Data sharing UPDATE | June 30 - July 7, 2016 | Public Health Genomics Knowledge Base (v1.0)

Public Health Genomics Knowledge Base (v1.0)



June 30 - July 7, 2016 


Last Updated: Jun 30, 2016

• Data Sharing and Inductive Learning — Toward Healthy Birth, Growth, and Development
  N. L'ntshotsholé Jumbe, et al, NEJM, June 23, 2016
• The ups and downs of data sharing in science
  Nature editorial, June 21, 2016
• Knowing who to trust: exploring the role of 'ethical metadata' in mediating risk of harm in collaborative genomics research in Africa.
  de Vries Jantina et al. BMC medical ethics 2014 1562
• Survey Launch on Public Attitudes Toward Genomic Data Sharing
  A Proffit, Bio IT World, June 2016
• A federated ecosystem for sharing genomic, clinical data
  Global Alliance for Genomics and Health, Science, June 8, 2016
• Sharing genomic, clinical data
  EMBL-EBI, June 2016
• Global Alliance for Genomics & Health Argues for Federated Data Ecosystem
  BioIT World, June 9, 2016
• PLOS Genetics Data Sharing Policy: In Pursuit of Functional Utility.
  Barsh Gregory S et al. PLoS genetics 2015 Dec 11(12) e1005716
• U.S. project launched to promote data sharing by cancer researchers
  Reuters, June 6, 2016
• Newly launched Genomic Data Commons to facilitate data and clinical information sharing
  NCI, June 6, 2016
• Why an integrated network of genomic and clinical information on cancer is essential
  Dog Lowy, NCI director, The Medium, June, 2016
• After a prominent gene-testing firm declined to give patients their complete data, ACLU filed a legal complaint
  J Couzin-Frankel, Science Magazine, May 19, 2016
• Ethical considerations in biobanks: how a public health ethics perspective sheds new light on old controversies.
  Virani Alice Hawkins et al. Journal of genetic counseling 2015 Jun 24(3) 428-32
• Patient and interest organizations' views on personalized medicine: a qualitative study.
  Budin-Ljøsne Isabelle et al. BMC medical ethics 2016 17(1) 28
• Facilitating a culture of responsible and effective sharing of cancer genome data.
  Siu Lillian L et al. Nature medicine 2016 May 22(5) 464-471

• Human (27)
• Pathogen (1)

• Human (3)
• Pathogen (0)

• Human (14)
• Pathogen (0)

• Guidelines (2)
• Tier Table (0)
• Synthesis (4)

• Implementation (2)

Relevant Resources

• Cancer Genomics and Epidemiology Navigator (CGEN)
• Genetics and Genomics Competencies Center (G2C2)
• NIH Genetic Testing Registry
• NIH MedGen Database
• Online Mendelian Inheritance in Man (OMIM)
• PharmGKB