In this article I explore the meanings acquired by the notion of ‘genetic
inheritance’ for families in Rio de Janeiro affected by a rare hereditary disorder,
Machado-Joseph disease. My analysis examines three points: 1) how
experience of the disease was thematized in the family prior to knowledge of
its genetic and hereditary origin; 2) how knowledge of genetics affected the
family’s perception of their health and reproduction through the notion of
risk contained in medical explanations; 3) finally, I problematize the meanings
of ‘hope,’ a sentiment frequently cited by people with the disease and
their descendants. Notably, despite the high value attributed to science and
‘medical progress,’ the use of certain biotechnologies is not always seen
as positive or capable of enabling choices and actions in response to a rare
disease. Notions of risk, responsibility and hope thus acquire singular contours
for managing life and the continuity of the family
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Author Name: Waleska de Araújo Aureliano
URL: View PDF
Keywords: Rare Genetic Disease; Machado-Joseph Disease; Genetic Inheritance; Family and Kinship; Hope.
ISSN: 1809-4341
EISSN:
EOI/DOI: DOI: http://dx.doi.org/10.1590
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