New ways of using vast amounts of data could transform scientific practice for the better. It is vital that decisions about the use of individual medical data are as well-informed as possible.
The International Data Sharing Conference 2010 will provide a venue in which debates about these issues can flourish, and will be of interest to anyone concerned about large international projects involving personal medical data.
The conference will seek to address some of the challenges of data sharing, such as:
· Can we promise anonymity of research participants when medical records, whole sequences and phenotypic data are being used for research purposes?
· What is the best way to harmonise different datasets collected for different purposes?
· Should participants be fed back individual findings?
· Are our national research governance systems adequate to cope with global data sharing?
· What new IT mechanisms exist to share data and samples that address some of these issues?
· How should data-generators be rewarded for their efforts to the scientific community?
· What projects provide examples of good practice?
The conference will use a conversational format, using panels focussed on specific questions to generate insights into these issues. Our plenary sessions will focus on feedback, new technologies for data sharing, governance structures for research and safeguarding identifiability.
In addition to the plenary panel sessions, there will be break-out sessions, workshops, presentations in a ten minute ‘stations’ format, a ‘meet the experts’ lunch, and presentations by our artists in residence.
We have an exciting range of speakers from different fields and different countries around the world. You can see all the details on the conference programme which is attached to this email.
It is very important to register now or as soon as possible, as the conference is now only 5 weeks away and we expect a flurry of registrations at around this time, so please secure your place if you wish to attend, before they run out!!
The conference will seek to address some of the challenges of data sharing – such as: How should data-generators be rewarded for their efforts to the scientific community? Can we promise anonymity of research participants when whole sequences and phenotypic data are being used for research purposes? What is the best way to harmonise different datasets collected for different purposes? Should participants be fed back individual findings? Are our national research governance systems adequate to cope with global data sharing?
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