'You don't make genetic test decisions from one day to the next'--using time to preserve moral space |
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Authors: | Scully Jackie Leach Porz Rouven Rehmann-Sutter Christoph |
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Institution: | School of Geography, Politics and Sociology, Newcastle University, 5th floor Claremont Bridge, Claremont Road, Newcastle upon Tyne NE1 7RU, United Kingdom. jackie.scully@ncl.ac.uk |
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Abstract: | The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient-centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal 'depth of field'. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics. |
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Keywords: | genetic testing prenatal testing Huntington's disease cancer decision making qualitative research ethics |
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