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捐赠者匿名制的终结:基因检测如何可能使匿名配子捐赠不再可行。

The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business.

作者信息

Harper Joyce C, Kennett Debbie, Reisel Dan

机构信息

Embryology, IVF and Reproductive Genetics Group, Institute for Women's Health, University College London, London, UK

Research Department of Genetics, Evolution and Environment, University College London, London, UK.

出版信息

Hum Reprod. 2016 Jun;31(6):1135-40. doi: 10.1093/humrep/dew065. Epub 2016 Apr 12.

DOI:10.1093/humrep/dew065
PMID:27073260
Abstract

Thousands of people worldwide have been conceived using donor gametes, but not all parents tell their children of their origin. Several countries now allow donor-conceived offspring to potentially know their genetic parent if they are informed of their donor-conceived status. At the same time, personal genetic testing is a rapidly expanding field. Over 3 million people have already used direct-to-consumer genetic testing to find information about their ancestry, and many are participating in international genetic genealogy databases that will match them with relatives. The increased prevalence of these technologies poses numerous challenges to the current practice of gamete donation. (i) Whether they are donating in a country that practices anonymous donation or not, donors should be informed that their anonymity is not guaranteed, as they may be traced if their DNA, or that of a relative, is added to a database. (ii) Donor-conceived adults who have not been informed of their status may find out that they are donor-conceived. (iii) Parents using donor conception need to be fully informed that their children's DNA will identify that they are not the biological parents and they should be encouraged to disclose the use of donor gametes to their children. Together, these concerns make urgent a wide-ranging societal conversation about how to best safeguard and promote the interests of donor-conceived offspring and protect the rights of donors. Specifically, there is a need to ensure that new genetic information is communicated in a way that promotes both the safety and the privacy rights of offspring and donors alike. All parties concerned must be aware that, in 2016, donor anonymity does not exist.

摘要

全球数以千计的人通过使用捐赠配子受孕,但并非所有父母都会告知孩子其身世。现在有几个国家允许通过捐赠受孕的后代在得知自己的身世后有可能了解其基因父母。与此同时,个人基因检测是一个迅速发展的领域。已有超过300万人使用直接面向消费者的基因检测来查找有关其祖先的信息,许多人还参与了国际基因族谱数据库,该数据库会将他们与亲属进行匹配。这些技术的日益普及给当前的配子捐赠实践带来了诸多挑战。(i)无论捐赠者是在实行匿名捐赠的国家还是其他国家进行捐赠,都应告知他们其匿名性无法得到保证,因为如果他们或其亲属的DNA被添加到数据库中,他们可能会被追踪到。(ii)未被告知自己身世的通过捐赠受孕的成年人可能会发现自己是通过捐赠受孕的。(iii)使用捐赠受孕的父母需要充分了解,其孩子的DNA会表明他们并非亲生父母,应鼓励他们向孩子披露使用了捐赠配子这一情况。这些担忧共同使得关于如何最好地保障和促进通过捐赠受孕的后代的利益以及保护捐赠者权利的广泛社会讨论变得紧迫。具体而言,有必要确保以既能促进后代和捐赠者的安全又能保障其隐私权的方式传达新的基因信息。所有相关方都必须意识到,在2016年,捐赠者匿名已不复存在。

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