title: Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations.
abstract: With the advent of large genetic studies examining both symptomatic and asymptomatic individuals, whether and how to disclose genetic research results have become pressing questions. The need is particularly acute in the case of LRRK2 research: Movement centers worldwide are recruiting cohorts of individuals with Parkinson's disease (PD) and their family members, including asymptomatic carriers. Clinical features and treatment are complex and evolving, and disclosure policies vary at different sites and have been modified during the course of some studies. We present the major ethical principles of autonomy, beneficence, nonmaleficence, and honesty that should guide disclosure policies in studies of families with LRRK2 mutations. We make recommendations regarding genetic counseling, policies of either active or passive disclosure, responsibilities of funders to budget for genetic counseling, clinical genetic testing where locally required for disclosure, and aspects of study design to avoid mandatory disclosure whenever feasible. © 2015 International Parkinson and Movement Disorder Society.
authors.affiliation: Parkinson Disease and Movement Disorders Unit, Neurology Service, IDIBAPS, CIBERNED, Universitat de Barcelona, Hospital Clínic, Barcelona, Catalonia, Spain.
authors.forename: Claustre
authors.initials: C
authors.lastname: Pont-Sunyer
authors.affiliation: Department of Neurology, Mount Sinai Beth Israel Medical Center, New York, NY, USA.|Department of Neurology, Icahn School of Medicine, Mount Sinai Medical Center, New York, NY, USA.
authors.forename: Susan
authors.initials: S
authors.lastname: Bressman
authors.affiliation: Department of Neurology, Mount Sinai Beth Israel Medical Center, New York, NY, USA.
authors.forename: Deborah
authors.initials: D
authors.lastname: Raymond
authors.affiliation: Department of Neurology, Mount Sinai Beth Israel Medical Center, New York, NY, USA.
authors.forename: Amanda
authors.initials: A
authors.lastname: Glickman
authors.affiliation: Parkinson Disease and Movement Disorders Unit, Neurology Service, IDIBAPS, CIBERNED, Universitat de Barcelona, Hospital Clínic, Barcelona, Catalonia, Spain.
authors.forename: Eduardo
authors.initials: E
authors.lastname: Tolosa
authors.affiliation: Department of Neurology, Mount Sinai Beth Israel Medical Center, New York, NY, USA.|Department of Neurology, Icahn School of Medicine, Mount Sinai Medical Center, New York, NY, USA.
authors.forename: Rachel
authors.initials: R
authors.lastname: Saunders-Pullman
mesh_terms: D035843:Biomedical Research / Q000941:ethics* / Q000592:standards; D005820:Genetic Testing / Q000941:ethics* / Q000592:standards; D006801:Humans; D000071158:Leucine-Rich Repeat Serine-Threonine Protein Kinase-2; D009154:Mutation; D010300:Parkinson Disease / Q000235:genetics*; D017346:Protein Serine-Threonine Kinases / Q000235:genetics*; D014342:Truth Disclosure / Q000941:ethics*
chemical_list: C495280:LRRK2 protein, human; D000071158:Leucine-Rich Repeat Serine-Threonine Protein Kinase-2; D017346:Protein Serine-Threonine Kinases
keywords: LRRK2 mutation; Parkinson's disease; clinical research; disclosure; ethics; genetic counseling