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Non-professionals' evaluations of gene therapy ethics
Jackie Leach Scully1, Christine Rippberger, Christoph Rehmann-Sutter
1Arbeitsstelle für Ethik in den Biowissenschaften, Institut für Geschichte und Epistemologie der Medizin, Universität Basel, Schönbeinstrasse 20, 4056 Basel, Switzerland. scully@bluewin.ch
Social Science & Medicine (1982)
|February 5, 2004
Summary
Patients and medical professionals differ significantly in their views on somatic gene therapy (SGT). Patients often question SGT effectiveness and identity concerns, unlike healthcare providers who focus on therapeutic imperatives.
Area of Science:
- Bioethics
- Medical Sociology
- Genetics and Public Policy
Background:
- Limited research exists on non-professionals' moral reasoning regarding genetic technologies.
- Existing ethical discussions predominantly focus on clinicians and researchers, overlooking patient perspectives.
Purpose of the Study:
- To compare the moral evaluations of somatic gene therapy (SGT) between potential consumers (patients) and providers (medical professionals).
- To identify and analyze the differing ethical viewpoints influencing public and professional debates on gene therapy.
Main Methods:
- Comparative analysis of moral evaluations concerning somatic gene therapy.
- Inclusion of perspectives from both patients considering SGT and medical professionals providing it.
Main Results:
- Medical professionals view SGT acceptability through a therapeutic imperative, separating identity from illness.
- Patients often question SGT effectiveness and may perceive genetic interventions as altering personal identity.
- Significant divergence exists between professional and patient ethical evaluations of SGT.
Conclusions:
- Patient perspectives on somatic gene therapy differ substantially from those of medical professionals.
- Ethical debates on gene therapy must incorporate the views of potential consumers to ensure comprehensive consideration.
- Understanding these divergent moral frameworks is crucial for public and professional discourse on genetic interventions.