Literature DB >> 20477535

Informed consent in genomics and genetic research.

Amy L McGuire1, Laura M Beskow.   

Abstract

There are several features of genetic and genomic research that challenge established norms of informed consent. In this paper, we discuss these challenges, explore specific elements of informed consent for genetic and genomic research conducted in the United States, and consider alternative consent models that have been proposed. All of these models attempt to balance the obligation to respect and protect research participants with the larger social interest in advancing beneficial research as quickly as possible.

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Year:  2010        PMID: 20477535      PMCID: PMC3216676          DOI: 10.1146/annurev-genom-082509-141711

Source DB:  PubMed          Journal:  Annu Rev Genomics Hum Genet        ISSN: 1527-8204            Impact factor:   8.929


  78 in total

1.  Human genetic banking: altruism, benefit and consent.

Authors:  Garrath Williams; Doris Schroeder
Journal:  New Genet Soc       Date:  2004-04

2.  Balancing privacy protections with efficient research: institutional review boards and the use of certificates of confidentiality.

Authors:  Peter M Currie
Journal:  IRB       Date:  2005 Sep-Oct

3.  Public expectations for return of results--time to stop being paternalistic?

Authors:  Conrad Fernandez
Journal:  Am J Bioeth       Date:  2008-11       Impact factor: 11.229

4.  The Genetic Information Nondiscrimination Act: fear factor or fantasy island?

Authors:  Benjamin S Wilfond
Journal:  Hastings Cent Rep       Date:  2008 Nov-Dec       Impact factor: 2.683

5.  Personal genomes: when consent gets in the way.

Authors:  Patrick Taylor
Journal:  Nature       Date:  2008-11-06       Impact factor: 49.962

6.  Informed consent for population-based research involving genetics.

Authors:  L M Beskow; W Burke; J F Merz; P A Barr; S Terry; V B Penchaszadeh; L O Gostin; M Gwinn; M J Khoury
Journal:  JAMA       Date:  2001-11-14       Impact factor: 56.272

7.  Problematic variation in local institutional review of a multicenter genetic epidemiology study.

Authors:  Rita McWilliams; Julie Hoover-Fong; Ada Hamosh; Suzanne Beck; Terri Beaty; Garry Cutting
Journal:  JAMA       Date:  2003-07-16       Impact factor: 56.272

8.  How do institutional review boards apply the federal risk and benefit standards for pediatric research?

Authors:  Seema Shah; Amy Whittle; Benjamin Wilfond; Gary Gensler; David Wendler
Journal:  JAMA       Date:  2004-01-28       Impact factor: 56.272

9.  Research ethics. Certificates of confidentiality and compelled disclosure of data.

Authors:  Laura M Beskow; Lauren Dame; E Jane Costello
Journal:  Science       Date:  2008-11-14       Impact factor: 47.728

10.  Identifiability of DNA data: the need for consistent federal policy.

Authors:  Amy L McGuire
Journal:  Am J Bioeth       Date:  2008-10       Impact factor: 11.229

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  74 in total

1.  Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach.

Authors:  Menno Mostert; Annelien L Bredenoord; Monique C I H Biesaart; Johannes J M van Delden
Journal:  Eur J Hum Genet       Date:  2015-11-11       Impact factor: 4.246

2.  Demographic differences in willingness to provide broad and narrow consent for biobank research.

Authors:  Altovise T Ewing; Lori A H Erby; Juli Bollinger; Eva Tetteyfio; Luisel J Ricks-Santi; David Kaufman
Journal:  Biopreserv Biobank       Date:  2015-03-31       Impact factor: 2.300

3.  Recruiting for diversity: a pilot test of recruitment strategies for a national alcohol survey with mail-in genetic data collection.

Authors:  Karen G Chartier; Priscilla Martinez; Cory Cummings; Brien P Riley; Katherine J Karriker-Jaffe
Journal:  J Community Genet       Date:  2021-01-04

4.  Informed consent form challenges for genetic research in a developing Arab country with high risk for genetic disease.

Authors:  Satish Chandrasekhar Nair; Halah Ibrahim
Journal:  J Genet Couns       Date:  2014-09-18       Impact factor: 2.537

5.  The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.

Authors:  Gail E Henderson; Susan M Wolf; Kristine J Kuczynski; Steven Joffe; Richard R Sharp; D Williams Parsons; Bartha M Knoppers; Joon-Ho Yu; Paul S Appelbaum
Journal:  J Law Med Ethics       Date:  2014       Impact factor: 1.718

6.  Informed consent for exome sequencing research in families with genetic disease: the emerging issue of incidental findings.

Authors:  Amanda L Bergner; Juli Bollinger; Karen S Raraigh; Crystal Tichnell; Brittney Murray; Carrie Lynn Blout; Aida Bytyci Telegrafi; Cynthia A James
Journal:  Am J Med Genet A       Date:  2014-09-22       Impact factor: 2.802

7.  'Cool! and creepy': engaging with college student stakeholders in Michigan's biobank.

Authors:  Tevah Platt; Jodyn Platt; Daniel B Thiel; Nicole Fisher; Sharon L R Kardia
Journal:  J Community Genet       Date:  2014-06-12

8.  Health Research with Big Data: Time for Systemic Oversight.

Authors:  Effy Vayena; Alessandro Blasimme
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

9.  Understanding participation by African Americans in cancer genetics research.

Authors:  Jasmine A McDonald; Frances K Barg; Benita Weathers; Carmen E Guerra; Andrea B Troxel; Susan Domchek; Deborah Bowen; Judy A Shea; Chanita Hughes Halbert
Journal:  J Natl Med Assoc       Date:  2012 Jul-Aug       Impact factor: 1.798

Review 10.  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

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