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Shabani M, Knoppers BM, Borry P. From the principles of genomic data sharing to the practices of data access committees.
Data access committees (DACs) are an integral component of managing access to genomic databases.
Currently, these databases are typically operated under restricted/controlled access and data access committees oversee the dissemination of such data.
Data access committees (DACs) were established to manage access requests but also to consult and defer to PIs if necessary.
These special access committees develop a new tier of oversight in addition to research ethics committee approval but they do not enable effective supranational sharing or access.
To avoid redundancies, the relationship between data access committees and other oversight bodies such as ethics committees and the scope of their oversight should be clarified.
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They are only available from a formal data access committee at the Samsung Medical Center, upon reasonable request.
Gabriel Popkin is a science journalist in the DC area and chair of the National Association of Science Writers' information access committee.
The 100 data set will be anonymised and made available to accredited researchers, who will have to submit a research request to a data access committee, chaired by the Cure Parkinson's Trust.
"The council was already doing it before my time, and the undergraduates on the access committee who visit sixth forms are very keen to explain we are not unfriendly to state schools.
This fall, the National Association of Science Writers' information access committee (which I'm a member of) engaged federal public information officers — who are carrying out agencies' media policies, if not writing them — in a discussion to try to improve the situation.
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