Genetic Testing, Birth, and the Quest for Health
Bibliographic Data
| ID | 5337369 |
|---|---|
| Authors | Joëlle Vailly (0000-0001-9300-0971, Inserm, corresponding author) |
| Year | 2014 |
| Volume | 39 |
| Issue | 3 |
| Pages | 374-396 |
| Publication date | 2014-05-01 |
| 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 Inc (PUBLISHER) |
| DOI | 10.1177/0162243913509413 |
| OpenAlex | W2333162321 |
| Language | EN |
| Citations received | 1 |
| References cited | 30 |
Newborn screening for genetic diseases has developed rapidly in Western countries. These biopolitics raise the question of birth as a sociological "knot" insofar as it is the threshold between the (possibly ill or disabled) child and the fetus. The question therefore addressed in this text, based on a field study of newborn screening for cystic fibrosis in France, is that of the link between the quest for good health (through treatment) and the elimination of poor health (by prenatal diagnosis). Do they reinforce each other or, on the contrary, are they contradictory? I analyze the positions of both mothers of screened children and clinicians regarding the following three points: prenatal diagnosis to preclude sets of sick siblings, identification of heterozygous individuals, and generalized prenatal screening. This study shows how increasingly attentive patient care and an increasingly demanding approach to prenatal diagnosis reinforce one another. It also analyzes the role of taking action early on and evaluating the lives of sick or disabled people in this process. In conclusion, I engage a more general discussion about what I suggest calling a "quality life
Biopower · Eugenics · Fetus · Health care · Newborn screening · Political science · Pregnancy · Prenatal diagnosis · Sick child · Ethics and Legal Issues in Pediatric Healthcare · Foucault, Power, and Ethics · Law · Medicine · Psychology · Reproductive Health and Technologies · Genetics · Pediatrics
Biomedicalization
The History of the Changing Concepts of Health and Illness
Medical Uncertainty Revisited
The Discovery of Grounded Theory
Prenatal Testing and Disability Rights
The Politics of Life Itself
Disability policies and perinatal medicine
Attitudes toward abortion among parents of children with cystic fibrosis
Choosing not to choose
The best experts
Histoire de l'eugenisme en France. Les medecins et la procreation XIXe-XXe siecle
The Birth of a Genetics Policy
Why women say yes to prenatal diagnosis
Emplotting children's lives
Social welfare, genetic welfare? Boundary-work in the IVF/PGD clinic
The sociology of entrenchment
The expansion of abnormality and the biomedical norm
Dits et écrits, 1954-1988, Tome I
Enabling Disability
Motherhood and the Obfuscation of Medical Knowledge
Screening
Health-related quality of life and the transformation of symptoms
Normality, risk and the future
Medical Technologies and the Dream of the Perfect Newborn
| Unique citing works | 1 |
|---|---|
| Citations per year | 0,1 |
| Citation span | 2016 - 2016 (1) |
| Citation velocity | historical |
| Highly cited | No |
| Citation types | Neutral: 1 |