Article ID: CBB713757349

Narratives of Participation in Autism Genetics Research (Marvh 2015)

unapi

Singh, Jennifer S. (Author)


Science, Technology and Human Values
Volume: 40
Issue: 2
Pages: 227-249


Publication Date: Marvh 2015
Edition Details: Special Issue: Ethics, Organizations, and Science
Language: English

This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research.

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Article Jennifer L. Croissant (March 2015) Routine, Scale, and Inequality: Introduction to the Special Issue on Ethics, Organizations, and Science. Science, Technology and Human Values (pp. 167-175). unapi

Citation URI
https://data.isiscb.org/isis/citation/CBB713757349/

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Authors & Contributors
Jacob, Marie-Andrée
Crooks, Roderic N.
Margrit Shildrick
Nakazora, Moe
Chuan Yue
Mikko Lagerspetz
Concepts
Technoscience; science and technology studies
Ethics
Research
Medicine
Participation
Expertise
Time Periods
21st century
20th century, late
Places
United States
Portugal
Denmark
China
India
Great Britain
Institutions
La Fédération québécoise de l’autisme
Committee on Publication Ethics
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