Title
Shooting a moving target : researching autism genes : an interview study with professionals Shooting a moving target : researching autism genes : an interview study with professionals
Author
Faculty/Department
Faculty of Arts. Philosophy
Publication type
article
Publication
London ,
Subject
Philosophy
Human medicine
Source (journal)
Journal of medical genetics. - London
Volume/pages
59(2016) :1 , p. 32-38
ISSN
1769-7212
ISI
000368283900007
Carrier
E
Target language
English (eng)
Full text (Publishers DOI)
Affiliation
University of Antwerp
Abstract
Background: Given the wide variety of the phenotype, the uncertain genetic origins and the discussions surrounding the status of autism itself, genetic research on autism genes generates specific ethical questions that are not completely analogous to the ethical issues of genetic research in general. Method: In order to map ethical issues surrounding research on autism genes, as experienced by professionals in the field of autism, we interviewed 15 Belgian professionals. Results: We found that respondents believed that the heterogeneity of the autism phenotype affects the ethics of research on several levels. It affects issues regarding who to include in research on autism genes, regarding what the aim is of such studies, and how the research is done. Conclusions: Although genetic research on autism genes is proliferating, a systematic ethical reflection and protocol is missing. With this study we have shown that autism professionals in Belgium express both skepticism and hope with regard to genetic research and raise important points with regard to the effect that the complexity of autism has on research aims and methodology. (C) 2015 Elsevier Masson SAS. All rights reserved.
E-info
https://repository.uantwerpen.be/docman/iruaauth/e5f64e/129989.pdf
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