Literature DB >> 11972159

Science and society: children and incompetent adults in genetic research: consent and safeguards.

Bartha Maria Knoppers1, Denise Avard, Geneviève Cardinal, Kathleen Cranley Glass.   

Abstract

Recent changes to the legal and ethical criteria that govern the inclusion of children and incompetent adults in genetic research are likely to lead to advances in research, but might leave the rights of the participants in this research in need of additional safeguards. Here, we discuss why this might be and propose policy considerations that could help to protect the rights of these particularly vulnerable groups of research participants.

Entities:  

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction

Mesh：

Year:  2002        PMID： 11972159     DOI： 10.1038/nrg750

Source DB:  PubMed          Journal:  Nat Rev Genet        ISSN： 1471-0056            Impact factor:   53.242


  13 in total

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Authors:  Elcke J Kranendonk; M Corrette Ploem; Raoul C M Hennekam
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Review 2.  Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries.

Authors:  Nola M Ries; Jane LeGrandeur; Timothy Caulfield
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3.  Researchers' perceptions of the ethical implications of pharmacogenomics research with children.

Authors:  D Avard; T Silverstein; G Sillon; Y Joly
Journal:  Public Health Genomics       Date:  2009-02-10       Impact factor: 2.000

4.  Voluntary participation and informed consent to international genetic research.

Authors:  Patricia A Marshall; Clement A Adebamowo; Adebowale A Adeyemo; Temidayo O Ogundiran; Mirjana Vekich; Teri Strenski; Jie Zhou; T Elaine Prewitt; Richard S Cooper; Charles N Rotimi
Journal:  Am J Public Health       Date:  2006-10-03       Impact factor: 9.308

Review 5.  Children and biobanks: a review of the ethical and legal discussion.

Authors:  Kristien Hens; Emmanuelle Lévesque; Kris Dierickx
Journal:  Hum Genet       Date:  2011-06-10       Impact factor: 4.132

Review 6.  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

7.  Clarifying assent in pediatric research.

Authors:  Noor A A Giesbertz; Annelien L Bredenoord; Johannes J M van Delden
Journal:  Eur J Hum Genet       Date:  2013-06-12       Impact factor: 4.246

8.  Stroke genetic research and adults with impaired decision-making capacity: a survey of IRB and investigator practices.

Authors:  Donna T Chen; James F Meschia; Thomas G Brott; Robert D Brown; Bradford B Worrall
Journal:  Stroke       Date:  2008-07-24       Impact factor: 7.914

Review 9.  Informed consent, genomic research and mental health: A integrative review.

Authors:  Nina Kilkku; Arja Halkoaho
Journal:  Nurs Ethics       Date:  2022-02-04       Impact factor: 3.344

10.  Public preferences regarding informed consent models for participation in population-based genomic research.

Authors:  Jodyn Platt; Juli Bollinger; Rachel Dvoskin; Sharon L R Kardia; David Kaufman
Journal:  Genet Med       Date:  2013-05-09       Impact factor: 8.822
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