Objective: Estimating the ethical acceptability of early Parkinson’s Disease (PD) research among healthy individuals participating in a PD screening study in terms of risk disclosure and possible associated lifestyle changes.

Background: Research in prodromal PD has become increasingly important over the last two decades. However, considering the missing therapeutic options, the ethical justification for communicating an increased risk for a future neurodegenerative disease to otherwise healthy individuals must be scrutinized. Several ethical recommendations can be derived from recent studies to preserve the individual’s right not to know and provide them the best possible support. However, so far no study directly asked healthy individuals on their perspective on risk disclosure within the framework of prodromal PD studies [1].

Method: A standardized questionnaire was assessed in 80 volunteering healthy participants of the Prodromal Alpha-Synuclein Screening in Parkinson’s Disease (PASS-PD) study. Aim of the questionnaire was to evaluate whether and under what conditions risk disclosure for PD can be legitimate.

Results: Regarding the question under which conditions participants would like to know their risk for PD, only 64 % indicated that they would like to know their risk, if there was no disease-modifying treatment available. Provided that a pharmaceutic treatment would be obtainable, 94% endorsed risk disclosure. 99% of the participants stated that they would like to know their personal risk, if specific changes in lifestyle could positively influence the progress of the disease. Also, 99% declared that they would change lifestyle after receiving information on an increased risk for PD, for example by changing nutrition or activity levels.

Conclusion: Results of the PASS-PD study indicate that healthy individuals participating in a prodromal PD screening study tend to have a positive attitude concerning the early detection of PD and its communication, specifically considering the resulting possibility for early modification of lifestyle factors to counteract progressing neurodegeneration. These findings provide a justification for recruitment of individuals for prodromal PD studies without the possibility of early pharmacological treatment. Future studies on prodromal PD should regularly include advice for lifestyle changes.

References: [1] Schaeffer, E., Toedt, I., Köhler, S., Rogge, A., & Berg, D. (2021). Risk Disclosure in Prodromal Parkinson’s Disease. Movement Disorders: Official Journal of the Movement Disorder Society. https://doi.org/10.1002/mds.28723

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MDS Abstracts - https://www.mdsabstracts.org/abstract/importance-of-lifestyle-advice-for-participants-in-studies-of-early-parkinsons-disease/