O-060 Ethical implications of the direct to consumer genetic testing. What should donors and recipients know?
O-060 Ethical implications of the direct to consumer genetic testing. What should donors and recipients know?
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O-060 直接面向消费者的基因检测的伦理影响。
DOI：
10.1093/humrep/deab127.040
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发表时间：
2021
影响因子：
6.1
通讯作者：
Frith L
中科院分区：
文献类型：
--
作者：
Frith L
直接面向消费者的基因检测（DTCGT）使用的增长对精子、卵子和胚胎供体受孕（以下简称供体受孕）产生了重大影响。DTCGT服务包括家族史网站（如Ancestry.com）和医学检测网站（如23andme）。尽管人们使用这些服务有许多不同的动机，但现在更容易搜索和找到捐赠者亲属，捐赠者怀孕的人，捐赠者配子和胚胎的接受者，以及捐赠者都使用这些服务来建立迄今为止不太可能的联系。有些人找到了大量的捐赠兄弟姐妹，而捐赠者则是通过他们的成年捐赠后代来追踪的。DTCGT还可以揭示意想不到的起源，通过DTCGT发现自己是捐赠者受孕的人数迅速增加。例如，一名妇女在使用23andme来评估她患乳腺癌的风险后，发现自己是捐赠者怀孕的，这是她决定接受这项测试时从未预料到的。DTCGT的使用越来越多，有人声称匿名捐赠者已经死了，我们正在进入一个新的时代，在这个时代，找到我们的遗传亲属和大家庭的可能性大大增加了。这些发展将产生不同系统碰撞和相互作用的新景观，创造定位和寻找捐赠者亲属的新方法。例如，在英国，关于遗传关系、捐赠者和捐赠者兄弟姐妹的信息位于两个非常不同的系统中：“官方”监管系统，如人类受精和胚胎管理局（HFEA）登记处等政府机构持有的信息中央登记册；和新兴的数字在线系统，DTCGT。本文将探讨这些新发展如何与现有的寻找捐赠亲属信息的方式相互作用，并考虑生育实践的伦理和法律问题和挑战。
Abstract textThe growth in the use of direct-to-consumer-genetic testing (DTCGT) is having a major impact on sperm, egg and embryo donor conception (hereafter donor conception). DTCGT services include family history sites, e.g. Ancestry.com, and medical testing sites, e.g.23andme. Despite the many different motivations people have for using these services, it is now easier to search and find donor relatives, with donor-conceived people, recipients of donor gametes and embryos, and donors all using these services to make hitherto unlikely connections. Some individuals have found large numbers of donor-siblings, while donors have been traced by their adult donor offspring. DTCGT can also reveal unexpected origins with the numbers of people finding out they are donor-conceived through DTCGT rapidly increasing. For example, one woman discovered she was donor conceived after using 23andme to assess her risk of breast cancer, an eventuality she had never anticipated when she decided to take that test.The increasing use of DTCGT has led to claims that donor anonymity is dead and we are entering a new era where the possibilities of finding our genetic relatives and extended family have dramatically expanded. These developments will produce new landscapes where different systems collide and interact, creating new ways of locating and finding donor relatives. In the UK for example, information on genetic relations, donors and donor siblings, is located within two very different systems: ‘official’ regulatory systems, such as central registers of information held by government bodies such as the Human Fertilisation and Embryology Authority’s (HFEA) registers; and emerging digital online systems, of DTCGT.This paper will explore how these new developments interact with existing ways of finding out information about donor relatives and consider the ethical and legal issues and challenges for fertility practice.