Patients’ views on the ethical challenges of early PD detection

I read this paper this morning and thought it represented an important step forward in our understanding of this delicate issue

Many of us are working on risk factors of Parkinson’s and early identification strategies, but what do patients with PD think about finding out they were at risk before the point of diagnosis? Here the authors surveyed >100 patients with PD and found interesting results. 

More than half would not have wanted to know that they were at risk if there was no medical treatment that could be offered prior to diagnosis… but this number dropped to 15% if there were lifestyle changes that one could make to reduce risk.

10% of patients thought disclosure of being high risk should never happen before diagnosis, but about a quarter (23%) thought that such disclosures should be made. The largest proportion of patients thought that it depended on what an individual wants to know. This personal preference is something that we considered in a paper last year focussed on Early vs Timely diagnosis (link here).
These issues are fundamental to arriving at a point where we have early identification strategies, either lifestyle or medical, and a real preventive approach to neurodegenerative disease. There is an awful lot of work that needs to be done and we require ‘buy-in’ and commitment from patients, the public, primary care, public health, policymakers and research. Our Time Matters initiative launched last year covers the various requirements to make Preventive Neurology a reality, and studies such as the one outlined here are examples of things that will take us further forward…

– Alastair

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