de Groot Nina F, van Beers Britta C, Meynen Gerben
Philosophy, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
Legal Theory and Legal History, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
J Med Ethics. 2021 Sep 11;47(12):788-95. doi: 10.1136/medethics-2021-107568.
Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect's DNA with DNA from a suspect's distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA data has been performed in over 200 criminal investigations. However, this practice of so-called investigative genetic genealogy (IGG) raises ethical concerns. In this paper, we aim to broaden the bioethical analysis on IGG by showing the limitations of an individual-based model. We discuss two concerns central in the debate: privacy and informed consent. However, we argue that IGG raises pressing ethical concerns that extend beyond these individual-focused issues. The very nature of the genetic information entails that relatives may also be affected by the individual customer's choices. In this respect, we explore to what extent the ethical approach in the biomedical genetic context on consent and consequences for relatives can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The ethical debate is further complicated by the international, transgenerational and commercial nature of IGG. We conclude that IGG should not only be approached as an individual but also-and perhaps primarily-as a collective issue.
全球有超过3000万人进行了商业性的居家DNA检测,因为他们对自己的遗传血统、疾病易感性或遗传特征感兴趣。然而,这些消费者的DNA数据也越来越多地被用于一个截然不同的目的:在刑事调查中识别嫌疑人。通过将嫌疑人的DNA与那些进行过商业性居家DNA检测的远方亲属的DNA进行匹配,执法部门可以锁定犯罪者。这种对消费者DNA数据的法医用途已经在200多起刑事调查中得到应用。然而,这种所谓的调查性遗传系谱学(IGG)做法引发了伦理问题。在本文中,我们旨在通过揭示基于个体的模型的局限性来拓宽对IGG的生物伦理分析。我们讨论了辩论中的两个核心问题:隐私和知情同意。然而,我们认为IGG引发了紧迫的伦理问题,这些问题超出了这些以个体为中心的问题。遗传信息的本质意味着亲属也可能受到个体客户选择的影响。在这方面,我们探讨生物医学遗传背景下关于亲属同意和后果的伦理方法在多大程度上有助于IGG的辩论。我们认为基于个体的模型在IGG背景下有显著局限性。IGG的国际、跨代和商业性质使伦理辩论更加复杂。我们得出结论,IGG不仅应该被视为个体问题,而且——也许主要——应该被视为集体问题。