Department of Health Ethics and Society/Caphri, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, the Netherlands.
Soc Sci Med. 2011 Jun;72(11):1752-9. doi: 10.1016/j.socscimed.2010.06.012. Epub 2010 Jun 25.
The literature shows that genetic testing could stimulate solidarity among family members, but also lead to major conflicts. To prevent negative effects, clinical geneticists and ethicists have stressed the importance of 'good communication' within families. In this qualitative study, we followed six extended families in the southern and eastern Netherlands involved in genetic testing for familial hypertrophic cardiomyopathy for three and a half years. In total 57 members of these families were interviewed in depth, most more than once. Our analysis shows that genetic testing does affect families, but that families perform a lot of 'balancing work' in order to prevent genetic testing from becoming too all-encompassing. There is much more continuity in family life than is often thought. Moreover, as these families demonstrate different styles of family work, establishing a single norm of 'good communication' in clinical genetics might in fact be more harmful for family life than genetic testing itself.
文献表明，基因检测既能促进家庭成员之间的团结，也可能导致重大冲突。为了防止负面影响，临床遗传学家和伦理学家强调了家庭内部“良好沟通”的重要性。在这项定性研究中，我们跟踪了荷兰南部和东部的六个扩展家庭，他们在三年内半的时间里接受了家族性肥厚型心肌病的基因检测。这些家庭的 57 名成员接受了深入的采访，大多数人不止一次接受采访。我们的分析表明，基因检测确实会影响家庭，但家庭会进行大量的“平衡工作”，以防止基因检测变得过于包罗万象。家庭生活比人们通常认为的更具有连续性。此外，正如这些家庭所展示的不同风格的家庭工作，在临床遗传学中建立单一的“良好沟通”规范实际上可能比基因检测本身对家庭生活更有害。
