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Professionally responsible management of the ethical and social challenges of antenatal screening and diagnosis of β-thalassemia in a high-risk population.
- Source :
-
Journal of perinatal medicine [J Perinat Med] 2021 Mar 16; Vol. 49 (7), pp. 847-852. Date of Electronic Publication: 2021 Mar 16 (Print Publication: 2021). - Publication Year :
- 2021
-
Abstract
- Thalassemias are among the most frequent genetic disorders worldwide. They are an important social and economic strain in high-risk populations. The benefit of β-thalassemia screening programs is growing evident but the capacity to diagnose fetal β-thalassemia exceeds the treatment possibilities and even when treatment before birth becomes feasible, difficult decisions about the relative risks will remain. This paper can be of practical and ethically justified aid when counseling women about screening, diagnosis, and treatment of β-thalassemia. It takes in consideration various social challenges, medical issues such as antenatal screening, preimplantation genetic diagnosis, prenatal diagnosis, non-invasive prenatal testing and prenatal therapy. We also describe the Sardinian experience in applying and promoting high-risk population screening and diagnosis programs and future trends in the management of β-thalassemia.<br /> (© 2021 Walter de Gruyter GmbH, Berlin/Boston.)
- Subjects :
- Directive Counseling ethics
Female
Fetal Therapies ethics
Fetal Therapies methods
Genetic Testing ethics
Humans
Italy
Patient Participation
Pregnancy
Prenatal Diagnosis methods
Risk
Socioeconomic Factors
beta-Thalassemia genetics
beta-Thalassemia therapy
Patient Acceptance of Health Care
Prenatal Diagnosis ethics
Professional-Patient Relations ethics
Social Determinants of Health
beta-Thalassemia diagnosis
Subjects
Details
- Language :
- English
- ISSN :
- 1619-3997
- Volume :
- 49
- Issue :
- 7
- Database :
- MEDLINE
- Journal :
- Journal of perinatal medicine
- Publication Type :
- Academic Journal
- Accession number :
- 33721919
- Full Text :
- https://doi.org/10.1515/jpm-2021-0021