Research questions relating to hype, responsibility, data, patient participation and the role of civil society institutions in personalised medicine research.
Science and research culture of personalised medicine
especially in relation to the ways that personalised medicine has apparently fallen short of its promise; deflating the hype while recognising and defining the ongoing promise; seeking to understand the drivers in the processes whereby new research agendas promise a great deal which they may not be able to deliver.
Responsibility of medical researchers
for the application of their research in the different forms that ‘4P’ (predictive, pre-emptive, personalised, participatory) medicine can take. Medical researchers ought to and commonly do have actual persons in mind as the beneficiaries of their research. What are the impacts on those persons and their families of the knowledge of predicted ill-health and how is such data to be well-handled on a personal and a population level? The promise of more precise, predictive pre-natal screening and its application is also important in this connection.
Commercialisation of genomic data
within the NHS (e.g. in the 100,000 genome project and other similar projects); what is the proper response to this new initiative and similar ones; what are the risks attendant on patients being able to purchase their genomic data; how are these developments to be disciplined in order to ensure proper medical and societal scrutiny of the application/exploitation of findings? How does this dimension of the development of personalised medicine relate to wider questions of private involvement in healthcare?
Social, political and legal significance of personalised medicine
relating to patient participation in healthcare and questions of law, civic society and political obligation:
- the significance of developments in personalised medicine for medical professionalism and the notion of a contract, compact or covenant between medicine and citizens at large; the significance of personalised medicine for law especially regarding the use of data and privacy; the significance of personalised medicine for ways in which healthcare services are commissioned now and in the future.
- the ways in which non-medical bodies which are authoritative in people's lives should mediate and influence population participation in personalised medicine. These would include civil society institutions such as schools/universities/mosques/churches/other religious and social groupings and networks. While questions of mediation and participation are not specific to 4P medicine, their importance is heightened by 4P because of the long-term nature of the requirements for participation. Long-term trusted networks may be part of the answer to shaping public discourse and sentiment regarding healthcare towards more of a partnership model.
- the challenges for sustaining 'compassion' in healthcare which may follow as the responsibility for healthcare is increasingly borne by patients in various, technologically mediated ways. Should there be shifts towards social or other kinds of penalties for those who fail to adhere to much more targeted forms of intervention? Both the increasing cost pressures on the NHS and the fact that personalised medicine, because it provides (or at least promises to provide) a more granular approach to prevention/prediction, increases the precision with which failure to adhere to recommended care (e.g. regular screening, regular medication etc) could be documented.
These questions are not entirely new but there is still considerable uncertainty about the difference between promise and hype. There is a particular need for the questions to be addressed at a deeper social, political, economic, moral and spiritual level in order to stimulate a better quality dialogue between medicine, research and the wider population whose health and relationship with healthcare in general is at stake.
