title: An empirical examination of the management of return of individual research results and incidental findings in genomic biobanks.
abstract: OBJECTIVE
  The purpose of this study was to examine and document the management and return of individual research results and incidental findings to research participants among biobanks.
  
  
  METHODS
  A comprehensive Internet search was completed to identify biobanks and collect available documents about biobanks and their procedures and policies regarding the return of results. The Internet search was supplemented by an e-mail request to gather further such documents. A total of 2,366 documents were collected for analysis from a sample of 85 biobanks.
  
  
  RESULTS
  The major finding of this empirical work is that the majority of the biobanks in the sample do not address the return of individual research results and incidental findings in their publicly available documents.
  
  
  CONCLUSIONS
  The results suggest that there is a need for more discussion and guidance about the most appropriate ways for biobanks to consider the return of individual research results and incidental findings and generate policies and procedures that address this issue.
authors.affiliation: Department of Educational Psychology, College of Education and Human Development, University of Minnesota, Twin Cities, Minneapolis, Minnesota, USA.
authors.forename: Gina
authors.initials: G
authors.lastname: Johnson
authors.forename: Frances
authors.initials: F
authors.lastname: Lawrenz
authors.forename: Mao
authors.initials: M
authors.lastname: Thao
mesh_terms: D003625:Data Collection / Q000706:statistics & numerical data; D005826:Genetics, Medical / Q000941:ethics / Q000706:statistics & numerical data; D023281:Genomics / Q000941:ethics* / Q000706:statistics & numerical data; D006801:Humans; D033162:Incidental Findings; D020407:Internet; D008490:Medical Informatics / Q000941:ethics* / Q000706:statistics & numerical data; D035842:Research Subjects; D014342:Truth Disclosure / Q000941:ethics