An early diagnosis is not the same as a timely diagnosis of Parkinson’s disease

We do research to find answers to questions. These can be very practical or extremely esoteric. Both are vitally important – from studies that establish the best treatments for a disease to theoretical mathematics. Some research has immediate practical value, whereas some may not have any known economic benefit for years (for example the computer that I’m writing this on and you’re reading it on could not work without our understanding of quantum mechanics).

So if research can answer the ‘how’ questions, what about the ‘why’ – or even the ‘whether’ questions? These can be the ethical, social and philosophical challenges that cannot be easily answered with a randomised clinical trial, meta-analysis or other statistical constructs, yet must be addressed with almost all research outputs. Dolly the sheep was cloned in 1996 – we can clone a large mammal; but should we? The Manhattan project harnessed the power of the splitting of the atom in the 1940s, but such discoveries have only been used twice in wartime. We have discovered genes that hugely increase one’s risk of certain diseases, like breast or ovarian cancer, that are present from birth – but societies’ current rules exist to prevent testing children for many of these conditions.

We have just published a paper that tries to address some of the ethical and social challenges that affect our work. Parkinson’s remains a progressive disease with no cure, and yet we (and many others around the world) are working hard to make it easier to diagnose Parkinson’s at a much earlier stage. With infections and cancers, the axiom that earlier diagnosis is better for the individual holds as earlier detections leads to earlier treatment which is more likely to result in cure. However, that logical end point does not yet exist in Parkinson’s. Our position is that while research may well provide the tools for earlier diagnosis of Parkinson’s, the physician in clinic should not blindly use those tools, but engage in a dialogue with their decision-making partner – the patient. All medical interventions bring benefit and risk – and the art of medicine is in explaining both and finding the right balance. This is clear with major operations where both parties literally sign on the dotted line that they have discussed and accept the proposed benefits and risks. But the same is true even for making a diagnosis: benefits include knowledge of what is causing distress, discomfort and disease, access to potential treatments and support, planning for one’s future with understanding of how one’s life might change as a result of the condition; but there are risks too – social and personal stigma of disease, higher actuarial risk resulting in more expensive insurance products, fear of effects or side effects that may never happen and many more. Each patient brings their own history, agenda, hopes and fears to the clinic, and a one-size fits all approach cannot be used.

The paper is open access and we would love you to read, share and comment on our article. As Western societies have an increasingly older population, and some data suggesting that Parkinson’s is becoming more common, we all need to grapple with questions like these: who should be diagnosed, when should they be diagnosed, can we afford possible treatments – which risks will we accept and what benefits make those risks worthwhile?

The article can be found here– An early diagnosis is not the same as a timely diagnosis of Parkinson’s disease

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