Literature DB >> 15115026

Learning from the voiceless.

Lotte Huniche1.   

Abstract

This article is concerned with understanding what is at stake in the everyday lives of family members facing Huntington's Disease (HD). The methodological and analytical point of departure is German critical psychology, particularly the category of conduct of everyday life (Holzkamp, 1995; Dreier, 1999). Specifically, I address questions of accessing and understanding the conduct of everyday life of persons facing HD who are not visibly active with respect to this circumstance. The question of access is not merely about getting in touch with persons who are not known to the research, professional and HD communities, but also about the consequences of establishing contact with persons who have not made an entry into any of these public areanas themselves. The question of understanding is about developing an analysis from a first-person perspective on the personal conduct of everyday life that is not visibly active. The development of such an understanding has broader implications, not just for further research and health care practices, but importantly also for the prevailing moral and ethical demands made on persons living at risk of hereditary diseases.

Entities:  

Keywords:  Empirical Approach; Genetics and Reproduction

Mesh:

Year:  2003        PMID: 15115026     DOI: 10.1080/1463677032000147216

Source DB:  PubMed          Journal:  New Genet Soc        ISSN: 1463-6778


  3 in total

1.  Negotiating responsibility: case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease.

Authors:  Claudia Downing
Journal:  J Genet Couns       Date:  2005-06       Impact factor: 2.537

2.  Living at risk: concealing risk and preserving hope in Huntington disease.

Authors:  Kimberly A Quaid; Sharon L Sims; Melinda M Swenson; Joan M Harrison; Carol Moskowitz; Nonna Stepanov; Gregory W Suter; Beryl J Westphal
Journal:  J Genet Couns       Date:  2007-10-18       Impact factor: 2.537

3.  Participation in environmental health research by placenta donation - a perception study.

Authors:  Uffe Lind; Tina Mose; Lisbeth E Knudsen
Journal:  Environ Health       Date:  2007-11-22       Impact factor: 5.984

  3 in total

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