Toward a roadmap in global biobanking for health

被引:104
|
作者
Harris, Jennifer R. [1 ]
Burton, Paul [2 ,3 ]
Knoppers, Bartha Maria [4 ]
Lindpaintner, Klaus [5 ,6 ]
Bledsoe, Marianna [7 ]
Brookes, Anthony J. [2 ]
Budin-Ljosne, Isabelle [1 ]
Chisholm, Rex [8 ]
Cox, David [9 ]
Deschenes, Mylene [3 ]
Fortier, Isabel [3 ,10 ]
Hainaut, Pierre [11 ]
Hewitt, Robert [12 ]
Kaye, Jane [13 ]
Litton, Jan-Eric [14 ]
Metspalu, Andres [15 ]
Ollier, Bill [16 ]
Palmer, Lyle J. [17 ,18 ]
Palotie, Aarno [19 ,20 ,21 ]
Pasterk, Markus [11 ]
Perola, Markus [22 ]
Riegman, Peter H. J. [23 ]
van Ommen, Gert-Jan [24 ,25 ]
Yuille, Martin
Zatloukal, Kurt [26 ]
机构
[1] Norwegian Inst Publ Hlth, Dept Genes & Environm, Div Epidemiol, N-0403 Oslo, Norway
[2] Univ Leicester, Leicester, Leics, England
[3] Publ Populat Project Genom P3G, Montreal, PQ, Canada
[4] McGill Univ, Ctr Genom & Policy, Montreal, PQ, Canada
[5] SDIX Inc, Newark, NJ USA
[6] Lindpaintner Biobanks Consulting, Muttenz, Switzerland
[7] US Dept Vet Affairs, Washington, DC USA
[8] Northwestern Univ, Sch Med, Ctr Genet Med, Chicago, IL USA
[9] Pfizer Inc, Biotherapeut & Bioinnovat Ctr, San Francisco, CA USA
[10] McGill Univ, Ctr Hlth, Res Inst, Montreal, PQ, Canada
[11] Int Prevent Res Inst, Lyon, France
[12] European Middle Eastern & African Soc Biopreserva, Marseille, France
[13] Univ Oxford, Dept Publ Hlth, Ctr Hlth Law & Emerging Technol, Oxford, England
[14] Karolinska Inst, Stockholm, Sweden
[15] Univ Tartu, Estonian Genome Ctr, EE-50090 Tartu, Estonia
[16] Univ Manchester, Manchester Acad Hlth Sci Ctr, Ctr Integrated Genom Med Res, Manchester, Lancs, England
[17] Ontario Inst Canc Res, Toronto, ON, Canada
[18] Mt Sinai Hosp, Samuel Lunenfeld Res Inst, Toronto, ON M5G 1X5, Canada
[19] Wellcome Trust Sanger Inst, Hinxton, S Cambs, England
[20] Univ Helsinki, Helsinki, Finland
[21] Broad Inst MIT & Harvard, Cambridge, MA USA
[22] Natl Inst Hlth & Welf, Helsinki, Finland
[23] Erasmus MC, Josephine Nefkens Inst, Dept Pathol, Rotterdam, Netherlands
[24] Leiden Univ, Med Ctr, Ctr Human & Clin Genet, Leiden, Netherlands
[25] Ctr Med Syst Biol, Leiden, Netherlands
[26] Med Univ Graz, Graz, Austria
基金
瑞典研究理事会; 英国惠康基金; 英国医学研究理事会;
关键词
DATASHAPER APPROACH; MEDICINE; GENOMICS; QUALITY; SOCIETY; SCIENCE; IMPACT; CALL;
D O I
10.1038/ejhg.2012.96
中图分类号
Q5 [生物化学]; Q7 [分子生物学];
学科分类号
071010 ; 081704 ;
摘要
Biobanks can have a pivotal role in elucidating disease etiology, translation, and advancing public health. However, meeting these challenges hinges on a critical shift in the way science is conducted and requires biobank harmonization. There is growing recognition that a common strategy is imperative to develop biobanking globally and effectively. To help guide this strategy, we articulate key principles, goals, and priorities underpinning a roadmap for global biobanking to accelerate health science, patient care, and public health. The need to manage and share very large amounts of data has driven innovations on many fronts. Although technological solutions are allowing biobanks to reach new levels of integration, increasingly powerful data-collection tools, analytical techniques, and the results they generate raise new ethical and legal issues and challenges, necessitating a reconsideration of previous policies, practices, and ethical norms. These manifold advances and the investments that support them are also fueling opportunities for biobanks to ultimately become integral parts of health-care systems in many countries. International harmonization to increase interoperability and sustainability are two strategic priorities for biobanking. Tackling these issues requires an environment favorably inclined toward scientific funding and equipped to address socio-ethical challenges. Cooperation and collaboration must extend beyond systems to enable the exchange of data and samples to strategic alliances between many organizations, including governmental bodies, funding agencies, public and private science enterprises, and other stakeholders, including patients. A common vision is required and we articulate the essential basis of such a vision herein. European Journal of Human Genetics (2012) 20, 1105-1111; doi:10.1038/ejhg. 2012.96; published online 20 June 2012
引用
收藏
页码:1105 / 1111
页数:7
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