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利用存档组织进行基因研究:阿拉伯联合酋长国的伦理、社会和法律考量

Genetic Research Using Archival Tissue: Ethical, Social, and Legal Considerations in the United Arab Emirates.

作者信息

Almarzooqi Saeeda, Campbell Carol

机构信息

Pathology Department, College of Medicine and Health Sciences, United Arab Emirates University, P.O. Box 17666, Al Ain, United Arab Emirates.

College of Natural and Health Sciences, Zayed University, P.O. Box 144534, Abu Dhabi, United Arab Emirates.

出版信息

Asian Bioeth Rev. 2018 Sep 7;10(3):219-230. doi: 10.1007/s41649-018-0062-z. eCollection 2018 Oct.

Abstract

Pathological archival tissue has been used as a source of research material for many years. The advancement in molecular techniques led to an escalated interest in genetic research on archival tissue. Research on archival tissue has been used without obtaining consents from patients, although the ethical justification for such a practice is unlikely to apply for genetic research that involves whole genome sequencing, for instance. Issues of confidentiality and patients' autonomy are being raised as institutions consider when approval for this type of research should be granted. In addition, patients' advocate is mandating some of these changes. In the context of the United Arab Emirates, this paper makes clear the current uncertainties arising from the use of archival tissue in genetic research, as it could be highly invasive of privacy interests and also fails to respect autonomous choice. It further explains what needs to change in order to support such research that is directed at promoting public good, but in a way that is not detrimental to the welfare of patients as research participants.

摘要

多年来,病理存档组织一直被用作研究材料的来源。分子技术的进步使得人们对存档组织的基因研究兴趣大增。尽管例如对于涉及全基因组测序的基因研究而言,这种做法的伦理依据不太可能适用,但对存档组织的研究一直在未经患者同意的情况下进行。随着各机构考虑是否应批准此类研究,保密性和患者自主权问题也随之出现。此外,患者权益倡导者正在推动其中的一些变革。在阿拉伯联合酋长国的背景下,本文明确了在基因研究中使用存档组织目前所产生的不确定性,因为这可能会严重侵犯隐私利益,也未能尊重自主选择。本文还进一步解释了为支持旨在促进公共利益但又不以损害作为研究参与者的患者福利的此类研究,需要做出哪些改变。

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