Objective: The global burden of neurodegenerative disease is increasing and health systems are not yet equipped to manage large numbers of people who are at risk of neurodegenerative conditions. Given the rise in demand for direct-to-consumer genetic testing to explore risk, how should healthcare professionals and health systems respond?

Background: Alongside increasing shared decision-making in healthcare, there is a growing pool of individuals who are keen to know more about their risk of Parkinson’s and dementia, or who have already sought out genetic risk information using commercial screening methods. What role do healthcare professionals have in helping individuals understand genetic risk information and what support is required to meet the growing demand?

Method: A multidisciplinary, geographically representative group with expertise in dementia, Parkinson’s disease, genetics, epidemiology, public health, patient advocacy and ethics developed an evidence-based set of recommendations in 2019.

Results: Health promotion, clinical improvements and research were covered by 18 recommendations. Of these 18 recommendations, two of them related directly to healthcare professional-patient dialogue on genetic testing.
1 – Preparation for the likely growth in the demand for genetic testing by people who want to understand their risk of a neurodegenerative disease should include establishing rigorous support systems and processes, including training healthcare professionals to counsel individuals who have undergone testing.
2 – A supportive environment is required, with national guidance and legislation when appropriate, that empowers individuals to make important lifestyle changes to prioritize brain health.

Conclusion: Specific educational programmes for healthcare professionals are needed to equip them to respond to increasingly frequent questions about genetic risk. However, healthcare professionals also need to put this information into the wider context of environmental and lifestyle factors that influence brain health and use the opportunity for health promotion messages. Irrespective of how many individuals want more information about neurodegenerative disease, there is a strong rationale for the general public to understand risk better.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/time-matters-in-brain-health-how-can-health-systems-respond-to-the-growing-demand-for-genetic-testing/