title: Public Perceptions of Ethical, Legal and Social Implications of Pre-implantation Genetic Diagnosis (PGD) in Malaysia.
abstract: 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.
authors.affiliation: Pusat Citra UKM, Universiti Kebangsaan Malaysia, 43600, Bangi, Selangor, Malaysia. olesen.angelina@ukm.edu.my.
authors.forename: Angelina P
authors.initials: AP
authors.lastname: Olesen
authors.affiliation: Faculty of Science (Department of Science and Technology), University of Malaya, 50460, Kuala Lumpur, Malaysia.
authors.forename: Siti Nurani
authors.initials: SN
authors.lastname: Mohd Nor
authors.affiliation: Pusat Citra UKM, Universiti Kebangsaan Malaysia, 43600, Bangi, Selangor, Malaysia.
authors.forename: Latifah
authors.initials: L
authors.lastname: Amin
authors.affiliation: Faculty of Law, Universiti Kebangsaan Malaysia, 43600, Bangi, Selangor, Malaysia.
authors.forename: Anisah
authors.initials: A
authors.lastname: Che Ngah
mesh_terms: D001290:Attitude; D006233:Persons with Disabilities; D034462:Dissent and Disputes; D005260:Female; D005820:Genetic Testing / Q000941:ethics / Q000331:legislation & jurisprudence; D033161:Government Regulation; D006801:Humans; D008296:Malaysia; D008297:Male; D009014:Morals; D010465:Perception; D011247:Pregnancy; D019836:Preimplantation Diagnosis; D011639:Public Opinion; D011640:Public Policy; D012743:Sex Preselection / Q000941:ethics / Q000331:legislation & jurisprudence; D012935:Social Justice; D012945:Social Values; D011795:Surveys and Questionnaires
keywords: Ethical concerns; Legal aspects; Pre-implantation genetic diagnosis; Public perception; Slippery slope argument; Social pressure