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

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

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)140-146
Number of pages7
JournalCommunity Genetics
Volume10
Issue number3
DOIs
StatePublished - Jun 2007
Externally publishedYes

Fingerprint

Pakistan
Parents
Genetic Testing
Lawyers
Medical Students
Surveys and Questionnaires
Prenatal Diagnosis
Ethics
Fetus
Cross-Sectional Studies

Keywords

  • β-Thalassemia
  • Abortion
  • Consanguinity
  • Genetic screening

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Attitudes towards genetic diagnosis in Pakistan : A survey of medical and legal communities and parents of thalassemic children. / Gilani, Ahmed I.; Jadoon, Atif S.; Qaiser, Rabia; Nasim, Sana; Meraj, Riffat; Nasir, Nosheen; Naqvi, Fizza; Latif, Zafar; Memon, Muhammad A.; Menezes, Esme V.; Malik, Imran; Memon, Muhammad Z.; Kazim, Syed F.; Ahmad, Usman.

In: Community Genetics, Vol. 10, No. 3, 06.2007, p. 140-146.

Research output: Contribution to journalArticle

Gilani, AI, Jadoon, AS, Qaiser, R, Nasim, S, Meraj, R, Nasir, N, Naqvi, F, Latif, Z, Memon, MA, Menezes, EV, Malik, I, Memon, MZ, Kazim, SF & Ahmad, U 2007, 'Attitudes towards genetic diagnosis in Pakistan: A survey of medical and legal communities and parents of thalassemic children', Community Genetics, vol. 10, no. 3, pp. 140-146. https://doi.org/10.1159/000101755
Gilani, Ahmed I. ; Jadoon, Atif S. ; Qaiser, Rabia ; Nasim, Sana ; Meraj, Riffat ; Nasir, Nosheen ; Naqvi, Fizza ; Latif, Zafar ; Memon, Muhammad A. ; Menezes, Esme V. ; Malik, Imran ; Memon, Muhammad Z. ; Kazim, Syed F. ; Ahmad, Usman. / Attitudes towards genetic diagnosis in Pakistan : A survey of medical and legal communities and parents of thalassemic children. In: Community Genetics. 2007 ; Vol. 10, No. 3. pp. 140-146.
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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.",
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AU - Nasir, Nosheen

AU - Naqvi, Fizza

AU - Latif, Zafar

AU - Memon, Muhammad A.

AU - Menezes, Esme V.

AU - Malik, Imran

AU - Memon, Muhammad Z.

AU - Kazim, Syed F.

AU - Ahmad, Usman

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