Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease

Long-term predictors for psychological outcome of pre-symptomatic testing for late-onset neurological diseases

(2018) Susana Lêdo et al.   European Journal of Medical Genetics

From older to younger: intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy

(2017) Carla Roma Oliveira et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Discredited legacy: Stigma and familial amyloid polyneuropathy in Northwestern Portugal

(2017) Álvaro Mendes et al.   SOCIAL SCIENCE & MEDICINE

What can we Learn from Patients’ Ethical Thinking about the right ‘not to know’ in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling

(2016) Lorraine Cowley   BIOETHICS

22 Years of predictive testing for Huntington’s disease: the experience of the UK Huntington’s Prediction Consortium

(2016) Sheharyar S Baig et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Subjects At-Risk for Genetic Diseases in Portugal: Illness Representations

(2015) Ângela Leite et al.   Journal of Genetic Counseling

The Cuban program for predictive testing of SCA2: 11 years and 768 individuals to learn from

(2013) T Cruz-Mariño et al.   CLINICAL GENETICS

Hereditary Ataxia and Spastic Paraplegia in Portugal

(2013) Paula Coutinho et al.   JAMA Neurology

Quality in genetic counselling for presymptomatic testing — clinical guidelines for practice across the range of genetic conditions

(2012) Heather Skirton et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Psychological Well-Being and Family Satisfaction Levels Five Years After Being Confirmed as a Carrier of the Machado-Joseph Disease Mutation

(2012) Carlos Gonzalez et al.   Genetic Testing and Molecular Biomarkers

Presymptomatic Testing for Neurogenetic Diseases in Brazil: Assessing Who Seeks and Who Follows through with Testing

(2011) Caroline Santa Maria Rodrigues et al.   Journal of Genetic Counseling

Predictive testing for Huntington's disease: II. Qualitative findings from a study of uptake in South Wales

(2010) Julia Binedell et al.   CLINICAL GENETICS

Moral landscapes and everyday life in families with Huntington’s disease: Aligning ethnographic description and bioethics

(2010) Lotte Huniche   SOCIAL SCIENCE & MEDICINE

Managing self-responsibility through other-oriented blame: Family accounts of genetic testing

(2008) Michael Arribas-Ayllon et al.   SOCIAL SCIENCE & MEDICINE