Urban Alexander
Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Göttingen, Germany.
Faculty of Social Sciences, Georg-August-University Göttingen, Göttingen, Germany.
Front Sociol. 2020 Dec 1;5:532357. doi: 10.3389/fsoc.2020.532357. eCollection 2020.
With the establishment of genome sequencing, the influence of genomic information on self-understanding and identity construction has become increasingly important. New sequencing methods far exceed previous genetic tests in terms of scope and quantity. Despite theoretical approaches, however, there are few empirical findings on the identity-relevant influence of genomic information. The present study examines genomic information's identity-relevant influences and considers whether developments in the field of genome sequencing may generate problems that are not yet addressed by existing identity concepts based on traditional genetic tests. The study is based on 10 partially standardized interviews with personally affected persons and four focus groups with medical laypersons as representatives of the public, which were evaluated on the basis of qualitative content analysis. As a result, this paper presents five thematic areas with identity-relevant references within subjective attitudes toward the handling of genomic information, and also derives two basic identity concepts. The results indicate that the lay discourse is still strongly based on older debates about genetic testing and that the view on the complexity of genomic information established in the scientific context has thus far no influence on the perspectives either of those affected or laypersons.
随着基因组测序技术的建立，基因组信息对自我认知和身份构建的影响变得越来越重要。新的测序方法在范围和数量上远远超过了以前的基因检测。然而，尽管有理论方法，但关于基因组信息与身份相关的影响的实证研究结果却很少。本研究考察了基因组信息与身份相关的影响，并探讨基因组测序领域的发展是否可能产生一些现有基于传统基因检测的身份概念尚未解决的问题。该研究基于对受影响个人的10次部分标准化访谈以及以普通公众为代表的4个外行人焦点小组，并通过定性内容分析进行评估。结果，本文提出了在对待基因组信息的主观态度中与身份相关的五个主题领域，并得出了两个基本的身份概念。结果表明，外行人的论述仍然强烈基于关于基因检测的早期辩论，并且在科学背景下确立的关于基因组信息复杂性的观点迄今对受影响者或外行人的观点没有影响。
