The need to know

Is an expert patient a better patient? The doctor-patient relationship is tending increasingly towards a partnership: they may not be equals in terms of knowledge, but it is now recognised that patients are entitled to assume some decision-making responsibilities regarding their healthcare.

But where are patients to get the information that will enable them to make such decisions? At present the most freely available source is the internet, but the content is unmonitored and advice given may be incomplete, misleading or downright dangerous.

Just as we trust the doctor to make a correct diagnosis and prescribe the most appropriate therapy, should we not also be able to rely on the drug manufacturer to give us all the information we need about the product we are taking? Plainly the European Parliament doesn't think so.

The Commission's intention was to give the patient better access to information about treatment, and clearly not to open the door to American-style direct product marketing. But the MEPs seem to think that agreeing to the proposal would merely hand big pharma another opportunity to line its pockets, and by rejecting it have denied the patient the right to reliable and accurate information from those best able to give it: those who have investigated, developed, tested and gained approval for the drug.

But how much should we be entitled to know when something is wrong with us and where should the line be drawn? If I were diagnosed as having a serious condition, I would want to know exactly what was happening inside my body and what I could expect from the treatment. Recent research suggests that a positive mental attitude doesn't increase the ability to survive life-threatening conditions such as cancer, but at least I would feel more in control and better able to make decisions about my future.

But what if I hadn't actually got the disease - just a genetic predisposition that meant I might develop it at some point. Would I want to know?

Next year a healthy 32 year-old mother of two young children is to undergo a double mastectomy to reduce her statistically high chances of developing breast cancer. Who is to say whether her choice is the right one, but as the study of the human genome progresses it is the kind of decision that will face increasing numbers of us. Genetic tests for conditions such as skin complaints and obesity could soon be available over the counter in the local high street. So how far off is automatic screening at birth to see which diseases babies are likely to develop later in life? And to whom and when should that information be given?

There is a Chinese proverb that runs: 'If I worry about the future, will it change it?' Perhaps not, but given access to the right information, we might all be able to influence it a little.