Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations. Issue 7 (7th May 2015)

• Record Type: Journal Article
• Authors: Pont‐Sunyer, Claustre; Bressman, Susan; Raymond, Deborah; Glickman, Amanda; Tolosa, Eduardo; Saunders‐Pullman, Rachel
• Is Part Of: Movement disorders. Volume 30:Issue 7(2015)
• Page Start: 904
• Page End: 908
• Publication Date: 2015-05-07
• Subjects: Movement disorders -- Periodicals; 610
• DOI: 10.1002/mds.26250
• Languages: English
• ISSNs: 0885-3185

Abstract

<abstract abstract-type="main"> <title>Abstract</title> <p>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 <italic>LRRK2</italic> 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 <italic>LRRK2</italic> 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</p> </abstract>