Narratives of Participation in Autism Genetics Research
Bibliographic Data
| ID | 11261580 |
|---|---|
| Authors | J S Singh (0000-0001-8622-3093, Georgia Institute of Technology, corresponding author) |
| Year | 2015 |
| Volume | 40 |
| Issue | 2 |
| Pages | 227-249 |
| Publication date | 2015-03-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Science Technology & Human Values (JOURNAL) |
| Journal identifiers | ISSN: 0162-2439 • E-ISSN: 1552-8251 |
| Publisher | SAGE Publications (PUBLISHER • US) |
| DOI | 10.1177/0162243914542162 |
| OpenAlex | W2015630013 |
| Language | EN |
| Citations received | 9 |
| References cited | 50 |
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
Autism · Autism spectrum disorder · Autonomy · Bioethics · Confidentiality · Context (archaeology · Developmental psychology · Informed consent · Narrative · Negotiation · Political science · Social science · Sociology · Autism Spectrum Disorder Research · Ethics and Legal Issues in Pediatric Healthcare · Ethics in Clinical Research · Law · Medicine · Psychology · Social Psychology
Isis Current Bibliography of the History of Science and Its Cultural Influences 2019
Parenting work and autism trajectories of care
The categorisation of resistance
Asperger’s syndrome does not exist”
Note on recruitment as an ethical question
Empowerment in decision-making for autistic people in research
The social value of genomic sequencing for disadvantaged families facing rare disease
Routine, Scale, and Inequality
From the Profound to the Mundane
Life Exposed
Critical Bioethics
The Wounded Storyteller
Making sense of autism
Medicating Race
The Ethnography of Moralities
The Politics of Life Itself
Human Tissue and ‘the Public’
Connective tissue
Beyond the ‘therapeutic misconception’
Tissue donation to biobanks
The Political Economy of Hope
If I Could in a Small Way Help”
Information That Should Be Given to HIV Cohort Participants during Ongoing Research
Parent Perspectives on Pediatric Genetic Research and Implications for Genotype-Driven Research Recruitment
Epilepsy Patient-Participants and Genetic Research Results as “Answers”
The bioethical misconception
National Biobanks
The Growing Engagement of Emergent Concerned Groups in Political and Economic Life
On the Emergence of Science and Justice
Why Justice
Constructing Participation in Genetic Databases
Can ethnography save the life of medical ethics
"Beyond "misunderstanding
I just want permission to be ill
Why do people cooperate with medical research? Findings from three studies
The forms and limits of medical ethics
Essays on the Anthropology of Reason
Enterprising or altruistic selves? Making up research subjects in genetics research
Social science and bioethics
Securing our genetic health
| Unique citing works | 9 |
|---|---|
| Citations per year | 0,82 |
| Citation span | 2015 - 2022 (8) |
| Citation velocity | historical |
| Highly cited | No |
| Citation types | Neutral: 9 |