Personalised medicine in the consumer age
‘Personalised medicine’ is a vague but increasingly spouted term these days. No one’s entirely sure what it means, but it encompasses buying Viagra online, consulting your doctor over the internet and having your genome sequenced through one of the many companies on the web. The commercial sector is increasingly offering health services to the consumer. And this raises difficult questions over what the consequences are and how we handle them.
Such questions are a speciality of the Nuffield Council on Bioethics, which prides itself on thoroughly reviewing such topics as they emerge. This week the Council released its report on Medical profiling and online medicine: The ethics of ‘personalised healthcare’ in a consumer age with a special launch event at The Law Society in London.
The title of the report reflects the two main aspects of concern in this broad topic:
- the advent of personal genetic tests and consumer access to imaging scans (such as CT and MRI scans) that consumers can now purchase directly without seeing a doctor, and;
- the increase in public access to health information, advice, diagnosis, medicines and health records, born of the internet.
It all points to more consumer choice in healthcare. That’s often considered to be for the better, but does more choice make for better healthcare decisions? And as a result, how much responsibility must we take on as individuals, when we rely less on the judgements of our doctors and policymakers?
The Council appointed a Working Party of scientists, ethicists, philosophers, sociologists and lawyers, which researched and debated the topic over two years. In the course of their investigation, they considered six case studies that represent the issues at hand:
- The quality and availability of online health information,
- Online personal health records (services that offer a way for the individual to maintain and organise information about their health. Google and Microsoft are among the companies moving into this area),
- Buying medicines online,
- Telemedicine (the use of communications technology to offer health services (e.g. doctor–patient consultation) remotely),
- Personal genetic profiling, often to ascertain one’s risk of developing diseases such as Parkinson’s disease or diabetes,
- Body imaging – from brain scans to whole body imaging.
Each of these are very different and come with their own specific concerns, but looking at the Council’s conclusions and recommendations for all of them, there are common themes:
- Websites containing health information should be transparent about who they are, who funds them, where their information comes from, what that information can realistically be used for – and the possible consequences – and what their users’ rights are.
- Some form of official accreditation for such websites or services is needed.
- Governments need to provide high-quality health information on the internet (something the NHS is already doing) and doctors should direct patients to these sites.
- Doctors will increasingly require specific training and advice on how to care for patients who come to them with medicines or medical information from the internet.
- The fast pace of development means each of these sectors and their impact needs to be monitored closely, and regulation and training adjusted accordingly.
Although this all sounds ominous, the authors are quick to point out that there is so far no evidence of anything going wrong. Indeed, there are numerous positive effects of these technologies delivering benefits around the world, from increasing patient understanding to helping people in remote areas access better healthcare.
The real source of tension, it seems, will be the conflict between the individual and society. How will we balance our demand for extra tests and expensive personal treatments, for example, with the extra strain on nationwide healthcare budgets? How will we weigh up a person’s desire to know of their genetic risk of Parkinson’s disease – driven by the possibility of doing something about it – with the need to regulate such tests and explain the limitations of their interpretation?
As the authors of the report put it:
We need to find ways of balancing individual choice with the principle of social solidarity i.e. that we should share the responsibility to help people in need.
These issues aren’t going to go away – already in the news this week we’ve had scientists exploring genetic profiling by publishing their own genomes and the government investing £50 million to improve genetic testing for cancer drugs. Personalised medicine is becoming more commonplace and more complex, providing more power over your own healthcare. But with great power, comes great responsibility.
You can read the full report and a summary of these issues and more on the Nuffield Council on Bioethics website.
The Nuffield Council on Bioethics is part-funded by the Wellcome Trust.