Attitudes towards Genetic Diagnosis in Pakistan: A Survey of Medical and Legal Communities and Parents of Thalassemic Children

Gilani, Ahmed; Jadoon, Atif S.; Qaiser, Rabia; Nasim, Sana; Meraj, Riffat; Nasir, Nosheen; Naqvi, Fizza; Latif, Zafar Ahmed; Memon, Muhammad Ali; Menezes, Esme V.; Malik, Imran Riaz; Memon, Muhammad Zeeshan; Kazim, Syed Faraz; Ahmad, Usman

doi:10.1159/000101755

Cited by 20 publications

(20 citation statements)

References 37 publications

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“…The acceptance rate was 90.3 % in Iran (Karimi et al 2010) and 75.2 % in Pakistan (Gilani et al 2007). Recent studies on Muslim populations revealed that education about the religion's stance on termination of pregnancy improved uptake of prenatal diagnosis and termination of pregnancies affected by thalassaemia and sickle cell anaemia (Alkuraya and Kilani 2001;Ahmed et al 2000).…”

Section: Discussionmentioning

confidence: 93%

“…Most of the successful thalassaemia preventive strategies incorporated prenatal diagnosis and selective termination of affected foetuses into their programmes. Studies addressing the acceptance of these measures have been done in Muslim-majority countries such as Iran (Karimi et al 2010), Pakistan (Gilani et al 2007), Lebanon (Zahed and Bou-dames 1997) and Saudi Arabia (Alkuraya and Kilani 2001) but are relatively scarce in Malaysia. A Malaysian survey among the general lay public documented not only a low level of knowledge about thalassaemia but it revealed that only 36.6 % of participants accepted selective termination of affected foetuses (Wong et al 2011) with the Malays less likely to accept abortion compared to the Chinese and Indians.…”

Section: Introductionmentioning

confidence: 99%

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Attitudes towards prenatal diagnosis and abortion in a multi-ethnic country: a survey among parents of children with thalassaemia major in Malaysia

et al. 2013

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Thalassaemia is a public health problem in multiethnic Malaysia which mainly affects the Malays, KadazanDusuns and Chinese. This study, the first in Malaysia, aims to evaluate the acceptability of prenatal diagnosis and abortion among Malaysian parents who have a child or children with thalassaemia major and the socio-demographic factors affecting their decision-making. A pre-structured questionnaire was distributed to parents of children with thalassaemia major. Response rate for completed surveys was 99.1 %. Out of 116 respondents, the majority (83/71.6 %) were agreeable for prenatal diagnosis, but only 33 (28.4 %) agreed to both prenatal diagnosis followed by termination of affected foetuses. Of parents who declined abortion, 77.6 % cited religious restriction as the main reason, and their religious background was a significant factor (p=0.001), with 73.4 % of Muslim participants against termination compared to 25 % of Christians and 13.3 % of Buddhists. Gender, age, highest education level and number of children affected with thalassaemia were non-significant predictors in decision-making regarding abortion. The acceptance rate for termination of foetuses with thalassaemia major in Malaysia is low especially among the Muslims due to religious non-permissibility. Therefore, scholarly deliberations among the Malaysian Muslim religious authorities that result in a supportive stance in this issue may contribute to a more successful prevention programme.

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Section: Discussionmentioning

confidence: 93%

Section: Introductionmentioning

confidence: 99%

Attitudes towards prenatal diagnosis and abortion in a multi-ethnic country: a survey among parents of children with thalassaemia major in Malaysia

et al. 2013

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“…Gilani and colleagues questioned medical practitioners, lawyers, politicians and parents of children affected by thalassaemia in Pakistan, to determine people's attitudes about thalassaemia carrier screening. 47 Over 95% of the parents and 90% of the doctors supported genetic screening; however, only one-third of politicians were in favour of screening. 47 Thalassaemia screening has not yet been introduced in Sri Lanka; however, 96% of people agreed that at least one person in a marriage should undergo thalassaemia screening.…”

