Biobank attributes associated with higher patient participation: a randomized study (original) (raw)
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Attitudes of oncology patients’ towards biospecimen donation for biobank research
BMC cancer, 2024
Background Since the biological material that remains after diagnostic and therapeutic procedures plays crucial role in biobank research, this study aims to explore cancer patients' views on the donation of biospecimens for research purposes. Methods 548 oncology patients from two hospitals with oncology treatment units in Poznan, Poland, completed an anonymous, self-administered pen-and-paper questionnaire. Results Although only 43.4% of patients had heard of biobanks, 93.1% declared themselves willing to donate. 71.1% of patients believed that doctors should ask patients to donate, and 60.9% that this should be done before the medical procedure. While 65% of patients were willing to donate any type of tissue that remained after a medical procedure, blood, saliva and hair were indicated most frequently. 40.5% of patients would donate their entire body after death and 21% would refuse. Patients' support for biobanks was mainly driven by the desire to support science, help advance cancer research and altruism. Some respondents expected health information or medical treatment. The most common barriers for donation were physical distance, repeated examinations, concerns over the privacy and confidentiality of data and the commercial or unethical use of samples. Patients' attitudes toward biobank donation seemed to be associated with age, education level, declared religiousness, a family history of genetically determined diseases and whether they were a blood donor. Conclusions Although cancer patients' lack of biobank awareness had no effect on their affirmative attitudes towards biobank research, there is a need to further increase patients' support and overcome possible barriers that might hinder their willingness to donate.
Consent for Biobanking: Assessing the Understanding and Views of Cancer Patients
JNCI: Journal of the National Cancer Institute, 2011
Cancer patients were questioned about the consent process in a context in which they were routinely requested to donate tumor samples to research. After in-depth interviews of 19 patients, a 12-page questionnaire was designed and mailed to 745 patients who had been recently treated for colorectal cancer, breast cancer, or a hematological malignancy at a French Regional Cancer Center at which an opt-in biobanking system has existed since 2002. The response rate was 77.0% (N = 574). Among responding patients, 349 (60.8%) of the 574 were in favor of a formal and signed consent. Concordance was low (kappa = 0.23) between the number of patients who declared in the survey that they had given consent (213 of 574 [37.1%]) vs the number for whom registered consent had been recorded (267 of 574 [46.5%]). Only 2 (0.3%) of the 574 patients stated that they had signed a refusal, and only 88 (41.3%) of the 213 patients who remembered giving consent understood that their consent for biobanking also covered authorization to use their clinical data. We conclude that the opt-in consent procedure is positively perceived by most patients but should be improved for a better understanding and possibly an even better adherence to the consent process.
European Journal of Human Genetics, 2015
Although rarely acknowledged, a successful biobank is highly dependent on the support of the health professionals who assist the biobank in all aspects of its activities. In many cases, the lack of health professional support can be a limiting factor in the biobanking process of collecting and processing high-quality biospecimens. The aim of this study was to determine the attitudes of health professionals towards cancer biobanking. Using a 5-point Likert scale questionnaire, important aspects of biobanking, including accrual, quality, knowledge, responsiveness, impact, access, trust, governance and accreditation, were investigated. In total, 95 of 124 health and medical practitioners who were approached participated in this study (77% response rate). Health professionals in general supported the aims of biobanking with 56% of participants showing willingness to create a biobank and recruit donors (accrual), 85% understanding the importance in the storage and distribution of biospecimens (quality), 88% having an appreciation for the role of a biobank in furthering cancer research (knowledge), 70% showing awareness of the use of biospecimens in future research initiatives (responsiveness) and 73% demonstrating support for a biobank with proper control, authority and credibility measures in place (governance and accreditation). Overall, provided that proper information about the activities of the biobank and researcher access was transparent, health professionals were very willing to support cancer biobanking. These findings may assist in developing strategies for the establishment and maintenance of biobanks and aid the implementation of more effective policies and procedures to embed biobanking into routine hospital practices.
BMC Medical Ethics, 2023
Background Over the last few decades biobanks have been recognised as institutions that may revolutionise biomedical research and the development of personalised medicine. Poland, however, still lacks clear regulations regarding the running of biobanks and the conducting of biomedical research. While the awareness of the general public regarding biobanks is low, healthcare professions and medical students also lack basic knowledge regarding biobanks, and such ignorance may affect their support for biobanks. Methods This study is aimed at assessing the knowledge and attitudes of future healthcare professionals towards the donation of human biological material for research purposes and is based on a sample of 865 Polish medical students at Poznań University of Medical Sciences. Results This research has shown that the awareness of medical students' regarding biobanks is low. It has also shown that while the majority of future healthcare professionals enrolled in this study supported the idea of biobank research and declared themselves willing to donate, still many students felt ambivalent about the biobanking of human biological material for research purposes and expressed concerns over biobanking research. While the primarily motivation to participate in biobank research was the desire to help advance science and to develop innovative therapies, the most common reason for a refusal was the fear that the government, insurance companies or employers, might have access to the samples. Concerns over unethical use of samples and data safety were also prevalent. More than half of students opted for a study-specific model of consent and only a few opted for broad consent. Conclusions This research suggests that a lack of knowledge about biobanks, their role and activities may affect medical students' support for biobanks and their active participation in the collection and management of biospecimens for research purposes. Since in the future medical, nursing and pharmacy students will be involved in the collection, storage, testing and analysis of biospecimens from their patients, medical students in all professional fields should be trained regarding the concept, purposes and operational procedures of biobanks, as well as the ethical, legal and social implications of biobank research.
Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns
Scandinavian Journal of Public Health, 2010
Aims: To ascertain the attitudes towards the use of existing diagnostic and research samples, the setting up of a national biobank, and different types of informed consent among Finns. Method: A population survey of 2,400 randomly selected Finns aged 24-65 was conducted at the beginning of 2007. Results: A total of 1,195 responses (50%) were received after one reminder. Of the respondents, 83% said that they had little or no knowledge of what biobanks were. Despite this, 77% regarded the setting up of a national biobank in a positive light. One third (34%) would not attach any conditions on their consent, while 42% said that it was important to regain consent when the new study contains diverging steps. One third (30%) wanted consent to be regained for every new research project, and 44% would like to decide what type of research their samples would be used for if they were included in a national biobank. One third of both men and women approved of the use of their samples in research involving private enterprises. Conclusions: In general, Finns were positive toward the setting up of a national biobank, as well as public-private partnerships, even though they considered their knowledge of biobanking to be limited. This, however, did not mean that they were indifferent to the use of their samples, but most wanted the ability to control how their samples are used.
Cancer patient perceptions about biobanking and preferred timing of consent
Biopreservation and biobanking, 2014
Little is known about how cancer patients feel about donating their tissue, especially in a multiethnic population. Structured interviews were conducted with 30 patients recently diagnosed with cancer, referred to the study by six cancer surgeons and oncologists and by other patients in the study. The participants reported a variety of cancers, and the sample reflected the racial distribution of Hawai`i, including Caucasians (23%), Native Hawaiians and Pacific Islanders (27%), Asians (37%), Hispanics (7%), Native Americans (3%), and African Americans (3%). The interview questions and analysis were guided by the Framework Approach, with interview questions based on pre-set aims. Findings suggest that most cancer patients would donate cancer tissue to science, especially if informed that doing so could help researchers find causes of and cures for cancer. Patients varied on when in their cancer journey they would be most receptive to being asked for a donation, however two-thirds thou...
Factors influencing public participation in biobanking
European Journal of Human Genetics, 2014
A diversity of public participation in biobanking is a highlight for the success of biobanks. It was previously reported that only two-thirds of Jordanians expressed interest in biobanking. To promote public involvement in a biobank, it is imperative to determine the aspects that influence the decision-making to participate. On the basis of a national survey involving 3196 respondents, the influence of 13 biobanking factors was assessed, including returning research results, privacy, freedom of choice, uncertainties about research, monetary and health considerations, and personal belief. Perception toward each factor was also correlated with willingness to participate in a biobank. A considerable number of respondents indicated returning research results as influential in their decision to become biobank donors. Interestingly, whereas the positive perception of availability of general results (39%) correlated with willingness to donate for biobanking, the negative view of unavailability of individualized results (47%) did not correlate with unwillingness. Religious permission of sample donation for research had the strongest positive influence (61%) and the highest correlation to participate among positively perceived factors. Unspecified research was highly indicated as a negative factor (45%), but did not correlate with unwillingness to become a biobank donor, whereas allowed withdrawal had a positive effect (31%) and correlation to contribute to biobanking. The negative perception of accessing medical information (9.5%) and re-contact (8.5%) had the strongest correlation with unwillingness to donate to a biobank. These results may provide an insight into how to formulate strategies to promote public participation in biomedical research and biobanking.
Cancer patient perceptions on the ethical and legal issues related to biobanking
BMC Medical Genomics, 2013
Background: Understanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy. Methods: We examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1% response rate) followed by a follow-up survey (62.5% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust. Results: The majority (59.6%) preferred one-time consent, 30.3% desired a tiered consent approach that provides multiple options, and 10.1% preferred re-consent for future research. When asked different questions on re-consent, most (58%) reported that re-consent was a waste of time and money, but 51.7% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2%) stated that the research institution owns the samples whereas 19.4% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies. Conclusions: Many cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.
Sample and data sharing barriers in biobanking: consent, committees, and compromises
Annals of Diagnostic Pathology, 2014
The ability to exchange samples and data is crucial for the rapidly growth of biobanking. However, sharing is based on the assumption that the donor has given consent to a given use of her or his sample. Biobanking stakeholders, therefore, must choose 1 of 3 options: obtain general consent enabling multiple future uses before taking a sample from the donor, try to obtain consent again before sharing a previously obtained sample, or look for a legally endorsed way to share a sample without the donor's consent. In this study, we present the results of 36 semistructured qualitative interviews with Swiss biobanking stakeholders regarding these options and the role of ethics committees in the process of authorizing sharing. Our results show that despite a lack of legal or guideline-based barriers to general consent, some stakeholders and ethics committees have reservations about this method of consent. In most cases, however, a general consent form is already in use. Many interviewees describe processes involving the ethics committees as time-consuming and cumbersome and their requirements as too demanding for donors/patients. Greater awareness of donors' opinions and preferences and the content of guidelines and recommendations could therefore be helpful for a better justified perspective of biobanking stakeholders and ethical committee members, equally. Finally, it may be necessary to differentiate between procedures governing future samples, where general consent is clearly desirable, and the use of old yet still relevant samples, where the option of using them without consent can be highly beneficial for research.
Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues
2021
Objectives Collection and storage of biospecimens and data for biobanking raise many ethical concerns. Stakeholders’ opinions about these ethical issues are important since they can help in the development of ethical guidelines to govern biobanking activities. Physicians are among the important stakeholders since they contact potential participants and could be biobank users. The goal of this study is to evaluate the perceptions and attitude of Egyptian physicians towards ethical issues in biobanking. Methods A cross-sectional online survey was designed and distributed with the target group between November 2019 and January 2020. Results The questionnaire was completed by 223 physicians. While 65.5% reported hearing the term "Biobanking" before, 45.7% knew that there are biobanks in Egypt. Participants had a general positive attitude towards the value of biobanks in research. About 73% agreed that biobanks can share biospecimens with international research organizations, b...