Literature DB >> 26479559

Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.

Laura M Beskow1, P Pearl O'Rourke2.   

Abstract

We surveyed IRB chairs' perspectives on offering individual genetic research results to participants and families, including family members of deceased participants, and the IRB's role in addressing these issues. Given a particular hypothetical scenario, respondents favored offering results to participants but not family members, giving choices at the time of initial consent, and honoring elicited choices. They felt IRBs should have authority regarding the process issues, but a more limited role in medical and scientific issues.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID： 26479559      PMCID： PMC4617597          DOI： 10.1111/jlme.12292

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN： 1073-1105            Impact factor:   1.718


  42 in total

Review 1.  Disclosure of individual genetic data to research participants: the debate reconsidered.

Authors:  Annelien L Bredenoord; Hester Y Kroes; Edwin Cuppen; Michael Parker; Johannes J M van Delden
Journal:  Trends Genet       Date:  2010-12-27       Impact factor: 11.639

2.  Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.

Authors:  Carmen Radecki Breitkopf; Gloria M Petersen; Susan M Wolf; Kari G Chaffee; Marguerite E Robinson; Deborah R Gordon; Noralane M Lindor; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

Review 3.  Return of individual research results and incidental findings: facing the challenges of translational science.

Authors:  Susan M Wolf
Journal:  Annu Rev Genomics Hum Genet       Date:  2013-07-15       Impact factor: 8.929

4.  The search for clarity in communicating research results to study participants.

Authors:  D I Shalowitz; F G Miller
Journal:  J Med Ethics       Date:  2008-09       Impact factor: 2.903

5.  Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.

Authors:  Susan M Wolf; Wylie Burke; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

6.  Money, coercion, and undue inducement: attitudes about payments to research participants.

Authors:  Emily A Largent; Christine Grady; Franklin G Miller; Alan Wertheimer
Journal:  IRB       Date:  2012 Jan-Feb

Review 7.  Managing incidental findings in human subjects research: analysis and recommendations.

Authors:  Susan M Wolf; Frances P Lawrenz; Charles A Nelson; Jeffrey P Kahn; Mildred K Cho; Ellen Wright Clayton; Joel G Fletcher; Michael K Georgieff; Dale Hammerschmidt; Kathy Hudson; Judy Illes; Vivek Kapur; Moira A Keane; Barbara A Koenig; Bonnie S Leroy; Elizabeth G McFarland; Jordan Paradise; Lisa S Parker; Sharon F Terry; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

8.  Return of research results from genomic biobanks: cost matters.

Authors:  Marianna J Bledsoe; Ellen Wright Clayton; Amy L McGuire; William E Grizzle; P Pearl O'Rourke; Nikolajs Zeps
Journal:  Genet Med       Date:  2012-08-30       Impact factor: 8.822

9.  Institutional review boards' use and understanding of certificates of confidentiality.

Authors:  Laura M Beskow; Devon K Check; Emily E Namey; Lauren A Dame; Li Lin; Alexandra Cooper; Kevin P Weinfurt; Leslie E Wolf
Journal:  PLoS One       Date:  2012-09-04       Impact factor: 3.240

10.  Incidental genetic findings in randomized clinical trials: recommendations from the Genomics and Randomized Trials Network (GARNET).

Authors:  Ebony B Bookman; Corina Din-Lovinescu; Bradford B Worrall; Teri A Manolio; Siiri N Bennett; Cathy Laurie; Daniel B Mirel; Kimberly F Doheny; Garnet L Anderson; Kate Wehr; Richard Weinshilboum; Donna T Chen
Journal:  Genome Med       Date:  2013-01-30       Impact factor: 11.117
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  12 in total

1.  Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.

Authors:  Conrad V Fernandez; P Pearl O'Rourke; Laura M Beskow
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Return of individual genomic research results: what do consent forms tell participants?

Authors:  Stacey Pereira; Jill Oliver Robinson; Amy L McGuire
Journal:  Eur J Hum Genet       Date:  2016-06-22       Impact factor: 4.246

3.  Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach.

Authors:  Kathleen A Culhane-Pera; Robert J Straka; MaiKia Moua; Youssef Roman; Pachia Vue; Kang Xiaaj; May Xia Lo; Mai Lor
Journal:  J Community Genet       Date:  2017-01-10

4.  Traceback: A Proposed Framework to Increase Identification and Genetic Counseling of BRCA1 and BRCA2 Mutation Carriers Through Family-Based Outreach.

Authors:  Goli Samimi; Marcus Q Bernardini; Lawrence C Brody; Charlisse F Caga-Anan; Ian G Campbell; Georgia Chenevix-Trench; Fergus J Couch; Michael Dean; Joanne A de Hullu; Susan M Domchek; Ronny Drapkin; Heather Spencer Feigelson; Michael Friedlander; Mia M Gaudet; Marline G Harmsen; Karen Hurley; Paul A James; Janice S Kwon; Felicitas Lacbawan; Stephanie Lheureux; Phuong L Mai; Leah E Mechanic; Lori M Minasian; Evan R Myers; Mark E Robson; Susan J Ramus; Lisa F Rezende; Patricia A Shaw; Thomas P Slavin; Elizabeth M Swisher; Masataka Takenaka; David D Bowtell; Mark E Sherman
Journal:  J Clin Oncol       Date:  2017-04-11       Impact factor: 44.544

5.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

6.  "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

Authors:  Deborah R Gordon; Barbara A Koenig
Journal:  New Genet Soc       Date:  2021-12-13

Review 7.  Views on genomic research result delivery methods and informed consent: a review.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Madeleine J Murtagh
Journal:  Per Med       Date:  2021-04-06       Impact factor: 2.512

8.  Navigating social and ethical challenges of biobanking for human microbiome research.

Authors:  Kim H Chuong; David M Hwang; D Elizabeth Tullis; Valerie J Waters; Yvonne C W Yau; David S Guttman; Kieran C O'Doherty
Journal:  BMC Med Ethics       Date:  2017-01-11       Impact factor: 2.652

9.  Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer.

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

10.  Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.

Authors:  Megan B Raymond; Kayla E Cooper; Lisa S Parker; Vence L Bonham
Journal:  Public Health Genomics       Date:  2021-07-06       Impact factor: 2.132
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