Personalised Medicine, the Promise the Hype and the Pitfalls
9th September 2016
Excerpt from the conference programme booklet, providing the context to the presentations:
“Participation and data sharing presents a distinct set of problems in relation to personalised medicine. On an important policy level, there are national and international databases which are not interacting sufficiently with each other to make the progress needed. An underlying dimension of this policy matter concerns the motivation for collaboration and participation. The combination of self-interest and compassion for present neighbours and future generations which inspires data sharing is liable to be undermined by fears of data loss and trust violation. This in turn may lead to the worry that well-motivated patient consent to share pearls of data may be trampled underfoot in the pursuit of profit. Questions for discussion include:
What can be done to ensure that participation in data sharing, clinical trials and research is meaningful with respect to the values of participants?
What are public perceptions of and levels of trust in the recipients of big data and the technological advances those recipients pursue?
Do those perceptions vary across generations?
What public and clinical educational goals need to be considered?
How might greater public participation in data sharing and engagement in its use be inspired, in order to enhance the way in which precision medicine can proceed?
How might relevant institutions be sharing information better?
What can law achieve in regard to any of these concerns?
CHAIR: Ingrid Slade (Director, Centre for Personalised Medicine, University of Oxford)
SPEAKERS: Mark Lawler (Prof of Genetics, Queens University Belfast), Anna Middleton (Society and Ethics Research, Wellcome Genome Campus)”
The impact and reach of this event was significant; with an audience of 100+ health professionals, academics, policy makers, scientists and social scientists there was ample opportunity to debate and discuss the bioethical issues raisded by personalised medicine. As the only speaker with empirical data to present on the attitudes of publics towards the sharing of genomic data, we were able to offer a useful voice to the discussions. The event was filmed and the outcomes published in a special issue of the journal New Bioethics.