Pediatric Biobanking: Kids Are Not Just Little Adults

Catchpoole, Daniel; Carpentieri, David; Vercauteren, Suzanne; Wadhwa, Lalita; Schleif, William; Zhou, Li; Zhou, Junmei; Labib, Rania M.; Smits, Elke; Conradie, Engela H

doi:10.1089/bio.2020.29071.djc

Cited by 7 publications

(7 citation statements)

References 11 publications

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“…To make research easily understandable for everyone as well as to advocate research results and requirements appropriately, research needs to become an ordinary issue and engagement activities have to be conceptualized, executed and maintained as such ( 107 ). Pediatric biobanks situated within, or working with pediatric hospitals ( 4 ) are ideally placed to ensure this happens; they are in the best position to obtain the maximum number of samples and as early as possible during disease, but also to engage with children and their parents/guardians. Consider, for example, the Precision Link Biobank for Health Discovery (Boston Children's Hospital); it was created to provide valuable human samples for researchers to advance knowledge of health and disease.…”

Section: Specific Societal Issuesmentioning

confidence: 99%

“…Moreover, biobanks function through a network of researchers, clinicians, regulatory stakeholders and public advocacy groups, which fosters a strong platform for scientific collaboration ( 3 ). This is even more important for pediatric research, where close co-operation between multiple biobanks presents shared avenues for maximizing scarce biological samples, necessary to promote the translation of scientific advances to the development of clinical care and health policies specific to the pediatric population ( 4 ).…”

Section: Introductionmentioning

confidence: 99%

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Paediatric biobanking for health: The ethical, legal, and societal landscape

Casati

Ellul²,

Mayrhofer³

et al. 2022

Front. Public Health

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Biobanks play a central role in pediatric translational research, which deals primarily with genetic data from sample-based research. However, participation of children in biobanking has received only limited attention in the literature, even though research in general and in clinical trials in particular have a long history in involving minors. So, we resolved to explore specific challenging ethical, legal, and societal issues (ELSI) in the current pediatric biobanking landscape to propose a way forward for biobanking with children as partners in research. Methodologically, we first established the accessibility and utilization of pediatric biobanks, mainly in Europe. This was supported by a literature review related to children's participation, taking into account not only academic papers but also relevant guidelines and best-practices. Our findings are discussed under five themes: general vulnerability; ethical issues—balancing risks and benefits, right to an open future, return of results including secondary findings; legal issues—capacity and legal majority; societal issues—public awareness and empowerment; and responsible research with children. Ultimately, we observed an on-going shift from the parents'/guardians' consent being a sine-qua-non condition to the positive minor's agreement: confirming that the minor is the participant, not the parent(s)/guardian(s). This ethical rethinking is paving the way toward age-appropriate, dynamic and participatory models of involving minors in decision-making. However, we identified a requirement for dynamic tools to assess maturity, a lack of co-produced engagement tools and paucity of shared best practices. We highlight the need to provide empowerment and capability settings to support researchers and biobankers, and back this with practical examples. In conclusion, equipping children and adults with appropriate tools, and ensuring children's participation is at the forefront of responsible pediatric biobanking, is an ethical obligation, and a cornerstone for research integrity.

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Section: Specific Societal Issuesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Paediatric biobanking for health: The ethical, legal, and societal landscape

Casati

Ellul²,

Mayrhofer³

et al. 2022

Front. Public Health

View full text Add to dashboard Cite

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“…As a resource, the CHM Biobank will serve as a biomedical resource for the global research community and also stands to benefit the wider South African community through the advancement of both medical and scientific knowledge, possible treatments, and technological advances through aligned studies. 19 This review provides an overview of key literature on the limitations, challenges, and opportunities facing RDs and the proposed development of the CHM Biobank, including related ethical considerations in South Africa.…”

Section: South Africa's Responsementioning

confidence: 99%

An Overview of Benefits and Challenges of Rare Disease Biobanking in Africa, Focusing on South Africa

