Pusat Citra UKM, Universiti Kebangsaan Malaysia, 43600, Bangi, Selangor, Malaysia.
Faculty of Science (Department of Science and Technology), University of Malaya, 50460, Kuala Lumpur, Malaysia.
Sci Eng Ethics. 2017 Dec;23(6):1563-1580. doi: 10.1007/s11948-016-9857-z. Epub 2016 Dec 19.
Pre-implantation genetic diagnosis (PGD) became well known in Malaysia after the birth of the first Malaysian 'designer baby', Yau Tak in 2004. Two years later, the Malaysian Medical Council implemented the first and only regulation on the use of Pre-implantation Genetic Diagnosis in this country. The birth of Yau Tak triggered a public outcry because PGD was used for non-medical sex selection thus, raising concerns about PGD and its implications for the society. This study aims to explore participants' perceptions of the future implications of PGD for the Malaysian society. We conducted in-depth interviews with 21 participants over a period of one year, using a semi-structured questionnaire. Findings reveal that responses varied substantially among the participants; there was a broad acceptance as well as rejection of PGD. Contentious ethical, legal and social issues of PGD were raised during the discussions, including intolerance to and discrimination against people with genetic disabilities; societal pressure and the 'slippery slope' of PGD were raised during the discussions. This study also highlights participants' legal standpoint, and major issues regarding PGD in relation to the accuracy of diagnosis. At the social policy level, considerations are given to access as well as the impact of this technology on families, women and physicians. Given these different perceptions of the use of PGD, and its implications and conflicts, policies and regulations of the use of PGD have to be dealt with on a case-by-case basis while taking into consideration of the risk-benefit balance, since its application will impact the lives of so many people in the society.
胚胎植入前遗传学诊断(PGD)在 2004 年马来西亚首例“设计婴儿”姚达的诞生后在马来西亚广为人知。两年后,马来西亚医学理事会在该国实施了第一个也是唯一一个关于使用胚胎植入前遗传学诊断的规定。姚达的诞生引发了公众的强烈抗议,因为 PGD 被用于非医疗性别选择,从而引发了对 PGD 及其对社会影响的担忧。本研究旨在探讨参与者对 PGD 对马来西亚社会未来影响的看法。我们在一年的时间里对 21 名参与者进行了深入访谈,使用半结构化问卷。研究结果表明,参与者的反应差异很大;有广泛的接受和拒绝 PGD。在讨论中提出了 PGD 的有争议的伦理、法律和社会问题,包括对遗传残疾者的不容忍和歧视;在讨论中提出了社会压力和 PGD 的“滑坡”。本研究还强调了参与者的法律立场,以及与 PGD 的准确性相关的主要问题。在社会政策层面,考虑了获取以及这项技术对家庭、妇女和医生的影响。鉴于对 PGD 使用的不同看法,及其影响和冲突,必须根据具体情况处理 PGD 使用的政策和法规,同时考虑到风险效益平衡,因为其应用将影响社会上许多人的生活。