Shaping the future and living in the present: Living a 'good' life with a familial heart disease

被引：3

作者：

Geelen, Els ^{[1
]}

Van Hoyweghen, Ine ^{[2
]}

Horstman, Klasien ^{[1
]}

机构：

[1] Maastricht Univ, Fac Hlth Med & Life Sci, Res Sch Publ Hlth & Primary Care Caphri, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands

[2] Katholieke Univ Leuven, Ctr Sociol Res CeSO, Life Sci & Soc Lab, B-3000 Leuven, Belgium

来源：

BIOSOCIETIES | 2015年 / 10卷 / 01期

关键词：

good life; future; time; decision making; pre-symptomatic genetic testing; hypertrophic cardiomyopathy; HYPERTROPHIC CARDIOMYOPATHY; GENETICS;

D O I：

10.1057/biosoc.2014.41

中图分类号：

R318 [生物医学工程]; C [社会科学总论];

学科分类号：

03 ; 0303 ; 0831 ;

摘要：

In genetic counselling practices, individuals are explicitly encouraged to take an active stance towards their future. The premise is that, by considering their genetic risks and taking preventive measures, they have some control over their future life and health. However, it is unclear how families engaged in genetic testing actually deal with the promises of genetic test results, and how they perceive their future. This qualitative study aims to provide insight into the way in which families shape and live their lives with genetic risks. How do they navigate life with a familial heart disease? We followed six extended families involved in genetic testing for hypertrophic cardiomyopathy in the Netherlands for 4 years. The present analysis of four of these families reveals how they make sense of the future in various ways and perceive the opportunities for control. Whereas some families strongly believe the future can be shaped in some way, others are reluctant, do not believe in or even protest against the notion that genetic testing will help them to shape their future lives. We conclude that in the pursuit of Nussbaum's notion of the 'good' life, 'shaping the future' and 'living in the present' are not opposing or mutually exclusive repertoires; instead, traces of both are apparent in all four case studies.

引用

页码：70 / 83

页数：14

共 38 条

[21] Moral landscapes and everyday life in families with Huntington's disease: Aligning ethnographic description and bioethics [J].

Huniche, Lotte .

SOCIAL SCIENCE & MEDICINE, 2011, 72 (11) :1810-1816

[22]

Konrad Monica., 2005, NARRATING NEW PREDIC

[23]

Lock M.M., 2010, An Anthropology of Biomedicine

[24] When it runs in the family: putting susceptibility genes in perspective [J].

Lock, Margaret ;

Freeman, Julia ;

Sharples, Rosemary ;

Lloyd, Stephanie .

PUBLIC UNDERSTANDING OF SCIENCE, 2006, 15 (03) :277-300

[25]

Lock Margaret., 2008, Biosocialities, Genetics and the Social Sciences: Making Biologies and Identities, P56

[26] Hypertrophic cardiomyopathy [J].

Maron, Barry J. ;

Maron, Martin S. .

LANCET, 2013, 381 (9862) :242-255

[27] Familial screening and genetic counselling in hypertrophic cardiomyopathy: the Rotterdam experience [J].

Michels, M. ;

Hoedemaekers, Y. M. ;

Kofflard, M. J. ;

Frohn-Mulder, I. ;

Dooijes, D. ;

Majoor-Krakauer, D. ;

Ten Cate, F. J. .

NETHERLANDS HEART JOURNAL, 2007, 15 (05) :184-190

[28]

Nowotny H., 1985, Time Preferences: An Interdisciplinary Theoretical and Empirical Approach, P1

[29]

Nowotny Helga., 2005, Time: the modern and postmodern experience

[30]

Nussbaum M., 1986, FRAGILITY GOODNESS

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