Genetic Future

I just received the following email from the Nuffield Council on Bioethics – I’d recommend anyone interested in the future of personalised medicine in the UK consider submitting their views to the inquiry. I’ll be putting together my own submission, which I’ll also post here on Genetic Future.

Medical profiling and online medicine: the ethics of ‘personalised’ healthcare in a consumer age

The Nuffield Council on Bioethics is currently running a consultation on Medical profiling and online medicine: the ethics of ‘personalised’ healthcare in a consumer age. The paper provides background information and asks questions on a number of different issues relating to medical profiling and online medicine. We are also inviting respondents to inform us about any other areas that we should consider. We are seeking the views of people including those who have used medical profiling and online medicine services, people working in the area and other stakeholders, academics, policy makers and members of the public. To this end, we would greatly value your contribution given your interest and expertise in genetics generally and personal genomics specifically.
 
We should be most grateful if you would also include a notice about this consultation on your website, to inform your readers that we are seeking their views. All documents can be downloaded from the Council’s website or obtained by contacting us.
 
The role of the Council is to examine ethical issues raised by new developments in biological and medical research. It is an independent body, funded jointly by the Nuffield Foundation, the Medical Research Council and the Wellcome Trust. It works by considering topics in depth, publishing reports on its findings and making recommendations to policy makers.

In September 2008, the Council set up a Working Party to examine the ethical issues raised by medical profiling and online medicine, chaired by Christopher Hood, Gladstone Professor of Government at the University of Oxford. Further details about the Working Party, which also includes members with expertise in economics, genetics, law, medicine, philosophy, social science and telemedicine, can be found on the Council’s website.

In its work, the Working Party will consider the ramifications of different technologies, including:
 

      • electronic health records;
      • web enabled health information;
      • internet based drug purchasing;
      • telemedicine;
      • body imaging; and
      • DNA profiling.

The deadline for responses is 31st July 2009. The Working Party will consider all the consultation responses received and use them to inform its deliberations. A report with conclusions and recommendations is expected to be published in Spring 2010, and a copy of the final report will be sent to all consultation respondents.