It is not a big deal: a qualitative study of clinical biobank donation experience and motives

Abstract

Background The success of biobanking is directly linked to the willingness of people to donate their biological materials for research and storage. Ethical issues related to patient consent are an essential component of the current biobanking agenda. The majority of data available are focused on population-based biobanks in USA, Canada and Western Europe. The donation decision process and its ethical applications in clinical populations and populations in countries with other cultural contexts are very limited. This study aimed to evaluate the decision-making experience of the clinical biobank donors, as well as psychological and social motivators and deterrents of this decision and associated ethical risks. Methods Semi-structured interviews were conducted in two medical institutions, in St Petersburg (Russia), in 2016–2017, among 13 donors of a clinical biobank (pregnant women, cardiac patients, and patients with multiple sclerosis) and three donation organisers—medical specialists involved in recruiting donors for a clinical biobank. Analysis of interview data was based on qualitative content analysis. Results Donors of a clinical biobank express beliefs in the absence of risks associated with the donation. The primary motivators for donating to the biobank were: prosocial, indirect reciprocity (response to or anticipation of an act in kind by a third party), intrinsic motivation (to enhance their self-esteem and satisfying their curiosity about the donation process), and comparability with personal values. A high level of trust in biomedical research and the particular physician can contribute to a favourable decision. The overall decision-making process regarding the biobank donation could be described as quick and not based on a careful reading of informed consent documents. The integration of biobank donation decision-making in the process of medical care might prompt patient to donate to biobank without proper consideration. The specific type of therapeutic misconception—the presence of unrealistic hope that donation could provide a direct benefit for a third person in need was discovered. Conclusions Patients recruited to a clinical biobank in Russia have virtually no concerns as to the storage of their biomaterials. The donation decision is mainly motivated by prosocial attitudes and other factors that are similar to the motivating factors of blood donation. The fact of going through inpatient treatment and poor differentiation between donation for other people's benefit and for research purposes can make the process of obtaining consent more ethically problematic.

Biobanking and Consenting to Research: a Qualitative Thematic Analysis of Young People’s Perspectives

“…In our surveyed population we demonstrate CYP have positive attitudes towards participation in research involving biobanks, and acceptability of both prospective and deferred consent is high. Altruism, sample frugality and bodily integrity were important themes for CYP, concurrent with views of adults 17,18 , and CYP participating in critical care trials 15 . We acknowledge that there is hesitancy in a minority of CYP to donate, due to needle phobia, pain, or feelings of repugnance towards the bodily uid to be donated.…”

“…Although aforementioned ethical issues are under debate, the literature mainly focuses on the theoretical debate 4,11,12 or involves perspectives of parents or legal guardians 5,13,14 , practitioners 9 , the critically ill 8,15 or adolescents already participating in research involving biobanks 16,17 . Perspectives of the general population mainly involves adults, with university students being closest to the paediatric population 18,19 .…”

“…There are concerns that CYP might lack capacity to give meaningful consent particularly around the complex concept of biobanking. 15,30 however, there is evidence that even adults lack a deeper understanding of biobanking 17 . McGregor and Ott 31 demonstrated the capacity of adolescents/young adults (aged 12-24 years) to consent is similar to that of adults.…”

“…Biobanked samples might be stored and used for decades, by which time the CYP will have developed capacity, and may have new insights regarding use of their donated samples and associated personal data. 4 This suggests that reconsent may be necessary to justify use of the samples beyond childhood.Although aforementioned ethical issues are under debate, the literature mainly focuses on the theoretical debate 4,11,12 or involves perspectives of parents or legal guardians 5,13,14 , practitioners 9 , the critically ill 8,15 or adolescents already participating in research involving biobanks 16,17 . Perspectives of the general population mainly involves adults, with university students being closest to the paediatric population 18,19 .…”

The Ethical Challenges of Umbilical Cord Blood Stem Cell Banking: A Qualitative Study

“…Despite the significance of the subject and the growing use of cell therapy and other products derived from donated and stored tissues in biobanks, the issue of storing human tissues in biobanks remains contentious, particularly regarding its social implications (14). Society's acceptance of these banks, both as potential donors and recipients, plays a direct role in this (15). Additionally, since perspectives on various topics, including biobanks and their ethical challenges, are influenced by the cultural background of a given society, and research on this topic has predominantly been conducted in Western societies, exploring the viewpoints of specialists and users of the services offered by these banks within the Iranian context is deemed crucial.…”