Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives
Fabian van der Velden, Lily Gills, Jasmin Broadey, Louise Hayes, Eve Roberts, Jack Courtney, Joanne Ball, Marieke Emonts, Emma Lim
BMJ Archives of Disease in Childhood, 17 August 2022
Abstract
Aims
Biobanking biological samples and consenting patients are common practice in paediatric infectious diseases research. We aimed to gain insight into young people’s knowledge, views and perspectives around current practices of biobanking and consent, in order to improve consent procedures.
Methods
We designed a structured electronic survey aimed at children and young people (CYP), 11-21 years of age, collecting demographic data, and views on biobanking and consent using four scenarios: 1) prospective consent, 2) deferred consent, 3) reconsent and assent age, and 4) animal studies. The survey was disseminated via Young Person’s Advisory Group North England (YPAGne) and other YPAGs social media channels and to the secondary schools of participating young people in this project. Data were analysed utilising a qualitative thematic approach by three independent data reviewers and common themes identified. Triangulation of data by a 4th reviewer occurred independently. Data were collected in two time waves. The second wave ensured data saturation.
Results
102 CYP completed the survey. All were ≥11 years old, the majority between 16-18 years (63.7%, n=65), female (66.7%, n=68), and from North East England and Cumbria (82.4%, n=84). 73 had no prior knowledge of biobanking (72.3%). Prospective consent acceptability for biobanking was high (91.2%, n=93), with main themes being ‘altruism’ and ‘potential benefits outweigh individual risks’. Main themes against were ‘increased risk of complications’ and ‘needle phobia’. Deferred consent acceptability was lower (84.3%, n= 86), common themes were: ‘altruism’, ‘body integrity’, and ‘sample frugality’. Participants state that prospective consent is preferable, but not always appropriate given the clinical situation. Communication is key and it is important to state why deferred consent is needed, and participation can still be declined. Those opposing deferred consent state it violated their integrity and takes away their control over their own body. Reconsent once children reach the age of informed assent was preferred by 76.5% of CYP (n=78), the majority stating an age >14 years as appropriate. 79.2% would want to be informed if their biobanked sample is used in future research (n=80). Just over half agrees with samples being used for animal testing (54.5%, n=55), which goes up to 80.2% (n=81) if explained as the last necessary step prior to human testing for medical research.
Conclusion
Acceptability of prospective and deferred consent for biobanking is high among CYP, with ‘altruism’, ‘frugality’ and ‘body integrity’ as important themes. Justification and clear communication are paramount and assent should be obtained from any CYP with capacity. CYP should be part of the consenting procedure, not just their parent/legal guardian.

Biobanks in the low-and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study involving biobank managers
Research
Ahmed Samir Abdelhafiz, Mamoun Ahram, Maha Emad Ibrahim, Alya Elgamri, Ehsan Gamel, Rania Labib, Henry Silverman
BMC Medical Ethics volume, 14 August 2022; 23(83)
Open Access
Abstract
Background
Biobanks have recently been established in several low-and middle-income countries (LMICs) in the Arab region of the Middle East. We aimed to explore the views of biobank managers regarding the challenges, ethical issues, and governance arrangements of their biobanks.
Methods
In-depth semi-structured qualitative interviews were conducted with a purposive sample of eight biobank managers from Egypt (6), Jordan (1), and Sudan (1). Interviews were performed either face-to-face, by phone, or via Zoom and lasted approximately 45–75 min. After verbal consent, interviews were recorded and then transcribed. The authors performed a thematic analysis of the transcripts independently and then integrated the themes via a consensus process.
Results
Biobank managers discussed the main challenges in establishing their biobanks. These included the staff’s lack of experience and training, limited funds, deficit awareness of biobanks, obtaining funding from different sources. Only four reported they were active in distributing biospecimens and health data to researchers. Six biobanks used a broad consent model, one used tiered consent, and another allowed participants to opt-out of being recontacted. Five managers avoided partnerships with pharmaceutical companies due to concerns with unfavorable reactions from the community. Five managers did not have clear policies for returning research results to the donors. Five expressed challenges with sample and data sharing with international collaborators; all five used material transfer agreements. The biobank managers revealed variable governance arrangements and activities with community involving awareness and educational efforts rather than active engagement. Several expressed the importance of transparency with the operations of their biobanks and gaining the trust of their stakeholders.
Conclusion
Managers of biobanks in LMICs in the Arab Middle East encounter financial, operational, and social challenges toward their sustainability efforts. Discussions with key stakeholders are warranted to manage ethical issues involving informed consent, privacy, data sharing, and the return of results. We recommend that biobank managers in the Arab Middle East form collaborative networks within the region and internationally, develop trusting governance relationships with their stakeholders, and pursue engagement activities with their communities to enhance trust.