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首页> 美国卫生研究院文献>Journal of Community Genetics >Project REENCONTRO: ethical aspects of genetic identification in families separated by the compulsory isolation of leprosy patients in Brazil
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Project REENCONTRO: ethical aspects of genetic identification in families separated by the compulsory isolation of leprosy patients in Brazil

机译：REENCONTRO项目：在巴西由于强制隔离麻风病患者而被隔离的家庭中的遗传鉴定的伦理方面

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In this paper, we discuss the experience of a team of geneticists, working in partnership with a Brazilian social movement aimed at promoting the rights of victims of Hansen’s disease. These university researchers propose to use DNA test results to ascertain kinship connections and thereby reunite families that were sundered apart by draconian state policies of the mid-twentieth century that decreed the forced segregation of leprosy patients and the institutionalization of their children. The team’s aim is to help revert stigma and reinforce positive group identity as well as to facilitate judicial claims to moral and financial reparation from the Brazilian state. We will discuss how, notwithstanding the voluntary nature of tests, mediated at all times through the social movement, the geneticists take care to follow clear ethical guidelines in the collection and stocking of DNA samples as well as in the devolution of test results. The subsequent inclusion of anthropologists in the team brings to the fore new ethical dilemmas ranging from procedures in field research to the possible consequences of research results.
机译：在本文中，我们讨论了一个遗传学家团队的经验，该团队与巴西社会运动合作，旨在促进汉森氏病患者的权利。这些大学的研究人员建议使用DNA测试结果来确定亲属关系，从而使被20世纪中期严厉的国家政策（使麻风病人被迫隔离和其子女的家庭化定为法令）破灭的家庭团聚。该小组的目的是帮助消除耻辱感，增强团体的积极形象，并促进巴西对司法和经济赔偿的司法要求。我们将讨论，尽管测试具有自愿性，但始终通过社会运动进行调解，遗传学家如何在收集和储存DNA样品以及测试结果的转移中遵循明确的道德准则。随后，人类学家加入了团队，这带来了新的伦理难题，从实地研究的程序到研究结果的可能后果，不一而足。

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