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Shooting a moving target. Researching autism genes: An interview study with professionals
Kristien Hens1, Hilde Peeters2, Kris Dierickx3
1Department of Philosophy, University of Antwerp, Stadscampus, Rodestraat 14, S.D.409, 2000 Antwerpen, Belgium.
European Journal of Medical Genetics
|January 2, 2016
Summary
Genetic research on autism genes presents unique ethical challenges due to the condition's complexity. Professionals highlight concerns about participant inclusion, research aims, and methodology in autism gene studies.
Area of Science:
- Neuroscience
- Genetics
- Bioethics
Background:
- Autism spectrum disorder (ASD) presents a wide phenotypic variety and uncertain genetic origins.
- Ethical considerations in autism gene research are distinct from general genetic research.
- Ongoing discussions about the classification of autism necessitate careful ethical review.
Purpose of the Study:
- To identify and map ethical issues in autism gene research from the perspective of professionals in the field.
- To understand how the heterogeneity of autism impacts ethical considerations in genetic studies.
Main Methods:
- Qualitative study involving interviews with 15 professionals specializing in autism.
- Exploration of experienced ethical issues in the context of autism gene research.
Main Results:
- Respondents indicated that the heterogeneity of the autism phenotype significantly influences research ethics.
- Ethical concerns span participant selection, the definition of research objectives, and research conduct.
- Professionals' views reflect a mix of skepticism and hope regarding genetic research in autism.
Conclusions:
- A systematic ethical framework and protocols are lacking despite the increase in autism gene research.
- The complexity of autism poses unique challenges for research aims and methodologies.
- Autism professionals emphasize the need for careful ethical reflection in this rapidly advancing field.
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