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Ethical dilemmas in Gaucher disease
Thesis (MA)--Stellenbosch University, 2017.
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| Format: | Thesis |
| Language: | en_ZA |
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Stellenbosch : Stellenbosch University
2017
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| _version_ | 1867613858585116672 |
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| access_status_str | Open Access |
| author | Jordaan, Beatrice |
| author2 | Kruger, Mariana |
| author_browse | Jordaan, Beatrice Kruger, Mariana |
| author_facet | Kruger, Mariana Jordaan, Beatrice |
| author_sort | Jordaan, Beatrice |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (MA)--Stellenbosch University, 2017. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/101388 |
| institution | Stellenbosch University (South Africa) |
| language | en_ZA |
| last_indexed | 2026-06-10T12:42:49.487Z |
| license_str | Other — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from SUNScholar — Stellenbosch University Repository |
| publishDate | 2017 |
| publishDateRange | 2017 |
| publishDateSort | 2017 |
| publisher | Stellenbosch : Stellenbosch University |
| publisherStr | Stellenbosch : Stellenbosch University |
| record_format | dspace |
| source_str | SUNScholar — Stellenbosch University Repository |
| spelling | oai:scholar.sun.ac.za:10019.1/101388 Ethical dilemmas in Gaucher disease Jordaan, Beatrice Kruger, Mariana Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Philosophy. Dilemmas, Ethical Gaucher's disease Genetic disorders UCTD Thesis (MA)--Stellenbosch University, 2017. ENGLISH ABSTRACT: Gaucher disease (GD) is a rare and chronic, genetic disorder which presents immensely challenging ethical dilemmas for patients and families. Important is the high-cost, high-benefit, but low volume treatment for Gaucher disease, which creates incessant resource allocation dilemmas for healthcare professionals and policy makers and lack of access to care for patients. Apart from expenditure, Gaucher disease provokes numerous other ethical dilemmas including genetic screening, disclosure of genetic information and abortion. These issues pose important social and ethical challenges to the discipline of biomedical ethics. This study seeks to interrogate some of these burning ethical dilemmas. By means of a fictional biomedical ethics case report which deals with a pregnant patient subsequently diagnosed with the rare Gaucher disease, it simulates and highlights some of the numerous ethical dilemmas that a pregnant Type 1 Gaucher disease patient may have to ultimately contend with. This study will attempt to illuminate ideas of ring fencing resources for patients with rare or orphan diseases in a resource restricted developing country like South Africa. It will also attempt to provide some guidance when dealing with some of the other burning ethical issues related to Gaucher disease, which includes genetic screening, disclosure of genetic information and abortion. AFRIKAANSE OPSOMMING: Gaucher siekte (GS) is a seldsame en kroniese genetiese siektetoestand wat uiters uitdagende etiese dilemmas vir pasiënte en hul families kan veroorsaak. Van besondere belang vir pasiënte, lede van die mediese professie, sowel as beleidskeppers, is die hoë koste, hoë voordeel, maar lae volume behandeling vir Gaucher siekte wat onvermydelike dilemmas veral met betrekking tot veral die toekenning van finansiële hulpbronne kan veroorsaak. Bo-en-behalwe dié uitgawes, ontketen Gaucher siekte verskeie ander etiese dilemmas, insluitend genetiese- toetsing en skandering, die bekendmaking van genetiese inligting, asook aborsie. Hierdie dilemmas kan belangrike sosiale en etiese uitdagings vir die vakgebied biomediese etiek teweegbring. Die tesis ondersoek sommige van die mees algemene etiese dilemmas. Deur middel van ‘n fiktiewe biomediese en etiese gevallestudie met betrekking tot ‘n swanger pasiënt gediagnoseer met die seldsame Gaucher siekte, word verskeie etiese dilemmas, waarmee ‘n swanger pasiënt, wat gediagnoseer is met tipe 1 Gaucher siekte, moontlik gekonfronteer kan word, aangeraak. Hierdie studie poog om, veral in ‘n ontwikkelende land soos Suid-Afrika met beperkte hulpbronne , nuwe idees uit te lig wat moontlik finansiële bronne beskikbaar kan stel vir pasiënte met seldsame of wees siektetoestande. Die studie sal ook poog om verdere riglyne te verskaf aangaande ander kwellende etiese dilemmas wat moontlik mag gepaardgaan met Gaucher siekte soos genetiese toetsing, die bekendmaking van genetiese inligting, asook aborsie. Masters 2017-02-13T12:46:07Z 2017-03-29T20:55:11Z 2017-12-31T03:00:09Z 2017-03 Thesis http://hdl.handle.net/10019.1/101388 en_ZA Stellenbosch University 94 pages application/pdf application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | Dilemmas, Ethical Gaucher's disease Genetic disorders UCTD Jordaan, Beatrice Ethical dilemmas in Gaucher disease |
| title | Ethical dilemmas in Gaucher disease |
| title_full | Ethical dilemmas in Gaucher disease |
| title_fullStr | Ethical dilemmas in Gaucher disease |
| title_full_unstemmed | Ethical dilemmas in Gaucher disease |
| title_short | Ethical dilemmas in Gaucher disease |
| title_sort | ethical dilemmas in gaucher disease |
| topic | Dilemmas, Ethical Gaucher's disease Genetic disorders UCTD |
| url | http://hdl.handle.net/10019.1/101388 |
| work_keys_str_mv | AT jordaanbeatrice ethicaldilemmasingaucherdisease |