McWhirter Rebekah E, Nicol Dianne, Chalmers Don, Dickinson Joanne L
Menzies Research Institute Tasmania and Menzies School of Health Research.
Centre for Law and Genetics, Law Faculty, University of Tasmania.
J Law Med. 2013 Dec;21(2):323-9.
This article questions whether recognition of property rights in human tissue .would enhance protection of the interests of donors of tissue used for research purposes. Best practice already obliges researchers to comply with a range of legal and ethical obligations, with particular focus on informed consent and research transparency. A number of lawsuits relating to research use of human tissue emphasise the central importance of informed consent to donors. Informed consent of communities, as well as individuals, becomes essential when engaging in research with indigenous peoples. Increasingly genetic researchers are adopting participatory governance as a model for working with communities to develop culturally appropriate genetic studies that address health problems that are priorities for the communities involved. The transparency of the participatory governance model means that participants feel that their autonomy is respected and that their interests are being represented throughout the research process. The question of ownership of samples becomes irrelevant as control is codified through alternative mechanisms.
本文探讨了承认人体组织的产权是否会加强对用于研究目的的组织捐赠者利益的保护。最佳实践已经要求研究人员遵守一系列法律和道德义务,尤其注重知情同意和研究透明度。一些与人体组织研究使用相关的诉讼强调了知情同意对捐赠者的核心重要性。在与原住民进行研究时,社区以及个人的知情同意变得至关重要。越来越多的基因研究人员采用参与式治理作为与社区合作的模式,以开展符合文化习俗的基因研究,解决所涉社区优先关注的健康问题。参与式治理模式的透明度意味着参与者感到他们的自主权得到尊重,并且他们的利益在整个研究过程中都得到了体现。随着控制权通过其他机制得以编纂,样本所有权问题变得无关紧要。