Jennifer Drevin1, Dag Nyholm2, Håkan Widner3, Trinette Van Vliet3, Jennifer Viberg Johansson4,5, Elena Jiltsova2, Mats Hansson6. 1. Centre for Research Ethics and Bioethics, Uppsala University, Box 564, 751 22, Uppsala, Sweden. Jennifer.drevin@crb.uu.se. 2. Department of Medical Sciences, Uppsala University Hospital, Uppsala University, 751 85, Uppsala, Sweden. 3. Neurology Clinic, Skåne University Hospital, 221 85, Lund, Sweden. 4. Centre for Research Ethics and Bioethics, Uppsala University, Box 564, 751 22, Uppsala, Sweden. 5. The Institute for Future Studies, Holländargatan 13, 111 36, Stockholm, Sweden. 6. Centre for Research Ethics and Bioethics, Uppsala University, Box 564, 751 22, Uppsala, Sweden. mats.hansson@crb.uu.se.
Abstract
BACKGROUND: Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson's disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending. OBJECTIVE: To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion. METHODS: Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities. RESULTS: The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.
BACKGROUND: Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson's disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending. OBJECTIVE: To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion. METHODS: Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities. RESULTS: The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.
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