Evidence map›Paper›PMID 36238242›Full record

ReviewFrontiers in public health2022

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

Sara Casati, Bridget Ellul, Michaela Th Mayrhofer, Marialuisa Lavitrano, Elodie Caboux, Zisis Kozlakidis

Abstract readReview
In one paragraph

Review in Frontiers in public health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed.

  1. Review
  2. Review
  3. Article
  4. Article
  5. Frontiers in cellular and infection microbiology · 2025
    Review
  6. Article
  7. Article
  8. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Sara CasatiELSI Services & Research Unit, BBMRI-ERIC, Graz, Austria.
Bridget EllulCentre for Molecular Medicine & Biobanking, University of Malta, Msida, Malta.
Michaela Th MayrhoferELSI Services & Research Unit, BBMRI-ERIC, Graz, Austria.
Marialuisa LavitranoDepartment of Medicine and Surgery, University Milano-Biccoca, Milano, Italy.
Elodie CabouxLaboratory Services and Biobank, International Agency for Research on Cancer, IARC, WHO, Lyon, France.
Zisis KozlakidisLaboratory Services and Biobank, International Agency for Research on Cancer, IARC, WHO, Lyon, France.

Funding

World Health Organization 001
6 · The paper itself

Abstract

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.

Indexed as

Biological Specimen BanksResearch PersonnelAdultChildEuropeHumansParentsTranslational Research, Biomedicalassentchildrenempowermentengagementmaturitypaediatric biobankingvulnerability

Identifiers

PMID36238242
PMCPMC9551217

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.