Pre-implantation genetic diagnosis 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. (shrink)

The Malaysian government recognises the potential contribution of biotechnology to the national economy. However, ongoing controversy persists regarding its ethical status and no specific ethical guidelines have been published relating to its use. In developing such guidelines, it is important to identify the underlying principles that are acceptable to Malaysian society. This paper discusses the process of determining relevant secular and Islamic ethical principles and establishing their similarities before harmonising them. To achieve this, a series of focus group discussions were (...) conducted with 23 knowledge experts representing various stakeholders in the biotechnology community. Notably, several principles between the secular and Islamic perspectives are indirectly or directly similar. All the experts agreed with the predominant six ethical principles of secular and Islamic philosophy and their importance and relevance in modern biotechnology. These are beneficence and non-maleficence as the main or overarching principles, the preservation of religious and moral values, the preservation of the intellect and the mind, the protection of human safety, the protection of future generations, and protection of the environment and biological diversity. Several adjustments were made to the terminologies and definitions of these six principles to formulate acceptable guiding principles for the ethics of modern biotechnology in Malaysia. These can then be adopted as core values to underpin future national guidelines on modern biotechnology ethics. These principles will be particularly important in guiding the policy makers, enforcers, industries and researchers to streamline their activities. In so doing, modern biotechnology and its products can be properly managed without jeopardising the interests of the Muslim community as well as the general public. Importantly, they are expansive and inclusive enough to embrace the religious sensitivity of diverse quarters of Malaysia. (shrink)

Pre-implantation genetic diagnosis 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. (shrink)