Literature DB >> 18379574

From genetic privacy to open consent.

Jeantine E Lunshof1, Ruth Chadwick, Daniel B Vorhaus, George M Church.   

Abstract

Recent advances in high-throughput genomic technologies are showing concrete results in the form of an increasing number of genome-wide association studies and in the publication of comprehensive individual genome-phenome data sets. As a consequence of this flood of information the established concepts of research ethics are stretched to their limits, and issues of privacy, confidentiality and consent for research are being re-examined. Here, we show the feasibility of the co-development of scientific innovation and ethics, using the open-consent framework that was implemented in the Personal Genome Project as an example.

Mesh:

Year:  2008        PMID: 18379574     DOI: 10.1038/nrg2360

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


  138 in total

Review 1.  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

2.  Biobank governance: heterogeneous modes of ordering and democratization.

Authors:  Herbert Gottweis; Georg Lauss
Journal:  J Community Genet       Date:  2011-12-07

Review 3.  Biobanks: importance, implications and opportunities for genetic counselors.

Authors:  Alice K Hawkins
Journal:  J Genet Couns       Date:  2010-08-03       Impact factor: 2.537

4.  Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent.

Authors:  Bartha Maria Knoppers
Journal:  EMBO Rep       Date:  2010-05-07       Impact factor: 8.807

5.  Free Factories: Unified Infrastructure for Data Intensive Web Services.

Authors:  Alexander Wait Zaranek; Tom Clegg; Ward Vandewege; George M Church
Journal:  Proc USENIX Annu Tech Conf       Date:  2008-05-01

6.  Genetics and cardiovascular disease: a policy statement from the American Heart Association.

Authors:  Euan A Ashley; Ray E Hershberger; Colleen Caleshu; Patrick T Ellinor; Joe G N Garcia; David M Herrington; Carolyn Y Ho; Julie A Johnson; Steven J Kittner; Calum A Macrae; Gia Mudd-Martin; Daniel J Rader; Dan M Roden; Derek Scholes; Frank W Sellke; Jeffrey A Towbin; Jennifer Van Eyk; Bradford B Worrall
Journal:  Circulation       Date:  2012-05-29       Impact factor: 29.690

7.  Information and Communication Technologies, Genes, and Peer-Production of Knowledge to Empower Citizens' Health.

Authors:  Annibale Biggeri; Mariachiara Tallacchini
Journal:  Sci Eng Ethics       Date:  2015-11-07       Impact factor: 3.525

8.  Principle of proportionality in genomic data sharing.

Authors:  Caroline F Wright; Matthew E Hurles; Helen V Firth
Journal:  Nat Rev Genet       Date:  2015-11-23       Impact factor: 53.242

9.  Quantification of private information leakage from phenotype-genotype data: linking attacks.

Authors:  Arif Harmanci; Mark Gerstein
Journal:  Nat Methods       Date:  2016-02-01       Impact factor: 28.547

10.  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

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