Direct-to-consumer genetic testing and donor-conception: support and governance in emerging digital systems

直接面向消费者的基因检测（DTCGT）的使用正在对精子、卵子和胚胎供体受孕（以下简称供体受孕）产生重大影响。具体而言，它在保持捐助者匿名方面造成了困难。DTCGT服务包括家族史网站，如Ancestry.com，和医学测试网站，如23andme。尽管人们使用这些服务的动机不同，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。有些人发现了大量的捐赠者兄弟姐妹，而捐赠者已经被他们的成年捐赠者后代追踪。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评估她患乳腺癌的风险后发现她是捐赠者，这是她决定参加该测试时从未预料到的可能性。这些发现往往是有代价的，破坏了家庭生活和关系，暴露了家庭秘密。这可能导致对家族史和个人身份的重新评估。本项目旨在研究参与捐赠概念的人使用DTCGT的经验和治理影响。重点是在英国的背景下，但该项目将在其他国家的实践产生影响。这项研究很重要，因为DTCGT的使用正在迅速增长，但没有相应地制定良好做法指南和治理结构。随着供体受孕和DTCGT的使用呈指数级增长，预计到2021年全球将有超过1亿人参加检测，发现供体关系的能力将影响越来越多的人。第一批非匿名出生的人将于2023年在英国成年，并能够通过HFEA登记册获得有关其捐赠者的身份信息。鉴于所有这些因素，迫切需要研究人们如何体验搜索和获取有关其捐赠者构想关系的信息，以及如果需要进行任何监管改革，这是一个跨学科项目，借鉴社会学，社会法律研究，家庭心理学和生物伦理学，使用这些学科的一系列理论资源。我们将采用各种方法来探索越来越多地使用DTCGT的多方面性质：法律;政策分析;专家访谈;与捐赠者怀孕的成年人，捐赠者和父母的定性访谈;互动研讨会;以及伦理和社会法律分析。该项目将通过提供现有规定，政策和法规缺乏的证据基础做出实质性贡献。这些发现也将与DTCGT的更广泛使用和更普遍地使用在线医疗服务有关。该项目将在三个关键领域产生影响：1. 2.为DTCGT的使用者制作信息和支助材料：捐助者怀孕的人、捐助者和父母;以及那些考虑使用DTCGT的人。为专业人士（诊所、咨询师）和DTCGT公司提供实用的指导和支持材料。为国内和国际的政策制定者和监管机构提供治理建议。

The 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). Specifically, it creates difficulties in maintaining the anonymity of donors. DTCGT services include family history sites, e.g. Ancestry.com, and medical testing sites, e.g.23andme. Despite the 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. These discoveries often come at a cost, disrupting family life and relationships and exposing family secrets. This can lead to reassessments of family history and individual identity.This project aims to examine the experiences and the governance implications of the use of DTCGT by those involved in donor conception. The focus is on the UK context but the project will have implications for practice in other countries. This study is important because the use of DTCGT is growing rapidly without the corresponding development of good practice guidelines and governance structures. With the exponential rise in the use of donor conception and DTCGT, predicted to grow to over 100 million people worldwide taking tests by 2021, the ability to uncover donor relations will affect an increasing number of people. The first cohort of people born under non-anonymity will come of age in 2023 in the UK and be able to access identifying information about their donor through the HFEA Register. In light of all these factors, there is a pressing need for research on how people experience searching for and accessing information about their donor-conceived relations and what, if any, regulatory reforms are needed.This is an inter-disciplinary project, drawing on sociology, socio-legal studies, family psychology and bioethics, using a range of theoretical resources from these disciplines. We will employ a variety of methods to explore the multi-faceted nature of the growing use of DTCGT: law; policy analysis; expert interviews; qualitative interviews with donor-conceived adults, donor and parents; interactive workshops; and ethical and socio-legal analysis.This project will make a substantial contribution by producing the evidence-base that current provision, policy and regulation lacks. The findings will also be relevant to wider uses of DTCGT and the use of online health services more generally. The project will generate impact in three key areas: 1. Produce information and support materials for users of DTCGT: donor-conceived people, donors and parents; and those thinking of using DTCGT.2. Provide practical guidance and support materials for professionals (clinics, counsellors) and DTCGT companies.3. Make governance recommendations for policy makers and regulators both nationally and internationally.