Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.

Authors:
van der Velden FJS; Lim E; Gills L; Broadey J; Hayes L and 7 more

Journal:
BMC Med Ethics

Publication Year: 2023

DOI:
10.1186/s12910-023-00925-w

PMCID:
PMC10324191

PMID:
37407992

Journal Information

Journal Title: BMC Med Ethics

Detailed journal information not available.

Publication Details

Subject Category: Medical Ethics

Available in Europe PMC: Yes

Available in PMC: Yes

PDF Available: No

Transparency Score
4/6
66.7% Transparent
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Evidence found in paper:

"Declarations Ethics approval and consent to participateThis study is part of the DIAMONDS study and has ethics approval for the UK under: IRAS 209035, REC 16/LO/1684.This study was registered and had its protocols approved by the Newcastle upon Hospitals NHS Foundation Trust under local audit registry number 13906.This study and its methods were carried out in accordance with the Declaration of Helsinki and local NHS Trust policies.Participants were members of the community, and not clinical patients. Informed consent was obtained from all participants. Written informed consent for the survey from parents or legal guardians was not required or obtained for patients under 16 years of age, with approval from the Newcastle and North Tyneside Research Ethics Committee. Parental input was seen as a barrier to CYP participation and would potentially influence the responses. The co-produced element of the project ensured the subject and information created was CYP friendly, which significantly impacts their capacity to understand the circumstances and details of the research being proposed. The information was written and presented in a CYP friendly manner, to ensure CYP had all the information required to consent. Gillick competence was applied: reading the introductory information paragraph preceding the survey and the ability to complete the survey constituted consent for participants under the age of 16 years. Consent for publicationNot applicable. Competing interestsThe authors declare no competing interests. Competing interests The authors declare no competing interests."

Evidence found in paper:

"Funding This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 848196. The funding body played no role in the design of the study and collection, analysis, interpretation of data, and in writing the manuscript."

Evidence found in paper:

"Declarations: Ethics approval and consent to participateThis study is part of the DIAMONDS study and has ethics approval for the UK under: IRAS 209035, REC 16/LO/1684.This study was registered and had its protocols approved by the Newcastle upon Hospitals NHS Foundation Trust under local audit registry number 13906.This study and its methods were carried out in accordance with the Declaration of Helsinki and local NHS Trust policies.Participants were members of the community, and not clinical patients. Informed consent was obtained from all participants. Written informed consent for the survey from parents or legal guardians was not required or obtained for patients under 16 years of age, with approval from the Newcastle and North Tyneside Research Ethics Committee. Parental input was seen as a barrier to CYP participation and would potentially influence the responses. The co-produced element of the project ensured the subject and information created was CYP friendly, which significantly impacts their capacity to understand the circumstances and details of the research being proposed. The information was written and presented in a CYP friendly manner, to ensure CYP had all the information required to consent. Gillick competence was applied: reading the introductory information paragraph preceding the survey and the ability to complete the survey constituted consent for participants under the age of 16 years.: Consent for publicationNot applicable.: Competing interestsThe authors declare no competing interests. Ethics approval and consent to participate: This study is part of the DIAMONDS study and has ethics approval for the UK under: IRAS 209035, REC 16/LO/1684.: This study was registered and had its protocols approved by the Newcastle upon Hospitals NHS Foundation Trust under local audit registry number 13906.: This study and its methods were carried out in accordance with the Declaration of Helsinki and local NHS Trust policies.: Participants were members of the community, and not clinical patients. Informed consent was obtained from all participants. Written informed consent for the survey from parents or legal guardians was not required or obtained for patients under 16 years of age, with approval from the Newcastle and North Tyneside Research Ethics Committee. Parental input was seen as a barrier to CYP participation and would potentially influence the responses. The co-produced element of the project ensured the subject and information created was CYP friendly, which significantly impacts their capacity to understand the circumstances and details of the research being proposed. The information was written and presented in a CYP friendly manner, to ensure CYP had all the information required to consent. Gillick competence was applied: reading the introductory information paragraph preceding the survey and the ability to complete the survey constituted consent for participants under the age of 16 years."

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Paper is freely available to read
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Last Updated: Aug 05, 2025