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巴基斯坦对基因诊断的态度:对医学和法律界以及地中海贫血症患儿家长的一项调查。

Attitudes towards genetic diagnosis in Pakistan: a survey of medical and legal communities and parents of thalassemic children.

作者信息

Gilani Ahmed I, Jadoon Atif S, Qaiser Rabia, Nasim Sana, Meraj Riffat, Nasir Nosheen, Naqvi Fizza F, Latif Zafar, Memon Muhammad A, Menezes Esme V, Malik Imran, Memon Muhammad Z, Kazim Syed F, Ahmad Usman

机构信息

Department of Anatomy, Shifa College of Medicine, Islamabad, Pakistan.

出版信息

Community Genet. 2007;10(3):140-6. doi: 10.1159/000101755.

Abstract

OBJECTIVES

It was the aim of this study to assess the attitudes of doctors, medical students, lawyers, parliament members and parents of thalassemic children towards genetic diagnosis in Pakistan.

STUDY DESIGN

A cross-sectional descriptive survey was conducted among representative samples.

RESULTS

Five hundred and seventy doctors, 49 lawyers, 178 medical students, 89 parents of thalassemic children and 16 members of parliament (MPs) were included in the survey. The groups showed considerable difference in their attitudes towards different aspects of the issue. A large proportion (88.5%) agreed to the idea of genetic diagnostic screening, especially the parents of thalassemic patients. Premarital carrier screening was favored by 77% of the respondents. Prenatal screening was most favored by the parents of thalassemic children (94.4%). Likewise, a majority of parents of thalassemic children were in favor of abortion in case of an affected fetus. Genetic self-screening was also favored most by the parents of thalassemic patients (78.2%). Only 24% of the doctors favored making genetic screening mandatory, whereas 63% of the parents agreed to the idea.

CONCLUSION

Attitudes regarding genetic diagnosis are markedly different among various societal groups in Pakistan. The parents of the affected children strongly favor genetic screening as does the medical community, though not as strongly as the parents. The legislative groups, particularly the MPs, are reserved in their support. Genetic diagnosis can help decrease the disease burden in the future. However, it raises a number of ethical issues, which need to be addressed. It is important to educate the population about potential benefits as well as ethical dilemmas involved so that the general public is able to make the right decisions for themselves and their families.

摘要

目的

本研究旨在评估巴基斯坦医生、医科学生、律师、议员以及地中海贫血患儿家长对基因诊断的态度。

研究设计

在具有代表性的样本中开展了一项横断面描述性调查。

结果

570名医生、49名律师、178名医科学生、89名地中海贫血患儿家长以及16名议员参与了此次调查。这些群体在对该问题不同方面的态度上存在显著差异。很大一部分人(88.5%)赞同基因诊断筛查的想法,尤其是地中海贫血患者的家长。77%的受访者支持婚前携带者筛查。地中海贫血患儿的家长最支持产前筛查(94.4%)。同样,大多数地中海贫血患儿的家长支持在胎儿受影响的情况下进行堕胎。地中海贫血患者的家长也最支持基因自我筛查(78.2%)。只有24%的医生支持强制进行基因筛查,而63%的家长赞同这一想法。

结论

在巴基斯坦,不同社会群体对基因诊断的态度存在显著差异。患病儿童的家长和医学界一样强烈支持基因筛查,尽管不如家长那么强烈。立法群体,尤其是议员,支持态度较为保留。基因诊断有助于在未来减轻疾病负担。然而,它引发了一些伦理问题,需要加以解决。对公众进行关于潜在益处以及相关伦理困境的教育非常重要,以便公众能够为自己和家人做出正确的决定。

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