MovDisordV3, Main, Exploration, bibRecord, 000265

Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations.

Identifieur interne : 000265 ( Main/Exploration ); précédent : 000264; suivant : 000266

Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations.

Auteurs : Claustre Pont-Sunyer [Espagne] ; Susan Bressman [États-Unis] ; Deborah Raymond [États-Unis] ; Amanda Glickman [États-Unis] ; Eduardo Tolosa [Espagne] ; Rachel Saunders-Pullman [États-Unis]

Source :

Movement disorders : official journal of the Movement Disorder Society [ 1531-8257 ] ; 2015.

RBID : pubmed:25952684

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.

DOI: 10.1002/mds.26250
PubMed: 25952684

Affiliations:

Le document en format XML

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<front><div type="abstract" xml:lang="en">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.</div>
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Movement Disorders (revue)

Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations.

Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations.

Source :

Abstract

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