Genetics, emotion and care
Navigating future reproductive decisions in families of children with rare genetic conditions
Bibliographic Data
| ID | 2250433 |
|---|---|
| Authors | Catherine Coveney (0000-0002-1393-8087, Department of Criminology, Sociology and Social Policy School of Social Sciences and Humanities Loughborough University Leicestershire UK, corresponding author), Basma Salem (0009-0005-8470-6469, Department of Criminology, Sociology and Social Policy School of Social Sciences and Humanities Loughborough University Leicestershire UK) |
| Year | 2025 |
| Volume | 47 |
| Issue | 2 |
| Pages | e13854-e13854 |
| Publication date | 2025-02-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Sociology of Health & Illness (JOURNAL) |
| Journal identifiers | ISSN: 0141-9889 • E-ISSN: 1467-9566 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/1467-9566.13854 |
| PMID | 39395176 |
| OpenAlex | W4403349036 |
| Language | EN |
| Citations received | 1 |
| References cited | 41 |
Little is known regarding the future reproductive decision-making of parents of children with rare genetic conditions. Our research draws on data from an online survey and qualitative photo-elicitation interviews with families living with Noonan Syndrome. We demonstrate how genetic knowledge and prenatal genetic testing become embedded in reproductive practices. Yet the idea of using selective genetic technologies to influence reproductive outcomes remains highly emotive. Our analysis reveals that for these parents, the rationalities of reproduction, although technologised and biomedicalised, remain centred on caring for their disabled child. Genetic subjectivities become entangled with responsibilities of care-giving and emotion tied to the realities of living with disability. We argue that for these parents, reproductive decisions are relational and affective, situated within families and communities and shaped by access to emotional, financial, physical and temporal resources. Our findings provide new insights into the ontologies of selective genetic technologies and reproductive governance in families living with disability
Biology · Developmental psychology · Emotive · Genetic testing · Pregnancy · Reproductive technology · Sociology · Ethics and Legal Issues in Pediatric Healthcare · Genetics · Prenatal Screening and Diagnostics · Psychology · Reproductive Health and Technologies
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Reflecting on reflexive thematic analysis
Venturing into the visual voice
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Picture this
Conceiving the New World Order
Child Health and Parental Relationships
Moral Laboratories
Choosing not to choose
Babylost
Experience as knowledge
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Experiential knowledge of disability, impairment and illness
Social reproduction, labour and austerity
Dis-mantling stigma
The Dis/ability Complex
I Suppose I Think to Myself, That's the Best Way to Be a Mother
I Think I Stick Out a Bit
Enacting genetic responsibility
Doing the right thing
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| Unique citing works | 1 |
|---|---|
| Citations per year | 1 |
| Citation span | 2025 - 2025 (1) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 1 |