Families dealing with the uncertainty of genetic disorders
The case of Neurofibromatosis Type 1
Bibliographic Data
| ID | 2249103 |
|---|---|
| Authors | Daniele Carrieri (0000-0002-3143-8430, Egenis Department of Sociology, Philosophy and Anthropology University of Exeter UK, corresponding author), Hannah Farrimond (0000-0001-9946-8620, Egenis Department of Sociology, Philosophy and Anthropology University of Exeter UK), Kelly (0000-0003-1045-4615, University of Exeter), Susan Kelly (0000-0002-3160-5745, Egenis Department of Sociology, Philosophy and Anthropology University of Exeter UK), Peter Turnpenny (Clinical Genetics Royal Devon & Exeter Hospital Exeter UK), Peter D Turnpenny (0000-0002-5947-0897, Exeter Hospital) |
| Year | 2016 |
| Volume | 38 |
| Issue | 5 |
| Pages | 753-767 |
| Publication date | 2016-06-01 |
| 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 | 10.1111/1467-9566.12401 |
| PMID | 26864895 |
| OpenAlex | W2259855458 |
| Language | EN |
| Citations received | 4 |
| References cited | 62 |
Some scholars contend that genetic medicine is transforming the experience of illness and the social category of the family - bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However, research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with Neurofibromatosis Type 1 (NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined as a 'condition without parameters'. These characteristics makeNF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow us to investigate the interrelation of individual and familial constructions of the uncertainty ofNF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies
Biology · Developmental psychology · Epistemology · Neurofibromatosis · Reductionism · Repertoire · Sociology · Transformative learning · Genetics · Hereditary Neurological Disorders · Neurofibromatosis and Schwannoma Cases · Psychology · Social Psychology
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| Unique citing works | 4 |
|---|---|
| Citations per year | 0,44 |
| Citation span | 2017 - 2024 (8) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 4 |