Comparison of factors influencing the willingness to donate biospecimens among guardians of children with cancer and adult cancer patients

Abstract

Background: This study examined and compared the attitudes and willingness of guardians of children with cancer and adult cancer patients toward donating biospecimens and clinical data for cancer research. Methods: We conducted a cross-sectional study among guardians of children with cancer (Guardian group) from Shanghai Children's Medical Center and adult cancer patients (Adult group) from Shanghai Ninth People's Hospital between February 1, 2019, and January 31, 2020. Participants' demographic data, willingness, and motivations for biospecimen donation were collected and analyzed. Results: Of 670 participants, 90.8% (318/350) in the Guardian group and 88.1%(282/320) in the Adult group completed the questionnaire. Most participants were willing to donate residual tissue samples (92.8% in the Guardian group vs. 79.4% in the Adult group, p ψ = 0.032) and clinical data (94.0% vs. 72.3%, p ψ < 0.001) for medical research. Logistic regression analysis indicated that only child status (odds ratio [OR] = 0.140, p = 0.02), history of blood donation (OR = 4.467, p = 0.019) in the Guardian group, education (OR = 0.387, p = 0.037), and history of blood donation (OR = 2.556, p = 0.016) in the Adult group were significantly associated with participants' willingness to donate biospecimens. The primary motivation for donation was helping other patients with cancer (65.4% vs. 24.5%,

Attitudes of oncology patients’ towards biospecimen donation for biobank research

“…The overall results of this study showed that, although fewer than half of oncology patients had heard of biobanks (43.4%), lack of biobank awareness had no effect on respondents’ affirmative attitudes towards donation for research purposes, as 93.1% of patients declared a willingness to share their HBM with a biobank. These findings corroborate previous studies that showed a broad support for biobank participation and donation among cancer patient, whose willingness to share their biospecimens is much higher than in the general population ranging from 80 to 100% [ 34 – 39 , 40 , 41 ]. For example, while 84% of cancer outpatients in Australia were willing to share their tissue, and 96% were keen to have their biosamples stored for future research [ 41 ], among Eastern Morocco patients it was 80.7% [ 30 ] and among British patients 88% [ 34 ].…”

“…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 ].…”

“…Similar results were found among Chinese patients who declared themselves willing to donate left-over tissue (87.1%) and surplus blood (83.3%) [ 43 ]. Similarly, Gao et al showed that both guardians of children with cancer and adult cancer patients were willing to donate residual blood and marrow (86.5%), urine (85.7%), saliva and faeces (87.5%), extra blood (68.8%) [ 39 ]. This, confirms previous research showing that the peoples’ willingness to donate for biobank research is influenced, among other factors, by cultural beliefs about the body and its particular organs.…”

“…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 ]. This, however, should come as no surprise, since, as cancer patients frequently visit hospitals and depend on the healthcare system and scientific research, they display a high level of trust towards science and doctors.…”

“…To achieve this there is a need for better understanding the views of different stakeholders, including patients, who may share their human biological material (HBM) and associated health information for research purposes. Since many people, including patients, express many ethical, legal, and social concerns related to biobanking [ 28 , 32 – 39 ], knowing their perspective may help recruit new donors to contribute to cancer research.…”