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开放身份的捐赠者是否为身份公开做好了准备?一项针对全国卵母细胞和精子捐赠者样本的长期随访研究。

Are open-identity donors prepared for release of their identity? Long-term follow-up of a national sample of oocyte and sperm donors.

作者信息

Lampic Claudia, Thorup Emilia, Bladh Marie, Nedstrand Elizabeth, Brinck Xana, Svanberg Agneta Skoog, Sydsjö Gunilla

机构信息

Department of Psychology, Umeå University, Umeå, Sweden.

Department of Psychology, Lund University, Lund, Sweden.

出版信息

Hum Reprod. 2025 Jul 31. doi: 10.1093/humrep/deaf134.


DOI:10.1093/humrep/deaf134
PMID:40743483
Abstract

STUDY QUESTION: What are the perspectives of oocyte and sperm donors 14-17 years post-donation on the release of their identity and potential contact with donor-conceived offspring (DCO)? SUMMARY ANSWER: Most oocyte and sperm donors wanted to be notified about future releases of their identity and were positive towards contact with DCO, but more than half expressed a need for support in relation to potential contact. WHAT IS KNOWN ALREADY: Worldwide, an increasing number of individuals conceived by open-identity donation are reaching an age where they may request donor identity. Little is known regarding donors' preparedness for identity-release and potential contact with DCO. STUDY DESIGN, SIZE, DURATION: This study is part of the 'Swedish Study on Gamete Donation' (SSGD), a longitudinal multicentre study including oocyte and sperm donors at all clinics performing gamete donation in Sweden. Consecutive recruitment during a 3-year period (2005-2008) resulted in an initial sample of 299 donors (80% response rate). The present study concerns the fifth wave of data collection of the SSGD conducted 14-17 years post-donation, with very high response rates (oocyte donor 83%, sperm donor 92%). Following exclusion of donors who knew the recipients and/or knew that the donation had not resulted in a living child, the final sample comprised 100 oocyte donor and 91 sperm donor. PARTICIPANTS/MATERIALS, SETTING, METHODS: Fourteen to seventeen years after having participated in open-identity donation of their gametes, participants completed a postal survey with study-specific questions. Questions concerned preferences related to the release of their identity to DCO, attitudes towards future contact with people conceived from their donations, need for support regarding potential contact, attitudes towards the perceived importance of the genetic link between parent and child, and openness about having donated oocytes or sperm. Chi-square tests, independent t-tests, and Mann-Whitney U-tests were used to compare responses between oocyte and sperm donors. Multinomial logistic regression was used to identify factors associated with donors' attitudes towards future contact with DCO and need for support. Content analysis was used to analyse free-text responses. MAIN RESULTS AND THE ROLE OF CHANCE: Almost all oocyte and sperm donors wanted to be notified about requests for their identity (93%). A majority had positive (71%) or neutral (19%) attitudes towards contact with DCO, but a small group was negative (10%), and more than half wanted support related to potential contact (59%). Free-text responses indicated that donors took the interests of both the DCO and their own family members into account when considering future contact. Donors' attitudes towards contact with people conceived from their donations and donors' need for support were not predicted by socio-demographic factors such as donors' gender and legal children, nor by the perceived importance of the genetic parent-child link. While oocyte and sperm donors displayed similar perspectives on most outcomes, oocyte donors were found to be more open about having donated to all people except partners (All P-values <0.05) and sperm donors placed a higher value on the genetic parent-child link (P = 0.005). LIMITATIONS, REASONS FOR CAUTION: While the multicentre design and high response rates strengthen the external validity of our findings, the results may not be generalizable to originally anonymous donors. The scope of the qualitative analysis was limited due to the restricted number of free-text responses. An interview format may be needed to further explore donors' thoughts and feelings regarding potential contact with DCO. WIDER IMPLICATIONS OF THE FINDINGS: At a time when increasing numbers of donor-conceived people can request donor-identifying information, our finding that donors generally are positive or neutral towards being contacted by DCO is encouraging. Long-term support of open-identity donors should include notification about requests for their identity and access to counselling and information about handling potential future contact with people conceived from their donations. STUDY FUNDING/COMPETING INTEREST(S): The study has received financial support from the Swedish Research Council (grant number 2021-03174), the Swedish Research Council for Health, Working Life and Welfare, and grants from the Swedish state under an agreement between the Swedish Government and the County Councils, ALF Grants, Region Östergötland. The authors have no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

