基因信息提供者利益分享的正义与模式

Justice and Models of Benefit Sharing for Gene Information Providers

基因信息提供者作为基因研究项目中特殊的参与者,相比于研究者,在研究成果的利益分享环节中处于不利地位。基因信息提供者主张对研究成果的合理享有往往面临着“道德风险”的伦理争议,难以得到公平正义的利益分配。从维护社会公平正义和统一研究者自身权利与义务的角度出发,肯定提供者获得利益分配的资格,“作为公平的正义”保障最不利地位者的合法利益,“德性的义务”原则督促研究者行使利益分享的义务。通过限定利益主体、优化知情同意、允许货币分享等方式来充分保障提供者利益分享权益。

As special participants in genetic research projects,genetic information providers often find themselves in a disadvantaged position compared to researchers in the benefit-sharing phase of research outcomes.Gene information providers often face ethical controversies of"moral hazard"when they advocate the reasonable ownership of research outcomes,and it is difficult to obtain fair and just benefit distribution.From the perspective of maintaining social fairness and justice and balancing researchers'power and obligations,we affirm the qualifications of providers to receive benefit distribution,safeguard the legitimate interests of the most disadvantaged with"fairness and justice",and urge researchers to fulfill the obligation of sharing benefits with the principle of"moral obligation".By restricting stakeholders,optimizing informed consent,and allowing currency sharing,the goal is to fully safeguard the benefit-sharing rights of providers.