Gina Johnson1, Frances Lawrenz, Mao Thao. 1. Department of Educational Psychology, College of Education and Human Development, University of Minnesota, Twin Cities, Minneapolis, Minnesota, USA.
Abstract
PURPOSE: 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. CONCLUSION: 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.
PURPOSE: 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. CONCLUSION: 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: Julia Wynn; Josue Martinez; Jimmy Duong; Yuan Zhang; Jo Phelan; Abby Fyer; Robert Klitzman; Paul S Appelbaum; Wendy K Chung Journal: J Genet Couns Date: 2015-01-17 Impact factor: 2.537
Authors: Laura A Siminoff; Maureen Wilson-Genderson; Maghboeba Mosavel; Laura Barker; Jennifer Trgina; Heather M Traino Journal: Genet Test Mol Biomarkers Date: 2017-01-25
Authors: Nicole L Allen; Elizabeth W Karlson; Susan Malspeis; Bing Lu; Christine E Seidman; Lisa Soleymani Lehmann Journal: Mayo Clin Proc Date: 2014-06 Impact factor: 7.616
Authors: Susan M Wolf; Brittney N Crock; Brian Van Ness; Frances Lawrenz; Jeffrey P Kahn; Laura M Beskow; Mildred K Cho; Michael F Christman; Robert C Green; Ralph Hall; Judy Illes; Moira Keane; Bartha M Knoppers; Barbara A Koenig; Isaac S Kohane; Bonnie Leroy; Karen J Maschke; William McGeveran; Pilar Ossorio; Lisa S Parker; Gloria M Petersen; Henry S Richardson; Joan A Scott; Sharon F Terry; Benjamin S Wilfond; Wendy A Wolf Journal: Genet Med Date: 2012-04 Impact factor: 8.822
Authors: Angela R Bradbury; Linda Patrick-Miller; Brian L Egleston; Kara N Maxwell; Laura DiGiovanni; Jamie Brower; Dominique Fetzer; Jill Bennett Gaieski; Amanda Brandt; Danielle McKenna; Jessica Long; Jacquelyn Powers; Jill E Stopfer; Katherine L Nathanson; Susan M Domchek Journal: JCO Precis Oncol Date: 2018-04-16