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Socially responsible genetic research with descendants of the First Australians

机译:具有社会责任感的遗传研究与第一批澳大利亚人的后代

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Aboriginal Australians, one of the world’s indigenous peoples now outnumbered through colonization, are the most under-represented in genetic research because they feel that the benefits do not outweigh the social cost of involvement. Descendants of the First Australians have survived a period of European occupation during which time they were dispossessed of land, language and cultural identity resulting in inequities in health, education, and employment opportunities. Compared to Maori and Native American peoples, the ability to form organizations that help to control their affairs is very recent. The desire to control is understandably strong yet the ‘gate-keeping’ role of some organizations risks shifting the control away from smaller communities and has become increasingly politicized. In the past, research practices by Western scientists were poorly presented and have resulted in resistance to proposals that are perceived to have no beneficial outcomes for participants. In this age of advanced technological expertise in genetics, benefits to all humanity are clear to those carrying out research projects, yet not always to those being asked to participate, presenting extra challenges. Excellent guidelines for ethical conduct in research are available to assist researchers, prospective participants, and ethics committees or review boards that approve and monitor procedures. The essence of these guidelines are that research should be carried out with a spirit of integrity, respect, reciprocity, parity, recognition of survival and protection of social and cultural values, a need for control and shared responsibility. Specific Aboriginal organizations, with which researchers need to work to negotiate partnerships, vary within and between Australian states and will always expect Aboriginal personnel to be involved. People experienced in the consultation process are necessary as part of a team. By working patiently through lengthy negotiations with Aboriginal Australians, scientists can achieve valuable results, but failure to do so with respect and understanding will not yield hoped for outcomes. My own experience working with communities in the Darling River region of western New South Wales has been an enriching and rewarding one, with a long period of successful research lately delayed by increased expectation of monitoring and involvement at state level.
机译:在殖民研究中,原住民澳大利亚人现在是世界上土著人民之一,但他们在基因研究中的人数最多,因为他们认为收益不超过参与的社会成本。最初的澳大利亚人的后裔在欧洲占领时期幸存下来,在此期间,他们被剥夺了土地,语言和文化特征,导致健康,教育和就业机会不平等。与毛利人和美洲原住民相比,组建能够控制其事务的组织的能力是最近才出现的。可以理解,控制的愿望很强烈,但是某些组织的“守门员”角色有将控制权转移到较小社区的风险,并且已日益政治化。过去,西方科学家的研究实践表现得很差,导致人们反对那些被认为对参与者没有任何有益结果的提议。在当今遗传学领域的先进技术专长的时代,进行研究项目的人对全人类都有明显的收益,但并非总是对那些被要求参与的人带来额外的挑战。可提供有关研究中道德行为的出色指南,以协助研究人员,准参与者以及伦理委员会或批准和监督程序的审查委员会。这些准则的实质是,研究应本着正直,尊重,互惠,同等,承认生存和保护社会和文化价值,控制和共同责任的精神进行。在澳大利亚各州内部和各州之间,研究人员需要与特定的原住民组织进行合作,以协商伙伴关系,并且始终希望原住民人员参与其中。咨询过程中经验丰富的人员是团队的一部分。通过耐心地与澳大利亚原住民进行漫长的谈判,科学家可以取得有价值的成果,但是如果没有尊重和理解,这样做就不会产生希望的结果。我自己在新南威尔士州西部达令河地区的社区工作的经历是一次充实而有益的工作,长期的成功研究后来由于对州一级的监督和参与的期望增加而被推迟。

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