Document Detail

Practical implementation issues and challenges for biobanks in the return of individual research results.
MedLine Citation:
PMID:  22323073     Owner:  NLM     Status:  MEDLINE    
Whether or not to give research results back to individuals whose specimens are used for biomedical research is a subject of considerable controversy. Much of the debate has been focused around the ethical and legal concerns with some consideration of broader social issues such as whether or not people will be affected by such information for employment or health care. Much less attention has been paid to biobanks that collect the specimens used to generate the research findings and the issues and operational requirements for implementing return of individual research results. In this article, we give the biobanks' perspective and highlight that given the diversity among the types of biobanks, it may be difficult to design and implement a blanket policy in this complex area. We discuss the variability in the types of biobanks and some important issues that should be considered in determining whether or not research results should be provided to individuals whose specimens are used in biomedical research. We also discuss challenges that should be considered in implementing any approaches to the return of research results.
Marianna J Bledsoe; William E Grizzle; Brian J Clark; Nikolajs Zeps
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Publication Detail:
Type:  Journal Article; Research Support, N.I.H., Extramural     Date:  2012-02-09
Journal Detail:
Title:  Genetics in medicine : official journal of the American College of Medical Genetics     Volume:  14     ISSN:  1530-0366     ISO Abbreviation:  Genet. Med.     Publication Date:  2012 Apr 
Date Detail:
Created Date:  2012-04-06     Completed Date:  2012-08-08     Revised Date:  2013-06-26    
Medline Journal Info:
Nlm Unique ID:  9815831     Medline TA:  Genet Med     Country:  United States    
Other Details:
Languages:  eng     Pagination:  478-83     Citation Subset:  IM    
Department of Veterans Affairs, Washington, DC, USA.
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MeSH Terms
Biomedical Research / ethics*,  methods,  statistics & numerical data
Medical Informatics / ethics*,  methods,  statistics & numerical data
Research Subjects*
Researcher-Subject Relations / ethics
Tissue Banks / ethics*
Truth Disclosure / ethics
Grant Support
2-R01-HG003178/HG/NHGRI NIH HHS; P20 CA101955/CA/NCI NIH HHS; P50 CA101955/CA/NCI NIH HHS

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