The Nuffield working party includes nine scientists, social scientists,
lawyers and philosophers. It will consider whether genetic tests ought to be
regulated more tightly, and whether people who buy them and then consult
their GPs about the results should have to pay for such follow-up advice.
The inquiry will also examine other aspects of direct-to-consumer healthcare,
such as MRI and CT scans […] Hugh
Whittall, director of the Nuffield Council, said: “Services that were once
provided only in a particular medical framework are now becoming available
on a consumer basis where choice is being stressed. This raises issues of
access, equality, and the potential for being misinformed or for
US readers may be puzzled by the phrase “whether people who buy them and then consult
their GPs about the results should have to pay for such follow-up advice”. This is, of course, an issue in the UK due to the comparatively socialist medical system here, under which most medical appointments (including routine doctor’s appointments) are free.
This means that discussion of personalised medicine creates a particular tension here on top of the usual fears about genohype: if patients reeling from the results of a genome scan end up chewing through unnecessary extra medical appointments, the taxpayer will foot the bill, and an already highly strained public system will have to cope with an additional load. This focus is clear from two of the inquiry’s terms of reference:
(d) the tensions that might arise between increasing expectations for
highly tailored care with the need to provide healthcare for all in the NHS [National Health Service];
(e) the extent to which personalised services can be offered as part of
a fair and efficient operation of private and public healthcare systems;
Such inquiries seem to be popping up like mushrooms these days – for instance, the UK House of Lords has an inquiry into Genomic Medicine that I gather is due to report at some point in the next few weeks. Both governments and the genetic testing industry will no doubt be waiting for the reports from these bodies with considerable interest.
Henderson also points to an upcoming event that may be of interest to UK readers of this blog: a debate at the Cheltenham Science Festival on June 6th entitled Your Genetic Future.