The Impact of Genetic Diseases on Jordanians: Strategies Towards Prevention

El‐Shanti, Hatem

doi:10.1155/s1110724301000092

Cited by 10 publications

(9 citation statements)

References 10 publications

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“…The number of genetic studies from Jordan increased within the last two decades. This could be due to increased research capacity; the prevalence of different genetic diseases, which were reported to be high among Jordanians as a result of consanguinity and high birth rate; [15][16][17] and having a diverse population that contains many ethnic groups and minorities, 18,19 along with the significant jumps in the census due to waves of immigration toward Jordanian territories from surrounding high tension countries. This increase in the number of genetic studies in Jordan should have been accompanied with an increase in awareness of the importance of applying ethical obligations and morals in the research process including proper informed consent process.…”

Section: Discussionmentioning

confidence: 99%

<p>Informed Consent Form Challenges for Genetic Research in Jordan</p>

Alkaraki¹,

Khabour²,

Alzoubi³

et al. 2020

JMDH

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Background: Informed consent is an obligatory requirement for research engaging human subjects. Informed consent form (ICF) should be provided for human subjects to confirm their willingness for voluntary participation in a study. Ethical and legal obligations necessitate the presence of informed consent essential items to be built into the ICF. Objective: To evaluate the content of ICFs obtained from different genetic studies accomplished in Jordan and their adherence to ethical guidelines proposed by the International Conference on Harmonization-Good Clinical Practice (ICHGCP). Methods and Measures: A total of 44 ICFs obtained from master theses and grant proposals at two major universities in Jordan were analyzed according to the good clinical practice criteria proposed by ICHGCP. ICFs were scored for the presence or absence of ICF main items/categories. Results: Results show inadequate information present in the examined ICFs. The highest information score was 17 out of 20, while the lowest score was one out of 20. The average score for all studied ICFs was 6.18±3.65. Among essential items/categories that were absent from the majority of studied ICFs were a statement about voluntary participation, confidentiality of data, compensation to study participants, risk/benefits of the study, and researchers' contact information. Conclusion: The ICFs were missing a number of required items. This could reflect inadequate knowledge about minimal informed consent requirements among Jordanian investigators highlighting the need for research ethical training in the country.

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Section: Discussionmentioning

confidence: 99%

<p>Informed Consent Form Challenges for Genetic Research in Jordan</p>

Alkaraki¹,

Khabour²,

Alzoubi³

et al. 2020

JMDH

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“…As Jordan is an Islamic Arab country, single parenthood is against Islamic law and close to non-existent (El-Shanti 2001).…”

Section: Demographic Characteristicsmentioning

confidence: 99%

“…Of the parents in the newly diagnosed group, the vast majority 66 (94AE3%) were married, 1 (1AE4%) was divorced and 3 (4AE3%) were widowed, while all parents in the second group were married (Table 1). As Jordan is an Islamic Arab country, single parenthood is against Islamic law and close to non-existent (El-Shanti 2001).…”

Section: Demographic Characteristicsmentioning

confidence: 99%

Anticipatory grieving among parents living with a child with cancer

Al-Gamal

Long

2010

Journal of Advanced Nursing

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“…Premarital testing is an important tool in detecting genetic disorders and reducing the incidence among siblings (Hesketh 2003). Genetic factors play an important role in causing genetic disorders and are classified as chromosomal abnormalities, monogenetic and multifactorial disorders (El‐Shanti 2001). Congenital conditions are occurring at a rate of 6.9% and in some regions, more than 10% of the population carried at least one gene for one of the hereditary disorders, such as thalassaemia (Hamamy & Alwan 1997).…”

Section: Background and Significancementioning

confidence: 99%