ATTITUDES TOWARDS GENETIC DIAGNOSIS IN PAKISTAN: A SURVEY OF MEDICAL AND LEGAL COMMUNITIES AND PARENTS OF THALASSEMIC CHILDREN
Authors: Ahmed I. Gilani, Atif S.Jadoon,Rabia Qaiser, Sana Nasim,Riffat Meraj, Nosheen Nasir, Fizza F. Naqvi, Zafar Latif, Muhammad A. Memon, Esme V. Menezes, Imran Malik, Muhammad Z. Memon,Syed F. Kazim b Usman Ahmad
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.