Conradie

Malherbe

Hendriksz

et al. 2021

Biopreservation and Biobanking

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CHM) is in the process of establishing the first rare disease (RD) biobank in South Africa and Africa. The CHM Biobank's main focus is on the collection of samples and information for rare congenital disorders. Approximately 72% of all RDs have a genetic origin, of which 70% have an exclusive pediatric onset. The need for such a biobank was identified by the CHM diagnostic laboratory. Feedback toward this initiative was overwhelmingly positive at the first stakeholder meeting in August 2019. However, gaining support from the public sector and recruiting of participants have proven to be challenging. Problems experienced to date include lack of support from government and clinicians; lack of knowledge on RDs (patients and clinicians); public health care focus not directed toward RDs; patients not returning for follow-up visits; and unwillingness to participate due to fear of exploitation. The CHM Biobank's vision and goals are aligned to address a national and international research need: it will provide a valuable resource for scientists to improve what is known about these diseases; to better understand the natural history and pathophysiology; to optimize diagnostic methods; and to potentially develop treatments. The genetic variability of the South African population provides added value to the RD biobank. This review provides a brief overview of the literature on the challenges and benefits of an RD biobank and how this relates to low-and middle-income countries (LMIC) like South Africa. The aim of the review is to draw attention to the potential benefits of such an undertaking and to create awareness, at both local and global level, toward some of the unique collective considerations that an RD biobank in LMIC (also unique South African challenges) faces on an operational, collaborate, and sustainability level.

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“…Therefore, the value of biobanks in pediatrics has become of strategic interest in biomedical research. In particular, pediatric biobanks could assist in providing personalized diagnostic and therapeutic solutions and accurately identifying possible participants for a clinical trial in a vulnerable patient cohort, such as children [ 10 , 11 ]. Furthermore, the importance of pediatric biobanks has increased because children’s oncological diseases are generally uncommon, and cancer remains a leading cause of death among children and adolescents.…”

Section: Introductionmentioning

confidence: 99%

Pediatric biobanks to enhance clinical and translational research for children

et al. 2023

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Including children in biomedical research is an argument for continual reflection and practice refinement from an ethical and legal standpoint. Indeed, as children reach adulthood, a reconsent method should be used, and data connected with samples should ideally be updated based on the children’s growth and long-term results. Furthermore, because most pediatric disorders are uncommon, children’s research initiatives should conform to standard operating procedures (SOPs) set by worldwide scientific organizations for successfully sharing data and samples. Here, we examine how pediatric biobanks can help address some challenges to improve biomedical research for children. Indeed, modern biobanks are evolving as complex research platforms with specialized employees, dedicated spaces, information technologies services (ITS), and ethical and legal expertise. In the case of research for children, biobanks can collaborate with scientific networks (i.e., BBMRI–ERIC) and provide the collection, storage, and distribution of biosamples in agreement with international standard procedures (ISO-20387). Close collaboration among biobanks provides shared avenues for maximizing scarce biological samples, which is required to promote the translation of scientific breakthroughs for developing clinical care and health policies tailored to the pediatric population. Moreover, biobanks, through their science communication and dissemination activities (i.e., European Biobank Week), may be helpful for children to understand what it means to be engaged in a research study, allowing them to see it as a pleasant, useful, and empowering experience. Additionally, biobanks can notify each participant about which projects have been accomplished (i.e., through their websites, social media networks, etc.); they can facilitate future reconsent procedures and update sample-associated data based on the children’s growth. Finally, because of the increasing interest from public and commercial organizations in research efforts that include the sharing and reuse of health data, pediatric biobanks have a crucial role in this context. Consequently, they could benefit from funding opportunities for sustaining research activities even regarding rare pediatric disorders. Conclusion : Pediatric biobanks are helpful for providing biological material for research purposes, addressing ethical and legal issues (i.e. data protection, consent, etc.), and providing control samples from healthy children of various ages and from different geographical regions and ethnicities. Therefore, it is vital to encourage and maintain children’s engagement in medical research programs and biobanking activities, especially as children become adults, and reconsent procedures must be applied. What is Known: • Biobanks are critical research infrastructures for medical research, especially in the era of “omic” science. However, in light of their fragility and rights children’s participation in biobanking an...

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Pediatric Biobanking: Kids Are Not Just Little Adults

Cited by 7 publications

References 11 publications

Paediatric biobanking for health: The ethical, legal, and societal landscape

Paediatric biobanking for health: The ethical, legal, and societal landscape

An Overview of Benefits and Challenges of Rare Disease Biobanking in Africa, Focusing on South Africa

Pediatric biobanks to enhance clinical and translational research for children

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