Counseling At-Risk Parkinson’s Disease Cohorts: Integrating Emerging Evidence
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Purpose of Review
This article evaluates the current state of testing and counseling viewpoints for Parkinson’s disease (PD) risk gene carriers and their families.
Recent discoveries of mutations in genes associated with increased risk for PD not only portend novel possibilities for targeted clinical research but also present salient challenges for genetic counseling.
A patient-centered and transparent approach to counseling that assesses preferences and communication styles is described to aid in facilitating the use of evolving evidence regarding strategies to attenuate PD phenoconversion in non-manifesting carriers.
KeywordsParkinson’s disease LRRK2 Genetic counseling Genetic testing Genetic screening Phenoconversion Ashkenazi Jews North African Berbers
Leonard L. Sokol extends his gratitude toward Chad Serels and Michael Star for their discussions related to the manuscript.
All authors read and approved of the final manuscript. Leonard L. Sokol and Michael J. Young conceived, organized, and wrote the first draft. Joseph Jankvoic organized, reviewed, critiqued, added intellectual content, and mentored efforts.
Compliance with Ethical Standards
Conflict of Interest
Leonard L. Sokol and Michael J. Young have nothing to disclose.
Joseph Jankovic has received research grants from Adamas Pharmaceuticals, Inc.; Allergan, Inc.; Auspex Pharmaceuticals, Inc.; CHDI Foundation; Civitas/Acorda Therapeutics; Huntington Study Group; Ipsen Limited; Kyowa Haako Kirin Pharma, Inc.; Lundbeck, Inc.; Medtronic; Merz Pharmaceuticals; Michael J. Fox Foundation for Parkinson Research; National Institutes of Health; National Parkinson Foundation; Omeros Corporation; Parkinson Study Group; Pfizer; Prothena Biosciences, Inc.; Psyadon Pharmaceuticals, Inc.; St. Jude Medical; and Teva Pharmaceutical Industries Ltd. He has served as a consultant or as an advisory committee member for the following: Adamas Pharmaceuticals, Inc.; Allergan, Inc.; Auspex Pharmaceuticals, Inc.; and Teva Pharmaceutical Industries Ltd. He has received royalties from Cambridge, Elsevier, Future Science Group, Hodder Arnold, Lippincott Williams and Wilkins, and Wiley-Blackwell. In addition, he serves on the editorial boards of Medlink, Neurology, Expert Review of Neurotherapeutics, Neurology in Clinical Practice, The Botulinum Journal, PeerJ, Therapeutic Advances in Neurological Disorders, Neurotherapeutics, Tremor and Other Hyperkinetic Movements, Journal of Parkinson’s Disease, and UpToDate.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
Papers of particular interest, published recently, have been highlighted as: • Of importance, •• Of major importance
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