Medical ethics:dealing with families and communities affected by genetic disease

Medical ethics:dealing with families and communities affected by genetic disease

Rajab, Anna
Mohammed, Ali Jaffer
El-Hazmi, Mohsen
Raeburn, Arelene
Raeburn, Sandy
Modell, Bernadette

11/20/07

English

20071120

The Omani population has an astoundingly high number of neonates born with congenital anomalies, deformations, and chromosomal abnormalities. Recent advancements in health care have ensured that the number of affected children who survive infancy has increased significantly. However, most genetic diseases do not have a cure. This makes a significant impact on affected families and includes economic as well as ethical, psychological, and social issues. Families tend to be stressed, and may even be depressed, face financial difficulties necessitated by the increasing medical expenditures, carry a sense of inadequacy and misfortune, and face social disadvantages and stigmatization, forcing a number of families to hide their affected members. Programs targeting the efficient prevention and management of these genetic diseases, therefore, would require certain adjustments in the health care delivery. High ethical principles need to be maintained and promoted. Genetic counseling can be used very effectively, especially since most parents tend to be extremely receptive to counseling, and readily accept family screening for carrier status. Reassuring carriers is also equally important. Educational efforts need to concentrate on making people aware that a genetic disease is not a form of punishment. Important for this is the development and promotion of a new genetic vocabulary that avoids the use of negative connotations for words. Medical personnel need to be trained to empathize with the patients, and to adopt a sensitive approach while dealing with patients and their families. In rural settings, the privacy of the family also needs to be maintained. Psychological rehabilitation of affected patients and their families is another important issue. Finally, an integrated approach needs to be adopted for the efficient management of genetic disorders, which involves health care institutions, social agencies, and community support groups.

2.1

2.1;15.2;15.1

clinical genetics--[pri];genetic disorders--[pri];medical ethics--[pri]

chromosome abnormalities;congenital disorders;empathy;genetic carriers;genetic counseling;health care delivery;health education;health personnel;health promotion;Muslims;psychological stress;stigmatization

Oman--[pri]

Second Pan Arab Human Genetics Conference. Ethical Perspectives on Genetic Applications in the Arab World;Dubai, UAE;2007 November 20-22;Center for Arab Genomic Studies, Dubai Islamic Affairs and Charitable Activities Department

Conference Proceedings:Second Pan Arab Human Genetics Conference. Ethical Perspectives of Genetic Applications in the Arab World2007 November 20-22:6 p.

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