Abstract
While pre-implantation genetic diagnosis (PGD) is available and legal in Malaysia, there is an ongoing controversy debate about its use. There are few studies available on individuals’ attitudes toward PGD, particularly among those who have a genetic disease, or whose children have a genetic disease. To the best of our knowledge, this is, in fact, the first study of its kind in Malaysia. We conducted in-depth interviews, using semi-structured questionnaires, with seven selected potential PGD users regarding their knowledge, attitudes and decisions relating to the use PGD. The criteria for selecting potential PGD users were that they or their children had a genetic disease, and they desired to have another child who would be free of genetic disease. All participants had heard of PGD and five of them were considering its use. The participants’ attitudes toward PGD were based on several different considerations that were influenced by various factors. These included: the benefit-risk balance of PGD, personal experiences of having a genetic disease, religious beliefs, personal values and cost. The study’s findings suggest that the selected Malaysian participants, as potential PGD users, were supportive but cautious regarding the use of PGD for medical purposes, particularly in relation to others whose experiences were similar. More broadly, the paper highlights the link between the participants’ personal experiences and their beliefs regarding the appropriateness, for others, of individual decision-making on PGD, which has not been revealed by previous studies.
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Acknowledgments
The results of this study come from the research project, Ethical Implications of Pre-implantation Genetic Diagnosis (PGD): A qualitative study on three selected groups in Malaysia’, supported by post-graduate Grant (University of Malaya) [UM.TNC2/IPPP/UPGP/GRANT (PPP)/PS385/2010B] and post-doctorate researcher Grant (UKM) [FRGS/2/2013//SS112/UKM/02/2]. We thank all participants in this study for their time and efforts to make time for the interviews session.
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Olesen, A.P., Nor, S.N.M. & Amin, L. Attitudes Toward Pre-implantation Genetic Diagnosis (PGD) for Genetic Disorders Among Potential Users in Malaysia. Sci Eng Ethics 22, 133–146 (2016). https://doi.org/10.1007/s11948-015-9639-z
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DOI: https://doi.org/10.1007/s11948-015-9639-z