Genetic Future

Mark Henderson reports that an influential UK think-tank, the Nuffield Council on Bioethics, has launched an inquiry into personalised medicine:

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
misdiagnosing yourself.”

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.


  1. #1 LordGenome
    April 21, 2009

    The author sounds to have his own political agenda with the description of the UK medical system as “socialist”. Perhaps he means publicly funded through taxation – not quite the same thing. Is he advocating a system in which the less affluent are left to die? In most European countries there is substantial state financial input into healthcare. Be that as it may, if taxpayers aren’t funding healthcare, mostly insurance companies (or rather their clients) are. And they all want value for money, which includes the right medicine, in the right dose to the right patient. A number of drug trials are now keenly interested in the genetic (or genomic) background of the patients, and in the case of oncology, of the tumors being treated. We can all benefit from this, regardless of our political hue and surely the expectation is that personalized medicine upon us, and it is an area where genomics is set to have huge impact.

  2. #2 Daniel MacArthur
    April 21, 2009

    Note “comparatively socialist”. It’s not hard to have a more socialist healthcare system than the US. As for my own political perspective: I live in the UK rather than the US for a reason, and I don’t view the term “comparatively socialist” as an insult – just a statement of fact.

    You are of course completely correct that there are plenty of vested interests in exploring the consequences of personalised medicine. I was simply pointing out (rather trivially) that the consequences of PM could be quite different in different Western countries depending on the healthcare system in question.

  3. #3 Paul
    April 22, 2009

    Great. So it’s okay for the NHS to provide reiki and homeopathy, but as soon as patients want to try something that has some evidence to support it, we have to have an enquiry.

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