Cargando…

Bridging consent: from toll bridges to lift bridges?

BACKGROUND: The ability to share human biological samples, associated data and results across disease-specific and population-based human research biobanks is becoming increasingly important for research into disease development and translation. Although informed consent often does not anticipate su...

Descripción completa

Detalles Bibliográficos
Autores principales: Budin-Ljøsne, Isabelle, Tassé, Anne Marie, Knoppers, Bartha Maria, Harris, Jennifer R
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2011
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3206837/
https://www.ncbi.nlm.nih.gov/pubmed/21970509
http://dx.doi.org/10.1186/1755-8794-4-69
_version_ 1782215491995041792
author Budin-Ljøsne, Isabelle
Tassé, Anne Marie
Knoppers, Bartha Maria
Harris, Jennifer R
author_facet Budin-Ljøsne, Isabelle
Tassé, Anne Marie
Knoppers, Bartha Maria
Harris, Jennifer R
author_sort Budin-Ljøsne, Isabelle
collection PubMed
description BACKGROUND: The ability to share human biological samples, associated data and results across disease-specific and population-based human research biobanks is becoming increasingly important for research into disease development and translation. Although informed consent often does not anticipate such cross-domain sharing, it is important to examine its plausibility. The purpose of this study was to explore the feasibility of bridging consent between disease-specific and population-based research. Comparative analyses of 1) current ethical and legal frameworks governing consent and 2) informed consent models found in disease-specific and population-based research were conducted. DISCUSSION: Ethical and legal frameworks governing consent dissuade cross-domain data sharing. Paradoxically, analysis of consent models for disease-specific and population-based research reveals such a high degree of similarity that bridging consent could be possible if additional information regarding bridging was incorporated into consent forms. We submit that bridging of consent could be supported if current trends endorsing a new interpretation of consent are adopted. To illustrate this we sketch potential bridging consent scenarios. SUMMARY: A bridging consent, respectful of the spirit of initial consent, is feasible and would require only small changes to the content of consents currently being used. Under a bridging consent approach, the initial data and samples collection can serve an identified research project as well as contribute to the creation of a resource for a range of other projects.
format Online
Article
Text
id pubmed-3206837
institution National Center for Biotechnology Information
language English
publishDate 2011
publisher BioMed Central
record_format MEDLINE/PubMed
spelling pubmed-32068372011-11-03 Bridging consent: from toll bridges to lift bridges? Budin-Ljøsne, Isabelle Tassé, Anne Marie Knoppers, Bartha Maria Harris, Jennifer R BMC Med Genomics Debate BACKGROUND: The ability to share human biological samples, associated data and results across disease-specific and population-based human research biobanks is becoming increasingly important for research into disease development and translation. Although informed consent often does not anticipate such cross-domain sharing, it is important to examine its plausibility. The purpose of this study was to explore the feasibility of bridging consent between disease-specific and population-based research. Comparative analyses of 1) current ethical and legal frameworks governing consent and 2) informed consent models found in disease-specific and population-based research were conducted. DISCUSSION: Ethical and legal frameworks governing consent dissuade cross-domain data sharing. Paradoxically, analysis of consent models for disease-specific and population-based research reveals such a high degree of similarity that bridging consent could be possible if additional information regarding bridging was incorporated into consent forms. We submit that bridging of consent could be supported if current trends endorsing a new interpretation of consent are adopted. To illustrate this we sketch potential bridging consent scenarios. SUMMARY: A bridging consent, respectful of the spirit of initial consent, is feasible and would require only small changes to the content of consents currently being used. Under a bridging consent approach, the initial data and samples collection can serve an identified research project as well as contribute to the creation of a resource for a range of other projects. BioMed Central 2011-10-04 /pmc/articles/PMC3206837/ /pubmed/21970509 http://dx.doi.org/10.1186/1755-8794-4-69 Text en Copyright ©2011 Budin-Ljøsne et al; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Debate
Budin-Ljøsne, Isabelle
Tassé, Anne Marie
Knoppers, Bartha Maria
Harris, Jennifer R
Bridging consent: from toll bridges to lift bridges?
title Bridging consent: from toll bridges to lift bridges?
title_full Bridging consent: from toll bridges to lift bridges?
title_fullStr Bridging consent: from toll bridges to lift bridges?
title_full_unstemmed Bridging consent: from toll bridges to lift bridges?
title_short Bridging consent: from toll bridges to lift bridges?
title_sort bridging consent: from toll bridges to lift bridges?
topic Debate
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3206837/
https://www.ncbi.nlm.nih.gov/pubmed/21970509
http://dx.doi.org/10.1186/1755-8794-4-69
work_keys_str_mv AT budinljøsneisabelle bridgingconsentfromtollbridgestoliftbridges
AT tasseannemarie bridgingconsentfromtollbridgestoliftbridges
AT knoppersbarthamaria bridgingconsentfromtollbridgestoliftbridges
AT harrisjenniferr bridgingconsentfromtollbridgestoliftbridges