Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance

被引：21

作者：

Cook-Deegan, Robert ^{[1
]}

Ankeny, Rachel A. ^{[2
]}

Jones, Kathryn Maxson ^{[3
]}

机构：

[1] Arizona State Univ, Sch Future Innovat Soc, Washington, DC 20009 USA

[2] Univ Adelaide, Sch Human, Adelaide, SA 5005, Australia

[3] Princeton Univ, Dept Hist, Program Hist Sci, Princeton, NJ 08544 USA

来源：

ANNUAL REVIEW OF GENOMICS AND HUMAN GENETICS, VOL 18 | 2017年 / 18卷

基金：

美国国家卫生研究院; 英国惠康基金;

关键词：

patents; data sharing; sociology of science; model organisms; knowledge commons; science policy; HUMAN-GENOME-PROJECT; EXPRESSED SEQUENCE TAGS; PROTEOMICS DATA RELEASE; INTERNATIONAL SUMMIT; SNP CONSORTIUM; PRIVACY; POLICY; BRCA; HISTORY; ACCESS;

D O I：

10.1146/annurev-genom-083115-022515

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

The Human Genome Project modeled its open science ethos on nematode biology, most famously through daily release of DNA sequence data based on the 1996 Bermuda Principles. That open science philosophy persists, but daily, unfettered release of data has had to adapt to constraints occasioned by the use of data from individual people, broader use of data not only by scientists but also by clinicians and individuals, the global reach of genomic applications and diverse national privacy and research ethics laws, and the rising prominence of a diverse commercial genomics sector. The Global Alliance for Genomics and Health was established to enable the data sharing that is essential for making meaning of genomic variation. Data-sharing policies and practices will continue to evolve as researchers, health professionals, and individuals strive to construct a global medical and scientific information commons.

引用

页码：389 / 415

页数：27

共 177 条

[81] Development of the clinical next-generation sequencing industry in a shifting policy climate [J].

Curnutte, Margaret A. ;

Frumovitz, Karen L. ;

Bollinger, Juli M. ;

McGuire, Amy L. ;

Kaufman, David J. .

NATURE BIOTECHNOLOGY, 2014, 32 (10) :980-982

[82]

de Chadarevian Soraya., 2002, Designs for Life: Molecular Biology after World War II

[83] Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework [J].

Dove, Edward S. .

JOURNAL OF LAW MEDICINE & ETHICS, 2015, 43 (04) :675-689

[84] A comprehensive laboratory-based program for classification of variants of uncertain significance in hereditary cancer genes [J].

Eggington, J. M. ;

Bowles, K. R. ;

Moyes, K. ;

Manley, S. ;

Esterling, L. ;

Sizemore, S. ;

Rosenthal, E. ;

Theisen, A. ;

Saam, J. ;

Arnell, C. ;

Pruss, D. ;

Bennett, J. ;

Burbidge, L. A. ;

Roa, B. ;

Wenstrup, R. J. .

CLINICAL GENETICS, 2014, 86 (03) :229-237

[85] Patents and data-sharing in public science [J].

Eisenberg, Rebecca S. .

INDUSTRIAL AND CORPORATE CHANGE, 2006, 15 (06) :1013-1031

[86]

Eisenberg Rebecca S, 1990, Emory Law J, V39, P721

[87]

Eisenberg RebeccaS., 1995, AIPLA Q. J, V23, P1

[88] Intellectual property issues in genomics [J].

Eisenberg, RS .

TRENDS IN BIOTECHNOLOGY, 1996, 14 (08) :302-307

[89] The ENCODE (ENCyclopedia of DNA elements) Project [J].

Feingold, EA ;

Good, PJ ;

Guyer, MS ;

Kamholz, S ;

Liefer, L ;

Wetterstrand, K ;

Collins, FS ;

Gingeras, TR ;

Kampa, D ;

Sekinger, EA ;

Cheng, J ;

Hirsch, H ;

Ghosh, S ;

Zhu, Z ;

Pate, S ;

Piccolboni, A ;

Yang, A ;

Tammana, H ;

Bekiranov, S ;

Kapranov, P ;

Harrison, R ;

Church, G ;

Struhl, K ;

Ren, B ;

Kim, TH ;

Barrera, LO ;

Qu, C ;

Van Calcar, S ;

Luna, R ;

Glass, CK ;

Rosenfeld, MG ;

Guigo, R ;

Antonarakis, SE ;

Birney, E ;

Brent, M ;

Pachter, L ;

Reymond, A ;

Dermitzakis, ET ;

Dewey, C ;

Keefe, D ;

Denoeud, F ;

Lagarde, J ;

Ashurst, J ;

Hubbard, T ;

Wesselink, JJ ;

Castelo, R ;

Eyras, E ;

Myers, RM ;

Sidow, A ;

Batzoglou, S .

SCIENCE, 2004, 306 (5696) :636-640

[90]

GarciaSancho M, 2012, SCI TECHNOL MED MOD, P1, DOI 10.1057/9780230370937

← 4 5 6 7 8 9 10 11 12 13 →