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Autonomy and bioethics in fan responses to Orphan Black.

ABSTRACT: Viewers' responses to Orphan Black (2013-2017), a popular, genetics-themed sci-fi television series, reveal much about public understanding of the ethical challenges associated with genetic science. In this article, we assess how fans of Orphan Black process the bioethical themes that are prominent in the show through an analysis of 182 viewer-created blog posts. Using a mixed methods approach, our findings reveal that Orphan Black's fans distill the essence of the show down to its characters' fight for autonomy. Furthermore, fan blogs reveal two notable pathways through which this bioethical principle is explored: gender and reproduction. Viewers draw striking connections between the moral problems they observe on screen in Orphan Black and those they see in the real world-both today and in a possible future-particularly as those problems affect women. While existing scholarship acknowledges these themes in the show itself, our approach demonstrates science fiction fans' active participation in meaning-making and bioethical reasoning and offers a novel approach to studying fan-generated content for public understanding of science research.

SUBMITTER: Eilmus A

PROVIDER: S-EPMC10832314 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature

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Autonomy and bioethics in fan responses to Orphan Black.

Eilmus Ayden A Bradley Avery A Clayton Jay J

Public understanding of science (Bristol, England) 20230810 2

Viewers' responses to Orphan Black (2013-2017), a popular, genetics-themed sci-fi television series, reveal much about public understanding of the ethical challenges associated with genetic science. In this article, we assess how fans of Orphan Black process the bioethical themes that are prominent in the show through an analysis of 182 viewer-created blog posts. Using a mixed methods approach, our findings reveal that Orphan Black's fans distill the essence of the show down ...[more]

PMID: 37586019

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Project description:According to global annual estimates hunger/malnutrition is the major cause of death (36 of 62 million). Cardiovascular diseases and cancer (5.44 of 13.43 million) are the major causes of death in developed countries, while lower respiratory tract infections, human immunodeficiency virus infection/acquired immunodeficiency syndrome, diarrhoeal disease, malaria and tuberculosis (10.88 of 27.12 million) are the major causes of death in developing countries with more than 70% of deaths occurring in children. The majority of approximately 800 million people with other rare diseases, including 100000 children born with thalassaemia annually receive no treatment. There are major ethical dilemmas in dealing with global health issues such as poverty and the treatment of orphan and rare diseases. Of approximately 50000 drugs about 10% are orphan drugs, with annual sales of the latter approaching 100 billion USD. In comparison, the annual revenue in 2009 from the top 12 pharmaceutical companies in Western countries was 445 billion USD and the top drug, atorvastatin, reached 100 billion USD. In the same year, the total government expenditure for health in the developing countries was 410 billion USD with only 6%-7% having been received as aid from developed countries. Drugs cost the National Health Service in the United Kingdom more than 20 billion USD or 10% of the annual health budget. Uncontrollable drug prices and marketing policies affect global health budgets, clinical practice, patient safety and survival. Fines of 5.3 billion USD were imposed on two pharmaceutical companies in the United States, the regulatory authority in France was replaced and clinicians were charged with bribery in order to overcome recent illegal practises affecting patient care. High expenditure for drug development is mainly related to marketing costs. However, only 2 million USD was spent developing the drug deferiprone (L1) for thalassaemia up to the stage of multicentre clinical trials. The criteria for drug development, price levels and use needs to be readdressed to improve drug safety and minimise costs. New global health policies based on cheaper drugs can help the treatment of many categories of orphan and rare diseases and millions of orphan patients in developing and developed countries.

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Autonomy and bioethics in fan responses to Orphan Black.

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Autonomy and bioethics in fan responses to <i>Orphan Black</i>.

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