Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education

Hathaway, Cassandra A.; Siegel, Erin M.; Chung, Christine H.; Pabbathi, Smitha; Vidrine, Jennifer Irvin; Vadaparampil, Susan T.; Tworoger, Shelley S.

doi:10.1371/journal.pone.0246686

Cited by 5 publications

(5 citation statements)

References 27 publications

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“…Additionally patients’ experience of serious illness may have influenced their desire to be helpful and do something beneficial to society. At the same time, as has been shown by previous studies [ 34 , 39 , 48 ], many cancer patients enrolled in this study perceived donation as an act of reciprocity and expected personal benefits, either in the form of increased knowledge about their health or by receiving medical treatment.…”

Section: Discussionsupporting

confidence: 68%

“…Most importantly, this research confirms that cancer patients’ willingness to participate in biobank research is mainly driven by altruism, i.e. the desire to advance science and to help others, especially cancer patients [ 28 , 34 , 38 , 39 , 41 , 45 , 46 , 48 ]. However, patients in other countries also perceived donation as a moral obligation [ 46 ] and stressed that, since their cancer tissues had already been taken, by sharing them they could help advance science and medical progress [ 34 , 39 , 40 , 43 ], advance cancer research [ 28 , 38 , 42 , 44 , 46 ], benefit society and help other people, including future cancer patients [ 36 , 39 – 41 , 45 , 46 ].…”

Section: Discussionsupporting

confidence: 63%

“…However, although the research on the people’s views on biobank research is growing rapidly, over the last decade only 25 research on cancer patients’ perspective have been conducted, according to the PubMed database [ 28 , 32 – 48 ]. Similarly, while there are only a few studies assessing the views of the Poles on the attitudes towards biobanking and donation of HBM they focus on the general population [ 49 – 54 ], but there remains a shortage of research on the perception of biobank research among Polish cancer patients.…”

Section: Introductionmentioning

confidence: 99%

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Attitudes of oncology patients’ towards biospecimen donation for biobank research

Domaradzki,

Czekajewska,

Walkowiak

2024

BMC Cancer

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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.

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Section: Discussionsupporting

confidence: 68%

Section: Discussionsupporting

confidence: 63%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Attitudes of oncology patients’ towards biospecimen donation for biobank research

Domaradzki,

Czekajewska,

Walkowiak

2024

BMC Cancer

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“…In a pan-European study, only 10% of respondents who had never heard of biobanks would not donate [ 18 ]. Over time, it is possible to specify more patients’ preferences and priorities in research based on biobanking and build more trust in communication with participants and society [ 65 ].…”

Section: Discussionmentioning

confidence: 99%

Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables

Pawlikowski

Wiechetek

Majchrowska

2022

IJERPH

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Over the past few decades, there has been a dynamic development of biobanks collecting human biological material and data. Advances in biomedical research based on biobanks, however, are highly dependent on the successful enrolment and participation of human subjects. Therefore, it is crucial to recognise those factors affecting the willingness of individuals to participate in biomedical research. There are very few studies pointing to the role of trust, preferred values and specific psychological factors. The aim of our study was the analysis of the most significant relationships between selected moral and psychological variables (i.e., preferred values, types of trust and personality) and willingness to donate biological material to biobanks. The research was carried out on a Polish representative national sample of 1100 people over 18 years of age. Statistical methods with regression models were used during the analyses. The willingness to donate samples to a biobank was associated with different types of trust and specific values. Based on regression analysis, the most important factors related to the willingness to donate material to biobanks seemed to be (1) trust towards scientists and doctors and (2) selected preferred values such as knowledge, self-development and tradition. Other values or personality traits did not seem to be as important in this context. The obtained results can be useful in building the social responsibility of biobankers and scientists, issuing more appropriate opinions by research ethics committees and planning better communication strategies between participants and biobanks.

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“…Research priorities have been investigated in international studies [7][8][9], using a variety of approaches and prioritisation methods. Formal methodologies have been developed to achieve this, but none appear to be clearly advantageous for priority setting in Aotearoa [10].…”

Section: Introductionmentioning

confidence: 99%

Patients’ and carers’ priorities for cancer research in Aotearoa/New Zealand

de Vries,

Stewart,

Ireton

et al. 2023

PLoS ONE

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Background Discrepancies have been reported between what is being researched, and what patients/families deem important to be investigated. Our aim was to understand research priorities for those who live with cancer in Aotearoa/New Zealand, with emphasis on Māori. Methods Adult outpatients with cancer and their whānau/family completed a survey (demographics, selecting keywords, free-text comments) at Christchurch hospital. Quantitative and qualitative data were evaluated using standard statistical and thematic analyses, respectively. Results We recruited 205 participants, including both tūroro/patients (n = 129) and their whānau/family/carer (n = 76). Partnership with Māori health workers enabled greater recruitment of Māori participants (19%), compared to the proportion of Māori in Canterbury (9%). Cancer research was seen as a priority by 96% of participants. Priorities were similar between Māori and non-Māori participants, with the keywords ‘Cancer screening’, ‘Quality of Life’ and ‘Development of new drugs’ chosen most often. Free-text analysis identified three themes; ‘Genetics and Prevention’, ‘Early Detection and Treatment’, and ‘Service Delivery’, with some differences by ethnicity. Conclusions Cancer research is a high priority for those living with cancer. In addition, participants want researchers to listen to their immediate and practical needs. These findings may inform future cancer research in Aotearoa. Māori terms and translation Aotearoa (New Zealand) he aha ō whakaaro (what are your thoughts) hui (gathering) mate pukupuku (cancer) mokopuna (descendent) Ōtautahi (Christchurch) rongoā (traditional healing) tāne (male) te reo (Māori language) Te Whatu Ora (weaving of wellness, Health New Zealand) tikanga (methods, customary practices) tūroro (patients) (alternative terms used: whānau affected by cancer or tangata whaiora (person seeking health)) wahine (female) Waitaha (Canterbury) whakapapa (genealogy) whānau ((extended) family, based on whakapapa, here also carer)

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Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education

Cited by 5 publications

References 27 publications

Attitudes of oncology patients’ towards biospecimen donation for biobank research

Attitudes of oncology patients’ towards biospecimen donation for biobank research

Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables

Patients’ and carers’ priorities for cancer research in Aotearoa/New Zealand

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