Literature DB >> 24371432

The Informed Cohort Oversight Board: From Values to Architecture.

Ingrid A Holm1, Patrick L Taylor2.   

Abstract

Entities:  

Year:  2012        PMID: 24371432      PMCID: PMC3872117     

Source DB:  PubMed          Journal:  Minn J Law Sci Technol        ISSN: 1552-9533


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  14 in total

Review 1.  Evaluation of the validity and utility of genetic testing for rare diseases.

Authors:  Scott D Grosse; Lisa Kalman; Muin J Khoury
Journal:  Adv Exp Med Biol       Date:  2010       Impact factor: 2.622

2.  Disclosing individual genetic results to research participants.

Authors:  Vardit Ravitsky; Benjamin S Wilfond
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

3.  Tiered disclosure options promote the autonomy and well-being of research subjects.

Authors:  Mark A Rothstein
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

4.  Undesirable implications of disclosing individual genetic results to research participants.

Authors:  Leslie A Meltzer
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

5.  Multidimensional results reporting to participants in genomic studies: getting it right.

Authors:  Isaac S Kohane; Patrick L Taylor
Journal:  Sci Transl Med       Date:  2010-06-23       Impact factor: 17.956

6.  Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.

Authors:  Ebony B Bookman; Aleisha A Langehorne; John H Eckfeldt; Kathleen C Glass; Gail P Jarvik; Michael Klag; Greg Koski; Arno Motulsky; Benjamin Wilfond; Teri A Manolio; Richard R Fabsitz; Russell V Luepker
Journal:  Am J Med Genet A       Date:  2006-05-15       Impact factor: 2.802

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

8.  Biobanking in pediatrics: the human nonsubjects approach.

Authors:  Kyle Bertram Brothers
Journal:  Per Med       Date:  2011-01       Impact factor: 2.512

9.  Evaluating the utility of personal genomic information.

Authors:  Morris W Foster; John J Mulvihill; Richard R Sharp
Journal:  Genet Med       Date:  2009-08       Impact factor: 8.822

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

Authors:  Erin D Harris; Sonja I Ziniel; Jonathan G Amatruda; Catherine M Clinton; Sarah K Savage; Patrick L Taylor; Noelle L Huntington; Robert C Green; Ingrid A Holm
Journal:  Genet Med       Date:  2012-01-26       Impact factor: 8.822

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  11 in total

Review 1.  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

2.  Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.

Authors:  Kurt D Christensen; Sarah K Savage; Noelle L Huntington; Elissa R Weitzman; Sonja I Ziniel; Phoebe L Bacon; Cara N Cacioppo; Robert C Green; Ingrid A Holm
Journal:  J Empir Res Hum Res Ethics       Date:  2017-04       Impact factor: 1.742

3.  Pediatric data sharing in genomic research: attitudes and preferences of parents.

Authors:  Matthew D Burstein; Jill Oliver Robinson; Susan G Hilsenbeck; Amy L McGuire; Ching C Lau
Journal:  Pediatrics       Date:  2014-03-10       Impact factor: 7.124

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

Authors:  Ingrid A Holm; Brittany R Iles; Sonja I Ziniel; Phoebe L Bacon; Sarah K Savage; Kurt D Christensen; Elissa R Weitzman; Robert C Green; Noelle L Huntington
Journal:  J Empir Res Hum Res Ethics       Date:  2015-10       Impact factor: 1.742

5.  A framework for analyzing the ethics of disclosing genetic research findings.

Authors:  Lisa Eckstein; Jeremy R Garrett; Benjamin E Berkman
Journal:  J Law Med Ethics       Date:  2014       Impact factor: 1.718

6.  The First Amendment Right to Speak About the Human Genome.

Authors:  Barbara J Evans
Journal:  Univ Pa J Const Law       Date:  2014-02-01

7.  Models of consent to return of incidental findings in genomic research.

Authors:  Paul S Appelbaum; Erik Parens; Cameron R Waldman; Robert Klitzman; Abby Fyer; Josue Martinez; W Nicholson Price; Wendy K Chung
Journal:  Hastings Cent Rep       Date:  2014-06-11       Impact factor: 2.683

8.  THE GENETIC INFORMATION NONDISCRIMINATION ACT AT AGE 10: GINA'S CONTROVERSIAL ASSERTION THAT DATA TRANSPARENCY PROTECTS PRIVACY AND CIVIL RIGHTS.

Authors:  Barbara J Evans
Journal:  William Mary Law Rev       Date:  2019

9.  Self-guided management of exome and whole-genome sequencing results: changing the results return model.

Authors:  Joon-Ho Yu; Seema M Jamal; Holly K Tabor; Michael J Bamshad
Journal:  Genet Med       Date:  2013-04-25       Impact factor: 8.822

10.  A FAUSTIAN BARGAIN THAT UNDERMINES RESEARCH PARTICIPANTS' PRIVACY RIGHTS AND RETURN OF RESULTS.

Authors:  Barbara J Evans; Susan M Wolf
Journal:  Fla Law Rev       Date:  2019-09
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