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Building a Family Tree: Donor-Conceived People, DNA Tracing and Donor 'Anonymity'.

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Abstract

Genealogical tracing of ancestors has existed across cultures and throughout history for thousands of years. Today it is a popular pastime for many, with motivations ranging from a desire to place themselves and their family within a larger historical picture, to preserving the past for future generations, to having a sense of self-satisfaction in accurate storytelling. It may also serve to assist people in framing their identify and building a picture of themselves. It may create a sense of connectedness and kinship. This is so for donor-conceived people, as it is with many others that search for information about their family history and heritage. This paper considers the obstacles to searching that donor-conceived people face. In particular, the secrecy that has surrounded donor conception has meant that many do not have access to the records that would identify their donor(s) or siblings. It examines the use of DNA testing, to assist. It is shown that, while proving a useful tool for some, such testing may not be enough for others. That donor-conceived people are denied access to records that would provide them with the information they seek is questioned. The authors therefore support laws that would provide access to records. Options of enabling contact vetoes or contact preferences are explored, as a way to ensure that people are comfortable that privacy and confidentiality will be protected.
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... UKDL staff used the term 'linked' rather than 'matched' given that DNA testing could only provide probability of genetic linkage rather than certainty. Reliability of the results also varied according to (i) whether the DNA of the biological parent of the donor-conceived registrant was provided for the DNA database and (ii) whether testing was for 'donor to offspring' or for 'sibling' genetic relationships, with the latter being less reliable (see also Adams and Allan, 2013). Supplementary DNA testing to increase reliability was available but only if those concerned shared a gender ('x' chromosome testing for females, 'y' chromosome testing for males) and could afford the additional cost. ...
... This may be for a number of reasons. Although registrants were told that DNA testing is not 100% accurateespecially for identifying donor-related siblingsand that additional supporting non-DNA information is important (see also Adams and Allan, 2013) the drive (or hope) to find those to whom they are genetically related through donor conception may explain why around half of registrants in each category reported 'no problem' in being on the register when there was such lack of accuracy. In other words, acceptance of associated risk may be influenced by the individual meaning attached to finding such links. ...
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... Interestingly, the Swiss laws also allowed for retrospective release of information in 2004, but it is the more recent Victorian laws that have been reported in the news media to have influenced some practices in Japan (such as the abovementioned media report that one university hospital stopped accepting new patients due to fears of retrospective abolition of donor anonymity). 1 At the same time, the situation regarding donor anonymity is changing drastically due to the existence of direct-consumer DNA testing. 18,19 People can access their genealogies, and, in some cases, donor-conceived people can find their donor or donor siblings through DNA database searches. This means that regardless of laws or practices that support donor anonymity, donor-conceived people may gain direct access to the information they seek. ...
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An absence of any statutory law in Japan regarding donor conception creates uncertainty about the status of donors in relation to the child(ren) born as a result. Laws that provide for certainty regarding the status of the donor are called for, as are laws that address donor anonymity. It would be pragmatic to introduce a prospective system that requires open donation, allowing information to be recorded and released to donor‐conceived people upon request. For past donations, a voluntary register should be established, which would allow those people who are seeking information to register this.
... These include that they only provide level of probability of genetic links rather than certainty. Those unfamiliar with the science of DNA or otherwise unwilling to acknowledge its limitations (perhaps because of strength of desire to find 'donor relatives') may therefore have unrealistic expectations/beliefs about its robustness (Adams & Allan, 2013;Crawshaw, Gunter, Tidy, & Atherton, 2013;Crawshaw, Frith, van den Akker, & Blyth, 2016). ...
Article
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Chapter
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