Life Sciences and Society Lab, Centre for Sociological Research, KU Leuven, Leuven, Belgium.
J Hum Genet. 2016 Apr;61(4):275-82. doi: 10.1038/jhg.2015.151. Epub 2016 Jan 7.
Since the 1990s, developments in the field of genetics have led to many questions on the use and possible misuse of genetic information. 'Genetic discrimination' has been defined as the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed genetic characteristics. Despite the public policy attention around genetic discrimination, there is currently still much confusion surrounding this phenomenon. On the one hand, there is little evidence of the occurrence of genetic discrimination. On the other hand, it appears that people remain concerned about this theme, and this fear influences their health and life choices. This article makes use of a systematic literature review to investigate what is already known about the nature, extent and background of these fears and concerns. The 42 included studies have found considerable levels of concerns about genetic discrimination. Concerns dominate in insurance contexts and within personal interactions. The extent of concerns appears to vary depending on the type of genetic illness. Furthermore, installed laws prohibiting genetic discrimination do not seem to alleviate existing fears. This raises important questions as to the origins of these fears. Based on the findings, recommendations for future research are made. First, research on the background of fears is needed. Second, future research needs to assess more fully all different forms (for example, direct and indirect) of genetic discrimination. Thirdly, it has to be studied whether genetic discrimination is a form of discrimination that is distinguishable from discrimination based on an illness or disability. Finally, a last element that should be addressed in future research is the most recent developments in research on genomics, such as next-generation sequencing or genome-wide association studies.
自 20 世纪 90 年代以来，遗传学领域的发展引发了许多关于使用和可能滥用遗传信息的问题。“遗传歧视”被定义为根据个体真实或假定的遗传特征，对无症状个体或其亲属进行差别待遇。尽管公众政策关注遗传歧视，但目前对这一现象仍存在许多混淆。一方面，遗传歧视的发生证据很少。另一方面，人们似乎仍然对这一主题感到担忧，这种担忧影响了他们的健康和生活选择。本文利用系统文献综述，调查了人们对这一恐惧和担忧的性质、程度和背景的已有认识。所纳入的 42 项研究发现，人们对遗传歧视的担忧程度相当高。担忧主要集中在保险领域和个人互动中。担忧的程度似乎取决于遗传疾病的类型。此外，禁止遗传歧视的既定法律似乎并没有减轻现有的担忧。这就提出了这些担忧的根源的重要问题。基于这些发现，提出了对未来研究的建议。首先，需要研究恐惧的背景。其次，未来的研究需要更全面地评估所有不同形式（例如直接和间接）的遗传歧视。第三，必须研究遗传歧视是否是一种与疾病或残疾歧视不同的歧视形式。最后，未来研究中应解决的另一个要素是基因组学研究的最新进展，例如下一代测序或全基因组关联研究。
