Literature DB >> 26479554

INTRODUCTION: Return of Research Results: What About the Family?

Susan M Wolf1.   

Abstract

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Year:  2015        PMID： 26479554      PMCID： PMC4618495          DOI： 10.1111/jlme.12287

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


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  10 in total

1.  Anticipate and communicate: Ethical management of incidental and secondary findings in the clinical, research, and direct-to-consumer contexts (December 2013 report of the Presidential Commission for the Study of Bioethical Issues).

Authors:  Christine Weiner
Journal:  Am J Epidemiol       Date:  2014-08-22       Impact factor: 4.897

Review 2.  Empirical analysis of current approaches to incidental findings.

Authors:  Frances Lawrenz; Suzanne Sobotka
Journal:  J Law Med Ethics       Date:  2008       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.  Communication of clinically useful next-generation sequencing results to at-risk relatives of deceased research participants: toward active disclosure?

Authors:  Linda Battistuzzi; Rosagemma Ciliberti; William Bruno; Daniela Turchetti; Liliana Varesco; Francesco De Stefano
Journal:  J Clin Oncol       Date:  2013-10-07       Impact factor: 44.544

5.  Genomic inheritances: disclosing individual research results from whole-exome sequencing to deceased participants' relatives.

Authors:  Ben Chan; Flavia M Facio; Haley Eidem; Sara Chandros Hull; Leslie G Biesecker; Benjamin E Berkman
Journal:  Am J Bioeth       Date:  2012       Impact factor: 11.229

6.  The return of results of deceased research participants.

Authors:  Anne Marie Tassé
Journal:  J Law Med Ethics       Date:  2011       Impact factor: 1.718

7.  Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.

Authors:  Richard R Fabsitz; Amy McGuire; Richard R Sharp; Mona Puggal; Laura M Beskow; Leslie G Biesecker; Ebony Bookman; Wylie Burke; Esteban Gonzalez Burchard; George Church; Ellen Wright Clayton; John H Eckfeldt; Conrad V Fernandez; Rebecca Fisher; Stephanie M Fullerton; Stacey Gabriel; Francine Gachupin; Cynthia James; Gail P Jarvik; Rick Kittles; Jennifer R Leib; Christopher O'Donnell; P Pearl O'Rourke; Laura Lyman Rodriguez; Sheri D Schully; Alan R Shuldiner; Rebecca K F Sze; Joseph V Thakuria; Susan M Wolf; Gregory L Burke
Journal:  Circ Cardiovasc Genet       Date:  2010-12

Review 8.  Ethical, legal, and counseling challenges surrounding the return of genetic results in oncology.

Authors:  Martijn P Lolkema; Christa G Gadellaa-van Hooijdonk; Annelien L Bredenoord; Peter Kapitein; Nancy Roach; Edwin Cuppen; Nine V Knoers; Emile E Voest
Journal:  J Clin Oncol       Date:  2013-04-15       Impact factor: 44.544

Review 9.  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

10.  Managing incidental findings and research results in genomic research involving biobanks and archived data sets.

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
  10 in total
  2 in total

1.  "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

2.  Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.

Authors:  Robert C Green; Katrina A B Goddard; Gail P Jarvik; Laura M Amendola; Paul S Appelbaum; Jonathan S Berg; Barbara A Bernhardt; Leslie G Biesecker; Sawona Biswas; Carrie L Blout; Kevin M Bowling; Kyle B Brothers; Wylie Burke; Charlisse F Caga-Anan; Arul M Chinnaiyan; Wendy K Chung; Ellen W Clayton; Gregory M Cooper; Kelly East; James P Evans; Stephanie M Fullerton; Levi A Garraway; Jeremy R Garrett; Stacy W Gray; Gail E Henderson; Lucia A Hindorff; Ingrid A Holm; Michelle Huckaby Lewis; Carolyn M Hutter; Pasi A Janne; Steven Joffe; David Kaufman; Bartha M Knoppers; Barbara A Koenig; Ian D Krantz; Teri A Manolio; Laurence McCullough; Jean McEwen; Amy McGuire; Donna Muzny; Richard M Myers; Deborah A Nickerson; Jeffrey Ou; Donald W Parsons; Gloria M Petersen; Sharon E Plon; Heidi L Rehm; J Scott Roberts; Dan Robinson; Joseph S Salama; Sarah Scollon; Richard R Sharp; Brian Shirts; Nancy B Spinner; Holly K Tabor; Peter Tarczy-Hornoch; David L Veenstra; Nikhil Wagle; Karen Weck; Benjamin S Wilfond; Kirk Wilhelmsen; Susan M Wolf; Julia Wynn; Joon-Ho Yu
Journal:  Am J Hum Genet       Date:  2016-05-12       Impact factor: 11.025
  2 in total

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