Biobank research: who benefits from individual consent?
BMJPublished 4 October 2011Open access
Joanna Stjernschantz Forsberg, Mats Hansson, Stefan Eriksson
Citations48
Generate an AI Snapshot to get a quick, structured summary of this paper.
Study Snapshot
ObjectiveStudy objective
MethodsResearch methodology
PopulationPopulation studied
Sample sizeSample sizes
OutcomesStudy outcomes here
ResultsStudy results comes here
LimitationsResearch study limitations comes here
A concise AI-generated summary of the paper will appear here once you click Generate AI Snapshot.
TL;DR
Requiring informed consent for research on stored tissue samples and associated data safeguards the autonomy rights of donors but also runs counter to the interests of the individuals it purports to protect.
Abstract
Requiring informed consent for research on stored tissue samples and associated data safeguards the autonomy rights of donors. But Joanna Stjernschantz Forsberg, Mats Hansson, and Stefan Eriksson argue that this policy not only defeats the interest of society but also runs counter to the interests of the individuals it purports to protect
Keywords
Medicine
Journal of Medical EthicsSome limits of informed consent
492 Citations2003O. O'Neill
Since the point of consent procedures is to limit deception and coercion, they should be designed to give patients and others control over the amount of information they receive and opportunity to rescind consent already given.
Annual Review of Genomics and Human GeneticsThe Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic Biobanks
246 Citations2007Henry T. Greely
New methods of consent will need to be created to replace the blanket consent common to such endeavors, with a consent procedure that gives subjects some real control over what they might consider inappropriate use of their information and biological material.
Journal of Clinical OncologySources of Bias in Specimens for Research About Molecular Markers for Cancer
201 Citations2009David F. Ransohoff, Margaret L. Gourlay
A framework to help simplify and organize current problems in marker research is described by focusing on the role of specimens as a source of bias in observational research and using that focus to address problems and improve reliability.
Journal of the National Medical AssociationExamining Tuskegee: The Infamous Syphilis Study and Its Legacy
201 Citations2010Susan M. Reverby, Henry W. Foster
Journal of Medical EthicsBroadening consent—and diluting ethics?: Table 1
192 Citations2009Bjørn Hofmann
BioethicsCoding and Consent: Moral Challenges of the Database Project in Iceland
160 Citations2004Vilhjálmur Árnason
The idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research is described.
Ethics Codes in Medicine: Foundations and Achievements of Codification Since 1947
135 Citations2019Ulrich Tröhler, Stella Reiter-Theil +1 more
ScienceScience Gold Mine, Ethical Minefield
62 Citations2009Jennifer Couzin-Frankel
There are millions of blood samples in files that researchers want to access, raising public concern, and health agencies have launched a system 40 years ago to identify babies at risk.
Public Health GenomicsParticipant Characteristics That Influence Consent for Genetic Research in a Population-Based Survey: The Baltimore Epidemiologic Catchment Area Follow-Up
40 Citations2008Briana Mezuk, William W. Eaton +1 more
Investigating the sociodemographic and health characteristics associated with the willingness to donate a DNA sample, and consent to testing and long-term storage of that sample, among participants in a longitudinal community-based survey found Sociodemographic characteristics were unrelated to the willingnessto donate a biological sample.
Journal of Medical EthicsObtaining explicit consent for the use of archival tissue samples: practical issues
39 Citations2004Peter Furness, M L Nicholson
A requirement to obtain explicit consent for the study of archival tissue is likely, however, to block or at least seriously delay research, which is contrary to the public interest and specifically may harm the interests of the patients concerned.
BMJNeed for a wider view of autonomy in epidemiological research
34 Citations2010Mats Hansson
Review bodies put great importance on informed consent, but Mats Hansson argues that their narrow view of autonomy could be harming patients’ interests.
European Journal of CancerObtaining ‘fresh’ consent for genetic research with biological samples archived 10 years ago
30 Citations2009Eric Vermeulen, Marjanka K. Schmidt +3 more
Obtaining fresh consent for genetic research with stored tissue is possible at the cost of time and effort because most patients give consent for research with residual tissue.
Obstetrics and GynecologySample Bias Among Women With Retained DNA Samples for Future Genetic Studies
17 Citations2006Kjersti Aagaard‐Tillery, Baha M. Sibai +13 more
To evaluate whether women who agree to future use of their biologic specimens for genetic studies reflect the larger study population from which they are derived, genetic samples from women agreeing to their use in a sample repository may be representative of the index study cohort.
European Journal of EpidemiologyChanging defaults in biobank research could save lives too
15 Citations2009Joanna Stjernschantz Forsberg, Stefan Eriksson +1 more
It is concluded that instead of presuming that individuals do not wish to contribute to the advancement of healthcare through biobank research on previously taken samples, ethics committees should presume that they do.
Pediatric Blood & CancerCharacteristics of responders to a request for a buccal cell specimen among survivors of childhood cancer and their siblings
11 Citations2010Kirsten K. Ness, Chenghong Li +7 more
Analysis of biological samples in large cohort studies may provide insight into the mechanism of, and risk factors for, disease onset and progression.
Mayo Clinic ProceedingsParticipation Bias and Its Impact on the Assembly of a Genetic Specimen Repository for a Myocardial Infarction Cohort
7 Citations2007Adelaide M. Arruda‐Olson, Susan A. Weston +4 more
Assessment of participation bias in the assembly of a specimen repository for genetic studies and the association of participation with outcome within the Olmsted County myocardial infarction cohort found participants who provided blood specimens had better outcomes than those who provided tissue specimens.
Revista da Associação Médica BrasileiraTermo de consentimento e análise de material biológico armazenado
3 Citations2010Cristiano G. Duque, Daniela Maria de Paula Ramalho +1 more
Obtaining consent by postal and phone communication for retrospective genetic research with stored tissue samples is feasible, but there were costs and risks that cannot be neglected.