Attitudes Toward Pre-implantation Genetic Diagnosis (PGD) for Genetic Disorders Among Potential Users in Malaysia

TitleAttitudes Toward Pre-implantation Genetic Diagnosis (PGD) for Genetic Disorders Among Potential Users in Malaysia
Publication TypeJournal Article
Year of Publication2016
AuthorsOlesen, A, Nor, S, Amin, L
JournalScience & Engineering Ethics
Volume22
Issue1
Pagination133-146
Date Published2016
Publication Languageeng
ISBN Number13533452
KeywordsGenetic , MALAYSIA , Medical , personal , playing , pre-implantation , PREIMPLANTATION , Reproductive
AbstractWhile 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. 
NotesOlesen, Angelina 1; Email Address: olesen.angelina@ukm.edu.my Nor, Siti; Email Address: sitinuraninor@um.edu.my Amin, Latifah 2; Email Address: nilam@ukm.my; Affiliation: 1: Pusat Citra Universiti, Universiti Kebangsaan Malaysia, 43600 Bangi Malaysia 2: Pusat Citra UKM, Universiti Kebangsaan Malaysia, 43600 Bangi Malaysia; Source Info: Feb2016, Vol. 22 Issue 1, p133; Subject Term: PREIMPLANTATION genetic diagnosis; Subject Term: GENETIC disorders in children; Subject Term: MEDICAL decision making; Subject Term: REPRODUCTIVE rights; Subject Term: MALAYSIA; Author-Supplied Keyword: Malaysia; Author-Supplied Keyword: Personal experiences; Author-Supplied Keyword: Playing God; Author-Supplied Keyword: Pre-implantation genetic diagnosis (PGD); Author-Supplied Keyword: Reproductive rights; Number of Pages: 14p; Document Type: Article
DOI10.1007/s11948-015-9639-z.

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