Literature DB >> 16710548

Data sharing and intellectual property in a genomic epidemiology network: policies for large-scale research collaboration.

Dave A Chokshi1, Michael Parker, Dominic P Kwiatkowski.   

Abstract

Genomic epidemiology is a field of research that seeks to improve the prevention and management of common diseases through an understanding of their molecular origins. It involves studying thousands of individuals, often from different populations, with exacting techniques. The scale and complexity of such research has required the formation of research consortia. Members of these consortia need to agree on policies for managing shared resources and handling genetic data. Here we consider data-sharing and intellectual property policies for an international research consortium working on the genomic epidemiology of malaria. We outline specific guidelines governing how samples and data are transferred among its members; how results are released into the public domain; when to seek protection for intellectual property; and how intellectual property should be managed. We outline some pragmatic solutions founded on the basic principles of promoting innovation and access.

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Year:  2006        PMID: 16710548      PMCID: PMC2627357          DOI: 10.2471/blt.06.029843

Source DB:  PubMed          Journal:  Bull World Health Organ        ISSN: 0042-9686            Impact factor:   9.408


  20 in total

1.  Establishing a multicentre clinical research network: lessons learned.

Authors:  N A Hagen; C R Stiles; P D Biondo; G G Cummings; R L Fainsinger; D E Moulin; J L Pereira; R Spice
Journal:  Curr Oncol       Date:  2011-10       Impact factor: 3.677

Review 2.  Domain-specific data sharing in neuroscience: what do we have to learn from each other?

Authors:  John Darrell Van Horn; Catherine A Ball
Journal:  Neuroinformatics       Date:  2008-05-13

3.  The International Serious Adverse Events Consortium's data sharing model.

Authors:  Jorge L Contreras; Aris Floratos; Arthur L Holden
Journal:  Nat Biotechnol       Date:  2013-01       Impact factor: 54.908

4.  Does science need bioethicists? Ethics and science collaboration in biomedical research.

Authors:  Angeliki Kerasidou; Michael Parker
Journal:  Res Ethics       Date:  2014-12-01

5.  Full Molecular Typing of Neisseria meningitidis Directly from Clinical Specimens for Outbreak Investigation.

Authors:  Mark Itsko; Adam C Retchless; Sandeep J Joseph; Abigail Norris Turner; Jose A Bazan; Adodo Yao Sadji; Rasmata Ouédraogo-Traoré; Xin Wang
Journal:  J Clin Microbiol       Date:  2020-11-18       Impact factor: 5.948

6.  Intra-consortium data sharing in multi-national, multi-institutional genomic studies: gaps and guidance.

Authors:  Jerome Amir Singh; Abdallah S Daar
Journal:  Hugo J       Date:  2009-11-14

7.  Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.

Authors:  Vicki M Marsh; Dorcas M Kamuya; Albert M Mlamba; Thomas N Williams; Sassy S Molyneux
Journal:  BMC Med Ethics       Date:  2010-07-15       Impact factor: 2.652

8.  Ethical data release in genome-wide association studies in developing countries.

Authors:  Michael Parker; Susan J Bull; Jantina de Vries; Tsiri Agbenyega; Ogobara K Doumbo; Dominic P Kwiatkowski
Journal:  PLoS Med       Date:  2009-11-24       Impact factor: 11.069

Review 9.  Methodological challenges of genome-wide association analysis in Africa.

Authors:  Yik-Ying Teo; Kerrin S Small; Dominic P Kwiatkowski
Journal:  Nat Rev Genet       Date:  2010-02       Impact factor: 53.242

10.  A global network for investigating the genomic epidemiology of malaria.

Authors: 
Journal:  Nature       Date:  2008-12-11       Impact factor: 49.962

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