When the recent statement of the International Consortium of Investigators for Fairness in Trial Data Sharing was published in NEJM I wrote this letter to the journal. It was rejected. No worries I can share it here.
The word limit for a letter to NEJM is 175. Where I had referenced a document in the letter I have linked to the original document here.
Let me know what you think.
Data sharing in Clinical Trials and Genomics: similarities and differences
Experiments using genomic technologies require similar financial and infrastructural investments to clinical trials. Therefore, comparing the recommendations of the International Consortium of Investigators for Fairness in Trial Data Sharing and pervasive attitudes in genomics may be instructive.
Firstly, the consortium suggests between 2 and 5 years prior to trial data release. This contrasts with the NIH genomic data sharing policy, which advises that genomic data should be submitted to repositories 3 to 6 months after generation.
Secondly, the consortium’s concerns regarding repeatability and reproducibility of analysis have been robustly addressed in genomics through the use of open source integrated analysis frameworks and version control systems.
Finally, the consortium suggests financial compensation for access to data. The recent analysis of protein-coding genetic variation in 60,706 humans used raw data from 14 separate, unconnected consortia to generate an unprecedented catalogue of human genetic diversity without financial transaction.
The gap between these fields could be a topic of discussion at the suggested meeting between trialists and the International Committee of Medical Journal Editors.
