Shkedi-Rafid Shiri, Raz Aviad, Sabatello Maya, Prainsack Barbara, Gilbar Roy
Department of Genetics, Hadassah Medical Center, The Hebrew University of Jerusalem, Jerusalem, Israel.
Department of Sociology and Anthropology, Ben Gurion University of the Negev, Beer Sheva, Israel.
J Assist Reprod Genet. 2025 Sep 27. doi: 10.1007/s10815-025-03666-4.
Genomic sequencing yields vast amounts of data, and the access of patients and research participants to their raw genomic data raises ethical and practical dilemmas.
This paper aims to examine a challenging, underexplored question: whether gamete donors' raw data should be provided to recipient parents.
Using a clinical case, we explore the key ethical, legal, and clinical implications of such access, weighing the advantages, disadvantages, and potential alternatives.
Ethical implications include the feasibility of meaningful informed consent from donors for complex genetic testing, sometimes years after donation; privacy considerations; the type of medical information recipients can or should hold on donors; potential conflicts of interest between the donor and the child; and the potential for raised costs and commercial interests. Clinical implications involve the implementation of systems of storing donors' raw data and devices of re-contacting past donors. Legal aspects include the informed consent of gametes donors to disclose their raw data to recipient parents and privacy protections, including their right to keep their raw data in confidence.
We advocate a cautious approach that favors clinically mediated access over unrestricted parental access.
基因组测序产生了大量数据，患者和研究参与者获取其原始基因组数据引发了伦理和实际困境。
本文旨在探讨一个具有挑战性且未得到充分研究的问题：配子捐赠者的原始数据是否应提供给受赠父母。
通过一个临床案例，我们探讨了这种获取方式的关键伦理、法律和临床影响，权衡了利弊及潜在的替代方案。
伦理影响包括捐赠者对复杂基因检测给予有意义的知情同意的可行性，有时是在捐赠数年之后；隐私考量；受赠者能够或应该掌握的关于捐赠者的医疗信息类型；捐赠者与孩子之间潜在的利益冲突；以及成本增加和商业利益的可能性。临床影响涉及存储捐赠者原始数据的系统的实施以及重新联系过去捐赠者的方式。法律方面包括配子捐赠者对向受赠父母披露其原始数据的知情同意以及隐私保护，包括他们对其原始数据保密的权利。
我们主张采取谨慎的方法，支持临床介导的获取方式而非父母不受限制的获取方式。
