Shiri Shkedi-Rafid, Aviad Raz, Maya Sabatello, Barbara Prainsack, Roy Gilbar
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引用次数: 0
Abstract
Background: 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.
Purpose: This paper aims to examine a challenging, underexplored question: whether gamete donors' raw data should be provided to recipient parents.
Methods: Using a clinical case, we explore the key ethical, legal, and clinical implications of such access, weighing the advantages, disadvantages, and potential alternatives.
Results: 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.
Conclusion: We advocate a cautious approach that favors clinically mediated access over unrestricted parental access.
期刊介绍：
The Journal of Assisted Reproduction and Genetics publishes cellular, molecular, genetic, and epigenetic discoveries advancing our understanding of the biology and underlying mechanisms from gametogenesis to offspring health. Special emphasis is placed on the practice and evolution of assisted reproduction technologies (ARTs) with reference to the diagnosis and management of diseases affecting fertility. Our goal is to educate our readership in the translation of basic and clinical discoveries made from human or relevant animal models to the safe and efficacious practice of human ARTs. The scientific rigor and ethical standards embraced by the JARG editorial team ensures a broad international base of expertise guiding the marriage of contemporary clinical research paradigms with basic science discovery. JARG publishes original papers, minireviews, case reports, and opinion pieces often combined into special topic issues that will educate clinicians and scientists with interests in the mechanisms of human development that bear on the treatment of infertility and emerging innovations in human ARTs. The guiding principles of male and female reproductive health impacting pre- and post-conceptional viability and developmental potential are emphasized within the purview of human reproductive health in current and future generations of our species.
The journal is published in cooperation with the American Society for Reproductive Medicine, an organization of more than 8,000 physicians, researchers, nurses, technicians and other professionals dedicated to advancing knowledge and expertise in reproductive biology.
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