1. Objectifs

Intentions :
«Using late onset Alzheimer’s disease as an illustrative example, [the authors] highlight the uncertainties associated with information currently being disseminated in the world of the basic sciences in connection with the genetics of this disorder.» (p. 1769)

Questions/Hypothèses :
The authors argued that «[k]nowledge about the results of genetic testing for complex disease raises, then, a large number of uncertainties for both scientists and affected individuals and families that profoundly influences the way in which the postulated effects of genes are interpreted.» (p. 1769)

2. Méthode

Échantillon/Matériau :
This study relies on three samples.
-Sample 1 is composed of seventy-nine individuals who participated of The Risk Evaluation and Education for Alzheimer’s Disease Study (REVEAL) in United States. «This qualitative sample ranges in age from 37 to 76 years old (56 years on average), has on average 16.8 years of education, and eighty-six percent are women.» (p. 1770)
-Sample 2 is composed of forty «[...] first-degree relatives (primarily the children) of late-onset AD patients in Montréal, Québec. [...] They ranged in age from 29 to 70 years and 58% were women. [...] The majority are caregivers for their diagnosed parents and are primarily interested in advice in relation to this task.» (p. 1772)
-Sample 3 is composed of thirty «[...] university-educated adults aged between 25 and 39, half of them women, about their exposure to, understanding of, and interest in genetics.» (p. 1773)

Instruments :
Guides d’entretien semi-directif

Type de traitement des données :
Analyse qualitative

3. Résumé

«The paper is divided into three parts: first is a brief account of current scientific and epidemiological knowledge about the genetics of Alzheimer’s disease. This is followed in part two by a discussion of findings from interviews carried out with individuals who have one or more relatives diagnosed with late onset Alzheimer’s disease and who have participated in a randomized control trial in which they have been given information about which variant of the ApoE gene they carry. In part three, we present excerpts from interviews with individuals who also have one or more relatives diagnosed with Alzheimer’s disease, but who have not undergone genetic testing [...]. [...] We then consider what all of these findings suggest for kin and family sociability as genetic and genomic knowledge is increasingly being brought into the public domain.» (p. 1769) «We conclude, provided individuals are given appropriate information about susceptibility genes, including a frank discussion about the limitations of knowledge about ApoE for predicting AD risk, that genetic testing is likely to have few transformative effects on kin relationships and family sociality.» (p. 1774)