Challenges Faced by Behavioral Genetic Studies: Researchers Perspective from the MENA Region

Author:

Khabour Omar F.1,Abu-Siniyeh Ahmed A.2,Alzoubi Karem H.3,Al-Sheyab Nihaya A.4

Affiliation:

1. Department of Medical Laboratory Sciences, Faculty of Applied Medical Sciences, Jordan University of Science and Technology, Irbid,Jordan

2. Department of Clinical Laboratory Sciences, Faculty of Science, University of Jordan, Amman,Jordan

3. Department of Pharmacy Practice and Pharmacotherapeutics, University of Sharjah, Sharjah,United Arab Emirates

4. Faculty of Nursing, Maternal and Child Health Department, Jordan University of Science and Technology, Irbid, 22110,Jordan

Abstract

Background: Behavioral genetic studies are important for the understanding of the contribution of genetic variations to human behavior. However, such studies might be associated with some ethical concerns. Methods: In the current study, ethical challenges related to studies of genetic variations contributing to human behavior were examined among researchers. To achieve the study purpose, the Middle East and North Africa (MENA) region researchers were taken as an example, where the aftermentioned ethical challenges were discussed among a group of researchers, who were the participants of an online forum. Discussions and responses of the participants were monitored and were later qualitatively analyzed. Results: Discussions revealed that several ethical challenges, including subjects’ recruitment, the difficulty of obtaining informed consents, and issues of privacy and confidentiality of obtained data as information leakage, in this case, will lead to social stigma and isolation of the participants and their immediate family members. Jordanian social and cultural norms, faith, and the tribal nature of the population were raised as a major challenge that might face conducting behavioral genetic studies in the Arab populations of the MENA. The lack of regulation related to the conduction of genetic studies, misunderstanding, and misuse of genetic information are other challenges. A full explanation of genetic research and the current and future possible benefits/risks of such research could be potential solutions. Conclusion: In conclusion, the MENA populations are tackled with major challenges in relation to conducting research studies in genetics/antisocial behavior field/s. Establishment of guidelines related to genetic studies, capacity building, increasing public awareness about the importance of genetic testing, and enhancing responsible conduct of research will facilitate the conduct of such sensitive studies in the future in the region.

Funder

Fogarty International Center of the U.S. National Institutes of Health

Publisher

Bentham Science Publishers Ltd.

Subject

Genetics (clinical),Genetics

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