#33- Huntington’s Disease: Stigma, Genetic Risk and Family Decisions

This episode focuses on published articles related to Huntington’s disease (HD). In the first segment we discuss how stigma is defined, experienced, and measured in HD research by talking to two researchers who discuss findings from a scoping review examining three decades of literature. For the second segment, we interview two researchers about their study on how individuals and families navigate genetic testing and reproductive decisions when HD runs in the family.

Segment 1: Exploring stigma in Huntington's disease: A scoping review of methods and conceptualizations for understanding experiences of gene expansion carriers and at-risk individuals

Dr Sarah Gunn is a clinical psychologist and researcher in clinical psychology at the University of Leicester, UK. She is also a member of a family affected by Huntington's disease (HD). Her primary research area is in understanding and formulating the psychological impacts of HD, and developing interventions to improve mental wellbeing among HD families (including people with the gene expansion, their caregivers and wider family members). Sarah is the author of "Coping with Huntington's", a book which combines guidance on mental health strategies and discussion of her personal lived experience of HD, and she currently holds a Wellcome award for an eight-year programme of research into mental health in HD families. Sarah can be found on Instagram @HDinMind. 

Jane Simpson is Professor of the Psychology of Neurodegenerative Conditions at Lancaster University. As both an academic and clinical psychologist she has been working to improve our understandings of the lives of people affected by conditions such as Huntington’s for over 20 years and has over 160 peer-reviewed publications. She is particularly keen to develop effective interventions to improve mental health, and practitioners’ understandings of mental health. Jane is co-lead of the Psychological Approaches and Interventions working group of the European Huntington’s Disease Network: Psychological Interventions and Approaches WG – European Huntington's Disease Network 

In this segment we discuss:

- Understanding stigma through theoretical frameworks

- The lack of a formal theoretical definition of stigma in HD research

- Who is represented in the research on stigma in HD

- The future of HD stigma research

Segment 2: The Recommendation Paradox: Perspectives on Genetic Testing in Huntington's Disease Families

Dr. Noit Inbar
Parkinson's & Huntington's Disease clinician and researcher
Movement Disorders Unit, Tel Aviv Sourasky Medical Center;
Physical Therapy Department, Stanley Steyer School of Health Sciences, Tel Aviv University

Nurit Omer, MD
Deputy Director, Neurology Department
Director, HD and CJD Clinic
Cognitive Neurology Unit
Movement Disorders Unit
Neurological Institute
Tel-Aviv Medical Center (Ichilov)
Tel-Aviv University
Tel-Aviv, Israel

In this segment we discuss:

- What the study team learned about how individuals and families come to understand their risk

- The difficult choices faced by people at risk for HD

- How experiences differ among people with HD, at-risk relatives, and spouses or partners

- Why people may approach genetic testing for themselves differently from reproductive decisions intended to prevent HD transmission to their children.

Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.

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For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others. 

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