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Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?

Autor: Mitchell PB; 1 Johns Hopkins University, Baltimore, MD, USA., Ziniel SI; 2 Center for Patient Safety and Quality Research, Boston, MA, USA.; 3 University of Colorado, Aurora, USA.; 4 Children's Hospital Colorado, Aurora, USA., Savage SK; 5 Facial Dysmorphology Analysis, Inc., Boston, MA, USA., Christensen KD; 6 Harvard University, Boston, MA, USA., Weitzman ER; 6 Harvard University, Boston, MA, USA.; 7 Boston Children's Hospital, MA, USA., Green RC; 6 Harvard University, Boston, MA, USA.; 8 Brigham and Women's Hospital, Boston, MA, USA., Huntington NL; 6 Harvard University, Boston, MA, USA.; 7 Boston Children's Hospital, MA, USA., Mathews DJ; 1 Johns Hopkins University, Baltimore, MD, USA., Holm IA; 6 Harvard University, Boston, MA, USA.; 7 Boston Children's Hospital, MA, USA.

Publikováno v: Journal of empirical research on human research ethics : JERHRE [J Empir Res Hum Res Ethics] 2018 Apr; Vol. 13 (2), pp. 125-138. Date of Electronic Publication: 2018 Feb 23.

Family health history reporting is sensitive to small changes in wording.

Autor: Conway-Pearson LS; Northwestern University, Evanston, Illinois, USA., Christensen KD; Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.; Department of Medicine, Harvard Medical School, Boston, Massachusetts, USA., Savage SK; Division of Genetics and Genomics, Boston Children's Hospital, Boston, Massachusetts, USA., Huntington NL; Division of Developmental Medicine, Boston Children's Hospital, Boston, Massachusetts, USA.; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA., Weitzman ER; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.; Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, Boston, Massachusetts, USA.; Children's Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Boston Children's Hospital, Boston, Massachusetts, USA., Ziniel SI; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.; Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, Boston, Massachusetts, USA.; Center for Patient Safety and Quality Research, Boston Children's Hospital, Boston, Massachusetts, USA., Bacon P; Johns Hopkins University School of Medicine, Baltimore, Maryland, USA., Cacioppo CN; Division of Genetics and Genomics, Boston Children's Hospital, Boston, Massachusetts, USA., Green RC; Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.; Department of Medicine, Harvard Medical School, Boston, Massachusetts, USA.; Partners Personalized Medicine, Boston, Massachusetts, USA., Holm IA; Division of Genetics and Genomics, Boston Children's Hospital, Boston, Massachusetts, USA.; Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.; Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, Massachusetts, USA.

Publikováno v: Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2016 Dec; Vol. 18 (12), pp. 1308-1311. Date of Electronic Publication: 2016 May 05.

Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research.

Autor: Holm IA; Boston Children's Hospital, MA, USA Harvard Medical School, Boston, MA, USA ingrid.holm@childrens.harvard.edu., Iles BR; McLean Hospital, Belmont, MA, USA., Ziniel SI; Boston Children's Hospital, MA, USA Harvard Medical School, Boston, MA, USA., Bacon PL; Johns Hopkins University School of Medicine, Baltimore, MD, USA., Savage SK; Boston Children's Hospital, MA, USA., Christensen KD; Harvard Medical School, Boston, MA, USA., Weitzman ER; Boston Children's Hospital, MA, USA Harvard Medical School, Boston, MA, USA., Green RC; Harvard Medical School, Boston, MA, USA Partners Personalized Medicine, Boston, MA, USA., Huntington NL; Boston Children's Hospital, MA, USA Harvard Medical School, Boston, MA, USA.

Publikováno v: Journal of empirical research on human research ethics : JERHRE [J Empir Res Hum Res Ethics] 2015 Oct; Vol. 10 (4), pp. 414-26.

The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository.

Autor: Harris ED; Department of Medicine, Division of Genetics and Program in Genomics, Children's Hospital Boston, Boston, Massachusetts, USA. Erin.harris@childrens.harvard.edu, Ziniel SI, Amatruda JG, Clinton CM, Savage SK, Taylor PL, Huntington NL, Green RC, Holm IA

Publikováno v: Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2012 Mar; Vol. 14 (3), pp. 330-7. Date of Electronic Publication: 2012 Jan 26.