Section: Mandatory Screeningmentioning

confidence: 99%

“…47 Over 95% of the parents and 90% of the doctors supported genetic screening; however, only one-third of politicians were in favour of screening. 47 Thalassaemia screening has not yet been introduced in Sri Lanka; however, 96% of people agreed that at least one person in a marriage should undergo thalassaemia screening. 48 Outcomes of thalassaemia carrier screening Reduced incidence.…”

Section: Mandatory Screeningmentioning

confidence: 99%

Carrier screening for Beta-thalassaemia: a review of international practice

et al. 2010

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b-thalassaemia is one of the most common single-gene inherited conditions in the world, and thalassaemia carrier screening is the most widely performed genetic screening test, occurring in many different countries. b-thalassaemia carrier screening programmes provide a unique opportunity to compare the delivery of carrier screening programmes carried out in different cultural, religious and social contexts. This review compares the key characteristics of b-thalassaemia carrier screening programmes implemented in countries across the world so that the differences and similarities between the programmes can be assessed. The manner in which thalassaemia carrier screening programmes are structured among different populations varies greatly in several aspects, including whether the programmes are mandatory or voluntary, the education and counselling provided and whether screening is offered pre-pregnancy or antenatally. National and international guidelines make recommendations on the most appropriate ways in which genetic carrier screening programmes should be conducted; however, these recommendations are not followed in many programmes. We discuss the implications for the ethical and acceptable implementation of population carrier screening and identify a paucity of research into the outcomes of thalassaemia screening programmes, despite the fact that thalassaemia screening is so commonly conducted.

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“…Similarly, Gilani et al (2007), who investigated the attitude of medical practitioners and other stakeholders toward genetic screening for thalassemia, observed that, in 26 % of those that did not accept genetic screening, fear of discrimination and, in 30 %, individual stress was the stated reason. Other studies investigating the attitude of health care practitioners toward hemoglobinopathy screening showed a fairly positive attitude mainly predicted by subjective or social norm.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature

2012

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Recent technological developments in molecular genetics facilitate the large-scale detection of inherited genetic disorders and allow an increasing number of genetic conditions to be screened for (American College of Medical Genetics 2012). This technological evolution creates the background which makes reflection necessary about the desirability to offer community-based (preconception) carrier screening in the healthcare system. A positive attitude of potential providers is vital to the success of a screening program. Therefore, the objective of this article is to elaborate a review of the attitudes of healthcare professionals toward carrier screening. Examination of existing carrier screening programs could provide such information. The literature review will be focused on the attitudes toward carrier screening for cystic fibrosis (CF). The databases Pubmed and Web of Science, as well as the interface Google Scholar, were searched using the keywords for the period 1990-2011. Studies were selected if they were published in a peer-reviewed journal in English and described the attitudes of potential providers toward carrier screening. Eleven studies were retrieved describing the attitudes toward carrier screening for CF. In total, seven studies reported attitudes toward the best time for carrier screening; four studies described opinions toward the best setting to offer CF carrier screening; six studies investigated the willingness to be involved in a carrier screening program, and in total 11 articles reported the concerns about offering carrier screening. Ten papers described a general attitude toward carrier screening. We can conclude that health care providers state willingness to be involved in a carrier screening program, but there is need for appropriate education as well as adequate support given the time constraints already present in consultation. The prospect of an increasing number of genetic disorders for which screening becomes possible, and the potential increasing demand for such screening in the future calls for the need for further debate on the desirability of carrier screening and relevant questions such as the conditions screened, the providers involved, the information provision, and counseling.

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Attitudes towards Genetic Diagnosis in Pakistan: A Survey of Medical and Legal Communities and Parents of Thalassemic Children

Cited by 20 publications

References 37 publications

Attitudes towards prenatal diagnosis and abortion in a multi-ethnic country: a survey among parents of children with thalassaemia major in Malaysia

Attitudes towards prenatal diagnosis and abortion in a multi-ethnic country: a survey among parents of children with thalassaemia major in Malaysia

Carrier screening for Beta-thalassaemia: a review of international practice

Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature

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