Genetic testing and family entanglements
Bibliographic Data
| ID | 4592841 |
|---|---|
| Authors | Rebecca Dimond (0000-0003-1974-7289, Cardiff University, corresponding author), Sharon Doheny (0000-0003-0529-7301, Cardiff University), Louis Ballard (0000-0003-1017-4322, University of Southampton), A Clarke (0000-0002-1200-9286, Cardiff University) |
| Year | 2022 |
| Volume | 298 |
| Pages | 114857 |
| Publication date | 2022-04-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Social Science & Medicine (JOURNAL) |
| Journal identifiers | ISSN: 0277-9536 • E-ISSN: 1873-5347 |
| Publisher | Elsevier BV (PUBLISHER) |
| DOI | 10.1016/j.socscimed.2022.114857 |
| OpenAlex | W4213421502 |
| Language | EN |
| Citations received | 13 |
| References cited | 25 |
The development of the 'new genetics' in the early 1990's opened up a new space which required some patients and families to understand and navigate genetic testing. The social science literature that has grown alongside the 'new genetics', now spanning more than thirty years, has continued to explore and question assumptions about attitudes and responses towards genetic technologies. In this article we highlight how individual experience of genetic disease and personal responses towards genetic technologies can only be understood by considering their context. We focus on the rich literature on family within sociology, science and technology studies, anthropology, and family studies, to explore the myriad ways in which family is implicated in the patient experience of genetic testing. We explore these connections by drawing on a set of interviews held with individuals who have undergone a predictive test for a genetic condition, including Huntington's Disease and breast cancer. Five themes were developed: family disclosure, family gatekeeping, going for testing,individual and collective communication practices, and receiving a negative test result. To conclude, we highlight how these connections might be considered through the lens of entanglement, explaining the complex mechanisms through which family and genetics are intimately entwined
Biology · Genealogy · Genetic testing · Sociology · Biomedical Ethics and Regulation · History · Neuroethics, Human Enhancement, Biomedical Innovations · Race, Genetics, and Society · Genetics
Communicating Genetic Information in Families with Inherited Late-Onset Neurodegenerative Diseases
“Irresponsible Not to Share Such Important Information”
I am happy to be alive, but I prefer to have children without my chronic disease”
Displaying family on the DNA platform
Non‐Directiveness and Authenticity in the Predictive Genetic Clinic
Navigating intimate practices under the spectre of familial dementia
Coping With the Spectre of Cardiac Mortality
Relational dynamite
Living with the rare late-onset genetic disease Cadasil
Anticipating the future
Whatever is bad goes back to the woman
Stop-motion storytelling
Becoming restrained
‘It’s a family affair’
Rethinking Family Practices
The Concept of “Genetic Responsibility” and Its Meanings
Questions of kinship and inheritance in pediatric genetics
May I have your uterus? The contribution of considering complexities preceding live uterus transplantation
Lingering technological entanglements
Exploring genetic responsibility for the self, family and kin in the case of hereditary raised cholesterol
Becoming-with' a repeat healthy volunteer
From representation to mediation
Managing self-responsibility through other-oriented blame
Making genetics not so important
Collaboration and entanglement
Taking part
Genetic thinking and everyday living
Intimate Entanglements
Displaying Families
Negotiating identity at the intersection of paediatric and genetic medicine
Entangled local biologies
| Unique citing works | 13 |
|---|---|
| Citations per year | 4,33 |
| Citation span | 2023 - 2026 (4) |
| Citation velocity | current |
| Highly cited | No |
| Citation types | Neutral: 13 |