Genetic screening and haemoglobinopathies: Ethics, politics and practice

The increasing availability of information on the human genetic makeup presents both individuals and society with difficult decisions. This paper explores the ethical and practical issues raised by genetic screening for sickle cell and thalassaemia major, by examining the emerging tension between al...

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Bibliographic Details
Published in:Social science & medicine (1982) 1998-02, Vol.46 (3), p.445-458
Main Authors: Atkin, Karl, Ahmad, Waqar I.U.
Format: Article
Language:English
Subjects:
Anemia, Sickle Cell - genetics
Anemia, Sickle Cell - physiopathology
Anemia, Sickle Cell - prevention & control
beta-Thalassemia - genetics
beta-Thalassemia - physiopathology
beta-Thalassemia - prevention & control
Bioethics
Biological and medical sciences
Blood
Blood disorders
Congenital Illness
Decision making
Delivery Systems
Ethical aspects
Ethics, Medical
Eugenics
Genetic Counseling
Genetic screening
genetic screening sickle cell disorders thalassaemia
Genetic Testing - organization & administration
Genetic Testing - psychology
Genetics
Health care
Health policy
Human genetics
Humans
Medical Decision Making
Medical ethics
Medical sciences
Medical screening
Patients
Politics
Prevention and actions
Psychological Factors
Public health. Hygiene
Public health. Hygiene-occupational medicine
Sickle cell anemia
sickle cell disorders
Specific populations (family, woman, child, elderly...)
Tests
thalassaemia
United Kingdom
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Summary:The increasing availability of information on the human genetic makeup presents both individuals and society with difficult decisions. This paper explores the ethical and practical issues raised by genetic screening for sickle cell and thalassaemia major, by examining the emerging tension between allowing people to make informed choices, on the basis of genetic information, and prevention of haemoglobinopathies. Within this broad context, the paper also explores the more practical issues of providing genetic screening for haemoglobinopathies, such as the meaning of counselling and screening for the general population; the psychological and social implications for people identified as carriers; and the organisation and delivery of services. It concludes that screening is not always informed by a commitment to informed decision making.
ISSN:0277-9536
1873-5347
DOI:10.1016/S0277-9536(97)00189-5