Open science precision medicine in Canada: Points to consider

被引:5
作者
Moreno, Palmira Granados [1 ]
Ali-Khan, Sarah E. [2 ]
Capps, Benjamin [3 ]
Caulfield, Timothy [4 ,5 ]
Chalaud, Damien [6 ]
Edwards, Aled [6 ,7 ]
Gold, E. Richard [2 ]
Rahimzadeh, Vasiliki [1 ]
Thorogood, Adrian [1 ]
Auld, Daniel [8 ,9 ]
Bertier, Gabrielle [1 ]
Breden, Felix [10 ]
Caron, Roxanne [1 ]
Cesar, Priscilla M. D. G. [2 ]
Cook-Deegan, Robert [11 ]
Doerr, Megan [12 ]
Duncan, Ross [13 ]
Issa, Amalia M. [1 ,14 ,15 ,16 ]
Reichman, Jerome [17 ]
Simard, Jacques [18 ]
So, Derek [1 ]
Vanamala, Sandeep [6 ]
Joly, Yann [1 ]
机构
[1] McGill Univ, Dept Human Genet, Ctr Genom & Policy, Montreal, PQ H3A 0G1, Canada
[2] McGill Univ, Ctr Intellectual Property & Policy, Fac Law, Montreal, PQ H3A 1W9, Canada
[3] Dalhousie Univ, Dept Bioeth, Fac Med, Halifax, NS B3H 4R2, Canada
[4] Univ Alberta, Hlth Law Inst, Fac Law, Edmonton, AB T6G 2H5, Canada
[5] Univ Alberta, Sch Publ Hlth, Edmonton, AB T6G 2H5, Canada
[6] McGill Univ, Montreal Neurol Inst & Hosp, Montreal, PQ H3A 2B4, Canada
[7] Univ Toronto, Struct Genom Consortium, Toronto, ON M5G 1L6, Canada
[8] McGill Univ, Montreal, PQ H3A 0G1, Canada
[9] Genome Quebec Innovat Ctr, Montreal, PQ H3A 0G1, Canada
[10] Simon Fraser Univ, Dept Biol Sci, Burnaby, BC V5A 1S6, Canada
[11] Arizona State Univ, Barrett & OConnor Washington Ctr, Sch Future Innovat Soc, Washington, DC 20006 USA
[12] Sage Bionetworks, Seattle, WA 98109 USA
[13] Publ Hlth Agcy Canada, Ottawa, ON K1A 0K9, Canada
[14] McGill Univ, Dept Family Med, Montreal, PQ H3S 1Z1, Canada
[15] Personalized Med & Targeted Therapeut, Philadelphia, PA USA
[16] Univ Sci Philadelphia, Hlth Policy & Pharmaceut Sci, Philadelphia, PA 19104 USA
[17] Duke Univ, Sch Law, Durham, NC 27708 USA
[18] Laval Univ, Ctr Hosp Univ Quebec, Genom Ctr, Quebec City, PQ G1V 4G2, Canada
来源
FACETS | 2019年 / 4卷
关键词
open science; precision medicine; Canadian health policies; open science in precision medicine; valorisation; PERSONALIZED MEDICINE; MYRIAD GENETICS; ACCESS; POLICY; INNOVATION;
D O I
10.1139/facets-2018-0034
中图分类号
O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];
学科分类号
07 ; 0710 ; 09 ;
摘要
Open science can significantly influence the development and translational process of precision medicine in Canada. Precision medicine presents a unique opportunity to improve disease prevention and healthcare, as well as to reduce health-related expenditures. However, the development of precision medicine also brings about economic challenges, such as costly development, high failure rates, and reduced market size in comparison with the traditional blockbuster drug development model. Open science, characterized by principles of open data sharing, fast dissemination of knowledge, cumulative research, and cooperation, presents a unique opportunity to address these economic challenges while also promoting the public good. The Centre of Genomics and Policy at McGill University organized a stakeholders' workshop in Montreal in March 2018. The workshop entitled "Could Open be the Yellow Brick Road to Precision Medicine?" provided a forum for stakeholders to share experiences and identify common objectives, challenges, and needs to be addressed to promote open science initiatives in precision medicine. The rich presentations and exchanges that took place during the meeting resulted in this consensus paper containing key considerations for open science precision medicine in Canada. Stakeholders would benefit from addressing these considerations as to promote a more coherent and dynamic open science ecosystem for precision medicine.
引用
收藏
页码:1 / 19
页数:19
相关论文
共 69 条
[21]  
European Commission, 2017, EV RES CAR FULL ACKN, DOI DOI 10.2777/75255
[22]  
European Commission, 2018, 2018 reform of EU data protection rules
[23]   BARBARIANS AT THE GATE: CONSUMER-DRIVEN HEALTH DATA COMMONS AND THE TRANSFORMATION OF CITIZEN SCIENCE [J].
Evans, Barbara J. .
AMERICAN JOURNAL OF LAW & MEDICINE, 2016, 42 (04) :651-685
[24]  
Gay B., 2014, Journal of Innovation and Entrepreneurship, V3, P1, DOI DOI 10.1186/2192-5372-3-2
[25]  
Ghosh S., 2015, WAKE FOREST J LAW PO, V5, P299
[26]  
Global Alliance for Genomics and Health, 2016, ACC POL
[27]   A federated ecosystem for sharing genomic, clinical data [J].
The Global Alliance for Genomics and Health .
SCIENCE, 2016, 352 (6291) :1278-1280
[28]   Accelerating Translational Research through Open Science: The Neuro Experiment [J].
Gold, E. Richard .
PLOS BIOLOGY, 2016, 14 (12)
[29]   Myriad Genetics: In the eye of the policy storm [J].
Gold, E. Richard ;
Carbone, Julia .
GENETICS IN MEDICINE, 2010, 12 (04) :S39-S70
[30]  
Government of Canada, 2018, CAN HLTH CAR SYST