Literature DB >> 21252333

Research ethics. Research practice and participant preferences: the growing gulf.

S B Trinidad1, S M Fullerton, E J Ludman, G P Jarvik, E B Larson, W Burke.   

Abstract

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Year:  2011        PMID： 21252333      PMCID： PMC3044500          DOI： 10.1126/science.1199000

Source DB:  PubMed          Journal:  Science        ISSN： 0036-8075            Impact factor:   47.728


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  17 in total

1.  Building a community-based participatory research center to investigate obesity and diabetes in Alaska Natives.

Authors:  Bert B Boyer; Gerald V Mohatt; Cecile Lardon; Rosemarie Plaetke; Bret R Luick; Scarlett H Hutchison; Gabriela Antunez de Mayolo; Elizabeth Ruppert; Andrea Bersamin
Journal:  Int J Circumpolar Health       Date:  2005-06       Impact factor: 1.228

2.  Medicine. Reestablishing the researcher-patient compact.

Authors:  Isaac S Kohane; Kenneth D Mandl; Patrick L Taylor; Ingrid A Holm; Daniel J Nigrin; Louis M Kunkel
Journal:  Science       Date:  2007-05-11       Impact factor: 47.728

3.  Informed consent in biobank research: a deliberative approach to the debate.

Authors:  David M Secko; Nina Preto; Simon Niemeyer; Michael M Burgess
Journal:  Soc Sci Med       Date:  2008-12-16       Impact factor: 4.634

4.  Transforming the culture of biomedical research from compliance to trustworthiness: insights from nonmedical sectors.

Authors:  Mark Yarborough; Kelly Fryer-Edwards; Gail Geller; Richard R Sharp
Journal:  Acad Med       Date:  2009-04       Impact factor: 6.893

5.  Dementia and Alzheimer disease incidence: a prospective cohort study.

Authors:  Walter A Kukull; Roger Higdon; James D Bowen; Wayne C McCormick; Linda Teri; Gerard D Schellenberg; Gerald van Belle; Lance Jolley; Eric B Larson
Journal:  Arch Neurol       Date:  2002-11

6.  Meeting the governance challenges of next-generation biorepository research.

Authors:  Stephanie M Fullerton; Nicholas R Anderson; Greg Guzauskas; Dena Freeman; Kelly Fryer-Edwards
Journal:  Sci Transl Med       Date:  2010-01-20       Impact factor: 17.956

7.  Attitudes and perceptions of patients towards methods of establishing a DNA biobank.

Authors:  Jill M Pulley; Margaret M Brace; Gordon R Bernard; Dan R Masys
Journal:  Cell Tissue Bank       Date:  2007-10-25       Impact factor: 1.522

8.  Research on stored biological samples: views of African American and White American cancer patients.

Authors:  Rebecca D Pentz; Laurent Billot; David Wendler
Journal:  Am J Med Genet A       Date:  2006-04-01       Impact factor: 2.802

9.  Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project.

Authors:  Catherine A McCarty; Donna Chapman-Stone; Teresa Derfus; Philip F Giampietro; Norman Fost
Journal:  Am J Med Genet A       Date:  2008-12-01       Impact factor: 2.802

10.  Subjects matter: a survey of public opinions about a large genetic cohort study.

Authors:  David Kaufman; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Genet Med       Date:  2008-11       Impact factor: 8.822
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  53 in total

1.  Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience.

Authors:  Amy L McGuire; Melissa Basford; Lynn G Dressler; Stephanie M Fullerton; Barbara A Koenig; Rongling Li; Cathy A McCarty; Erin Ramos; Maureen E Smith; Carol P Somkin; Carol Waudby; Wendy A Wolf; Ellen Wright Clayton
Journal:  Genome Res       Date:  2011-06-01       Impact factor: 9.043

Review 2.  The tension between data sharing and the protection of privacy in genomics research.

Authors:  Jane Kaye
Journal:  Annu Rev Genomics Hum Genet       Date:  2012-03-09       Impact factor: 8.929

3.  The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.

Authors:  R Jean Cadigan; Marsha Michie; Gail Henderson; Arlene M Davis; Laura M Beskow
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

4.  Newborn screening education on the internet: a content analysis of North American newborn screening program websites.

Authors:  Makda H Araia; Beth K Potter
Journal:  J Community Genet       Date:  2011-04-15

5.  Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.

Authors:  Bradley D Freeman; Carie R Kennedy; Dragana Bolcic-Jankovic; Alexander Eastman; Ellen Iverson; Erica Shehane; Aaron Celious; Jennifer Barillas; Brian Clarridge
Journal:  J Empir Res Hum Res Ethics       Date:  2012-02       Impact factor: 1.742

6.  Parental Views on Expanded Newborn Screening Using Whole-Genome Sequencing.

Authors:  Galen Joseph; Flavia Chen; Julie Harris-Wai; Jennifer M Puck; Charlotte Young; Barbara A Koenig
Journal:  Pediatrics       Date:  2016-01       Impact factor: 7.124

7.  Data linkages between patient-powered research networks and health plans: a foundation for collaborative research.

Authors:  Abiy Agiro; Xiaoxue Chen; Biruk Eshete; Rebecca Sutphen; Elizabeth Bourquardez Clark; Cristina M Burroughs; W Benjamin Nowell; Jeffrey R Curtis; Sara Loud; Robert McBurney; Peter A Merkel; Antoine G Sreih; Kalen Young; Kevin Haynes
Journal:  J Am Med Inform Assoc       Date:  2019-07-01       Impact factor: 4.497

Review 8.  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

Review 9.  Evolving approaches to the ethical management of genomic data.

Authors:  Jean E McEwen; Joy T Boyer; Kathie Y Sun
Journal:  Trends Genet       Date:  2013-02-28       Impact factor: 11.639

10.  Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?

Authors:  Susan Brown Trinidad; Stephanie M Fullerton; Julie M Bares; Gail P Jarvik; Eric B Larson; Wylie Burke
Journal:  AJOB Prim Res       Date:  2012-06-19
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