Does policy grow on trees?

BMC Medical Ethics

Bartha M Knoppers¹ 

[1] Centre of Genomics and Policy, McGill University, Montreal H3A 0G1, Canada

关键词: Policy;    Human rights;    Global Alliance;    Ethics;    Data sharing;   

Others  :  1089944
DOI  :  10.1186/1472-6939-15-87

 received in 2014-08-22, accepted in 2014-12-19,  发布年份 2014

【 摘 要 】

Policymaking is both an art and a science. It is a long process of research, debate and consensus (where possible). The elaboration of the Framework for Responsible Sharing of Genomic and Health-Related Data serves as an illustration of this process.

【 授权许可】

   
2014 Knoppers; licensee BioMed Central.

【 参考文献 】

• [1]Human Genome Organisation (HUGO) Ethics Committee: Statement on Human Genomic Databases. 2002. http://www.hugo-international.org/img/genomic_2002.pdf webcite
• [2]Global Alliance for Genomics and Health: Framework for Responsible Sharing of Genomic and Health-Related Data. Global Alliance; 2014. http://genomicsandhealth.org/about-the-global-alliance/key-documents/framework-responsible-sharing-genomic-and-health-related-data webcite
• [3]Global Alliance for Genomics and Health: Mission & Founding Principles. Global Alliance; 2014. http://genomicsandhealth.org/about-global-alliance/mission-founding-principles webcite
• [4]Public Population Project in Genomics and Society (P3G) International Policy interoperability and data Access Clearinghouse (IPAC). http://www.p3g.org/ipac webcite
• [5]International Rare Diseases Research Consortium (IRDiRC): International Rare Diseases Research Consortium (IRDiRC). http://www.irdirc.org webcite
• [6]BioSHaREhttp://www.bioshare.eu webcite
• [7]H3Africahttp://www.h3africa.org webcite
• [8]International Society for Biological and Environmental Respositories (ISBER)http://www.isber.org webcite
• [9]United Nations: The Universal Declaration of Human Rights. 1948. http://www.un.org/en/documents/udhr/ webcite
• [10]Knoppers BM, Harris JR, Budin-Ljøsne I, Dove ES: A human rights approach to an international code of conduct for genomic and clinical data sharing. Hum Genet 2014, 133(7):895-903.
• [11]Bermuda Principles. 1996. http://web.ornl.gov/sci/techresources/Human_Genome/research/bermuda.shtml#1 webcite