摘要

研究问题:卵子和精子捐赠者在捐赠14至17年后,对于公开其身份以及与通过捐赠受孕的后代(DCO)可能的接触持何种看法? 总结答案:大多数卵子和精子捐赠者希望被告知未来其身份的公开情况,并且对于与DCO接触持积极态度,但超过半数的捐赠者表示在潜在接触方面需要支持。 已知信息:在全球范围内,越来越多通过公开身份捐赠受孕的人已到可以请求获取捐赠者身份的年龄。关于捐赠者对身份公开及与DCO潜在接触的准备情况,我们所知甚少。 研究设计、规模、持续时间:本研究是“瑞典配子捐赠研究”(SSGD)的一部分,这是一项纵向多中心研究,涵盖了瑞典所有进行配子捐赠的诊所的卵子和精子捐赠者。在3年期间(2005 - 2008年)连续招募,初始样本为299名捐赠者(回复率80%)。本研究涉及SSGD在捐赠后14至17年进行的第五轮数据收集,回复率非常高(卵子捐赠者83%,精子捐赠者92%)。在排除了认识受赠者和/或知道捐赠未产生存活子女的捐赠者后,最终样本包括100名卵子捐赠者和91名精子捐赠者。 参与者/材料、设置、方法:在参与公开身份的配子捐赠14至17年后,参与者完成了一份针对该研究的邮寄调查问卷。问题涉及与向DCO公开其身份相关的偏好、对未来与通过其捐赠受孕的人接触的态度、在潜在接触方面对支持的需求、对亲子间基因联系重要性的看法以及对捐赠卵子或精子的开放程度。使用卡方检验、独立样本t检验和曼 - 惠特尼U检验来比较卵子和精子捐赠者之间的回复。多项逻辑回归用于确定与捐赠者对未来与DCO接触的态度以及对支持的需求相关的因素。内容分析用于分析自由文本回复。 主要结果及机遇的作用:几乎所有卵子和精子捐赠者都希望被告知对其身份的查询(93%)。大多数人对与DCO接触持积极(71%)或中立(19%)态度,但一小部分人持消极态度(10%),超过半数的人希望在潜在接触方面得到支持(59%)。自由文本回复表明,捐赠者在考虑未来接触时兼顾了DCO及其家庭成员的利益。捐赠者对与通过其捐赠受孕的人接触的态度以及对支持的需求,并未由诸如捐赠者性别和亲生子女等社会人口学因素预测,也未由对亲子基因联系的重要性的认知所预测。虽然卵子和精子捐赠者在大多数结果上表现出相似的观点,但发现卵子捐赠者除了对伴侣外,对向所有人公开捐赠情况更为开放(所有P值<0.05),而精子捐赠者更看重亲子间的基因联系(P = 0.005)。 局限性、谨慎原因:虽然多中心设计和高回复率增强了我们研究结果的外部有效性,但结果可能不适用于最初匿名的捐赠者。由于自由文本回复数量有限定性分析的范围受到限制。可能需要采用访谈形式来进一步探究捐赠者关于与DCO潜在接触的想法和感受。 研究结果的更广泛影响:在越来越多通过捐赠受孕的人能够请求获取捐赠者身份识别信息的时代,我们发现捐赠者通常对DCO的联系持积极或中立态度,这是令人鼓舞的。对公开身份捐赠者的长期支持应包括告知其身份查询情况,并提供关于处理未来与通过其捐赠受孕的人潜在接触的咨询和信息服务。 研究资金/利益冲突:该研究获得了瑞典研究理事会(资助编号2021 - 03174)、瑞典卫生、工作生活与福利研究理事会的资金支持,以及瑞典政府与郡议会协议下瑞典国家提供的资助,阿尔夫资助,东约特兰地区。作者声明无利益冲突。 试验注册号:无。

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