenting HCP at any time to discuss concerns or queries regarding the use of their stored samples and (b) withdraw their consent to use their sample for future research at any time was felt to be reassuring, although unlikely to ever be taken up in practice. HCPs supported an opt‐out model of biobanking consent.

Some patients and HCPs noted that in the context of cancer biobanks, consent can occur at a highly emotional time and that sensitivity, good communication, and appropriate timing, together with emotional/family support, are required to ensure an optimal consent process. They felt that a request from a trusted source (such as a member of the surgical team or a designated tissue bank liaison officer), made in a reassuring manner in a comfortable, safe environment, introduced as part of routine practice in public teaching hospitals, would be most likely to succeed. The clinical team may ideally be placed to undertake this task yet may need training, a local champion, and infrastructure support [21]. Some sites have supported their clinicians in this task through investing in sustainable biobank infrastructure, including staffing and facilities, and addressing barriers to cultural growth via promotion, training, and awareness‐raising among staff, the visiting public, and patients [41].

HCPs recalled few, if any, instances in which patients declined to biobank. In such cases, HCPs chose not to explore the reasons why patients declined biobanking to avoid harm (perceived coercion or pressure) to the patient. Despite the challenges of recruiting the small population that decline biobanking, this issue warrants further attention, particularly with few published studies in this area [11], [42], [43].

Whereas there are published studies on patients’ attitudes to undergoing an additional biopsy for research, mostly in the breast cancer setting [44], [45], [46], less is known regarding the attitudes of HCPs. One study reported wide variation in medical oncologists’ comfort levels in approaching patients with metastatic breast cancer to undergo biopsies for research purposes [47]. HCPs espoused the scientific benefit gained in obtaining and interrogating additional research tumor biopsy material; however, they were sensitive to the discomfort, pain, and inconvenience to the patient undergoing the biopsy procedure. Our study is the first to report that HCPs find it easier to discuss additional biopsies for research with patients in which the biopsy is required to guide a change in treatment or is mandatory for a clinical trial or where they have a pre‐existing relationship with the patient. HCPs reported that the decision to donate research biospecimens is a secondary priority of patients considering interventions of a clinical trial or the concept of randomization to treatment.

Conclusion

There is overwhelming support for, and trust in, biobanking practice among patients with cancer. This is significant for promulgating donations to translational cancer biobanks. Discarding cancer samples disregards the wishes of many patients and the opinions of the wider community, inhibits potential advances in cancer research, is economically wasteful, and squanders unique bioresources. This study suggests that with appropriate respect and provision of information, most patients with cancer will actively support biobanking. These attitudes are mirrored by cancer HCPs, who overwhelming support biobanking, noting that factors enabling success include the context of the biobanking request, having local institutional champions, and adequate infrastructure support.

See http://www.TheOncologist.com for supplemental material available online.

Author Contributions

Conception/design: Sonia Yip, Adam Walczak, Phyllis Butow

Provision of study material or patients: Jonathan Clark

Collection and/or assembly of data: Jennifer Fleming

Data analysis and interpretation: Sonia Yip, Jennifer Fleming, Heather L. Shepherd, Phyllis Butow

Manuscript writing: Sonia Yip, Phyllis Butow

Final approval of manuscript: Sonia Yip, Jennifer Fleming, Heather L. Shepherd, Adam Walczak, Jonathan Clark and Phyllis Butow

Disclosures

The authors indicated no financial relationships.