Sharing genomic research data: launch of new study

Anna gave this peer reviewed poster presentation at the Association of Genetic Nurses and Counsellors (AGNC) spring meeting which took place in Cambridge, England
17th April 2012

From conference program:

"Elements of a person's past, presemt amd future medical health can now be revealed in a matter of weeks via whole exome sequencing of a saliva or blood sample. Such technology is frequently used in research to understand the genomic basis of disease and will very soon be used within clinical health services.

It has been considered good practice for many years to conduct genomic research anonymously and not share any individual results with research participants. However, there is mounting pressure to change this approach and begin to share individual results with research participants. There is, however, no clear guidance or evidence to suggest what sort of data research participants want - should it only relate to clinically actionable conditions or would participants be interested in receiving results with broader implications or even their raw sequence data? There is an urgent need tof large-scale empirical research to gather evidence on what is reasonable, responsible and indeed ethical to share.As a contribution to this process we have designed a mix-methods study and have launched an innovative questionnaire (see that uses film to explore the ethical implications of whole genome research. The questionnaire is accessed online. We are inviting genetic counsellors, genomic researchers, health professionals and lay members of the public world-wide to complete the questionnaire and are aiming for 20,000+ responses. This poster will introduce the study design, explain why the research into genome ethics is important and discuss the relevance of this to both the research and clinical genetics community."



Middleton A, Parker M, Wright C, Firth H, Carter N, Hurles M on behalf of the DDD team (2012) Sharing genomic research data: launch of new study.  Association of Genetic Nurses and Counsellors annual conference.  Cambridge.  April 17th.  Poster presentation.