Khabour Omar F, Abu-Siniyeh Ahmed A, Alzoubi Karem H, Al-Sheyab Nihaya A
Department of Medical Laboratory Sciences, Faculty of Applied Medical Sciences, Jordan University of Science and Technology, Irbid, Jordan.
Department of Clinical Laboratory Sciences, Faculty of Science, The University of Jordan, Amman, Jordan.
Curr Genomics. 2021 Dec 31;22(7):550-556. doi: 10.2174/1389202923666211216162141.
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.
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 after- mentioned 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.
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.
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.
行为遗传学研究对于理解基因变异对人类行为的影响至关重要。然而，此类研究可能会引发一些伦理问题。
在本研究中，我们调查了研究人员中与基因变异对人类行为影响相关的伦理挑战。为实现研究目的，以中东和北非（MENA）地区的研究人员为例，在一个在线论坛的一组研究人员参与者中讨论了上述伦理挑战。对参与者的讨论和回复进行了监测，并随后进行了定性分析。
讨论表明，包括受试者招募、获得知情同意的困难以及所获数据的隐私和保密问题（如信息泄露）等若干伦理挑战，在这种情况下，将导致参与者及其直系亲属遭受社会污名化和孤立。约旦的社会文化规范、信仰以及人口的部落性质被提出是在中东和北非阿拉伯人群中开展行为遗传学研究可能面临的主要挑战。与基因研究开展相关的监管缺失、对基因信息的误解和滥用是其他挑战。对基因研究以及此类研究当前和未来可能的益处/风险进行充分解释可能是潜在的解决方案。
总之，中东和北非人群在遗传学/反社会行为领域开展研究面临重大挑战。制定与基因研究相关的指导方针、能力建设、提高公众对基因检测重要性的认识以及加强负责任的研究行为，将有助于该地区未来开展此类敏感研究。
