Knowledge is power? The role of experiential knowledge in genetically 'risky' reproductive decisions
Bibliographic Data
| ID | 2248773 |
|---|---|
| Authors | Felicity Boardman (0000-0002-3268-6276, University of Warwick, corresponding author), Felicity K Boardman (Division of Health Sciences Warwick Medical School University of Warwick Coventry UK) |
| Year | 2014 |
| Volume | 36 |
| Issue | 1 |
| Pages | 137-150 |
| Publication date | 2014-01-01 |
| 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 | 10.1111/1467-9566.12048 |
| PMID | 24111508 |
| OpenAlex | W1992578264 |
| Language | EN |
| Citations received | 21 |
| References cited | 44 |
Knowledge of the condition being tested for is increasingly acknowledged as an important factor in prenatal testing and screening decisions. An analysis of the way in which family members living with an inheritable condition use and value this knowledge has much to add to debates about whether and how this type of knowledge could be made available to prospective parents facing screening decisions. This article reports on in-depth interviews (conducted between 2007 and 2009) with 61 people with a genetic condition, spinal muscular atrophy (SMA) in their family. Many participants reported that their intimate familial knowledge of SMA offered them valuable insights with which they could imagine future lives. Other participants, however, found themselves trapped between their experiential knowledge of SMA and their (often) competing responsibility to maintain the wellbeing of their family. Still, others established a hierarchy of knowledge to rank the authenticity of different family member's accounts of SMA in order to discredit or justify their decisions. This article highlights the way in which experiential knowledge of the condition being tested for cannot be unproblematically assumed to be a useful resource in the context of prenatal testing decisions and may actually constrain reproductive decisions
Context (archaeology · Epistemology · Experiential knowledge · Experiential learning · Hierarchy · Political science · SMA · Value (mathematics · Congenital Anomalies and Fetal Surgery · Neurogenetic and Muscular Disorders Research · Prenatal Screening and Diagnostics · Psychology · Social Psychology
Let ‘Pregnant Women Choose the Destiny for Themselves and Their Child’. How Fertility Clinic Digital Platforms Frame Preimplantation Genetic Testing (PGT) in Spain
Life ‘on high alert’
“Ultimately, mom has the call”
The role of experiential knowledge within attitudes towards genetic carrier screening
Maternal decision-making through temporal uncertainties
Difficult decisions and possible choices
The Concept of “Genetic Responsibility” and Its Meanings
This could be me”
Evidence-based policy, knowledge from experience and validity
Beyond experiential knowledge
An alternative theoretical approach to develop a new conception about pain in people with dementia
In search of experiential knowledge
A world without Down’s syndrome’ – an evaluation of foetal diagnosis in light of the ethos of medicine
Babies come when they are ready”
Representing the ‘Voice’ of Patients
Turning suffering into side effects
We Are the Visible Proof
ART with PGD
The expressivist objection to prenatal testing
Experience as knowledge
Anticipated stigma and blameless guilt
Conducting Intensive Interviews Using Email
May the Sheep Safely Graze? A Reflexive View of the Expert–Lay Knowledge Divide
Pragmatic women and body politics
The Discovery of Grounded Theory
Disability, identity and the “expressivist objection”
Prenatal Testing and Disability Rights
Analyzing Biographies and Narratives
Imagined futures
‘Balance’ is in the eye of the beholder
The Double-Edged Helix
Prenatal diagnosis and selective abortion
Experiential Knowledge
Varieties of suffering
Choosing not to choose
Accessing the field
The experiential knowledge of patients
Reframing the meaning of disability to families
Public health research and lay knowledge
Stories in Decisions
Feelings Associated with Being a Carrier and Characteristics of Reproductive Decision Making in Women Known to Be Carriers of X-linked Conditions
Developing Email Interview Practices in Qualitative Research
Lay constructions of genetic risk
Losing the plot'? Medical and activist discourses of contemporary genetics and disability
| Unique citing works | 21 |
|---|---|
| Citations per year | 1,75 |
| Citation span | 2014 - 2026 (13) |
| Citation velocity | current |
| Highly cited | No |
| Citation types | Neutral: 21 |