Literature DB >> 17845479

'You don't make genetic test decisions from one day to the next'--using time to preserve moral space.

Jackie Leach Scully1, Rouven Porz, Christoph Rehmann-Sutter.   

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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Year:  2007        PMID: 17845479     DOI: 10.1111/j.1467-8519.2007.00546.x

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  8 in total

Review 1.  Support for mothers, fathers and families after perinatal death.

Authors:  Laura Koopmans; Trish Wilson; Joanne Cacciatore; Vicki Flenady
Journal:  Cochrane Database Syst Rev       Date:  2013-06-19

2.  Should non-invasiveness change informed consent procedures for prenatal diagnosis?

Authors:  Zuzana Deans; Ainsley J Newson
Journal:  Health Care Anal       Date:  2011-06

3.  Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Hilde Van Esch; Kris Dierickx
Journal:  Med Health Care Philos       Date:  2015-08

4.  Disclosing Huntington's Genetic Testing Results in the Context of Intellectual Disability and Guardianship: Using the Family Illness Narrative to Guide the Flow of Information.

Authors:  Mark B Warren; Kathryn M Schak
Journal:  J Genet Couns       Date:  2016-10-15       Impact factor: 2.537

5.  It's complicated - Factors predicting decisional conflict in prenatal diagnostic testing.

Authors:  Cécile Muller; Linda D Cameron
Journal:  Health Expect       Date:  2015-04-13       Impact factor: 3.377

6.  Non-invasive prenatal diagnosis for fetal sex determination: benefits and disadvantages from the service users' perspective.

Authors:  Celine Lewis; Melissa Hill; Heather Skirton; Lyn S Chitty
Journal:  Eur J Hum Genet       Date:  2012-03-28       Impact factor: 4.246

7.  Tragedy and Grenzsituationen in genetic prediction.

Authors:  Kjetil Rommetveit; Rouven Porz
Journal:  Med Health Care Philos       Date:  2008-07-01

Review 8.  A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.

Authors:  Jane S Paulsen; Martha Nance; Ji-In Kim; Noelle E Carlozzi; Peter K Panegyres; Cheryl Erwin; Anita Goh; Elizabeth McCusker; Janet K Williams
Journal:  Prog Neurobiol       Date:  2013-09-11       Impact factor: 11.685

  8 in total

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