Use of Bodily Tissues in Research – Pacific perspectives from Dunedin, New Zealand

Olivia Thompson, J. Anderson, Margaret Chen, Grace Haack, R. Mane, Tessa Stewart, James Strickland, J. Walthert, Sarah Jutel, Talai Mapusua, D. Schwenke, F. Sopoaga, Simon Walker, R. Richards
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Abstract

Introduction Donation of human tissue is essential for biomedical research to improve our understanding of the causes and treatment of diseases. To facilitate this, researchers need to understand what approaches and processes make donation and storage more acceptable for various communities. This study explores the perspectives of Pacific peoples living in Dunedin, New Zealand on the use of human tissues for biomedical research. Methods In April 2018, four focus groups (total of 18 participants) were held with members of the Pacific community in Dunedin. Each group was demographically different, with groups consisting of; elders of mixed ethnicity, university students, medical doctors and one Tongan group of mixed ages. An open-ended questioning style was used, with specific prompts about participant’s perceptions of the purpose and processes for donating tissues for research and things that might make them more or less likely to donate. Findings There were a diverse range of views expressed, reflecting the diversity of participants across different ethnicities and ages. While participant responses varied widely in terms of enthusiasm or caution towards different types of donation, similar themes emerged regarding the importance of detailed informed consent, and respect and trust towards both the donors and/or their tissues. The importance of culture and religion on the attitudes or perspectives towards donation was also highlighted. Finally, it was perceived that donation is likely to be more acceptable if researchers are able to explain why their work is meaningful in a Pacific context and adapt to Pacific situations and/or concerns within the research protocols. Conclusions For Pacific peoples to derive the most benefit from research initiatives it is important that processes to collect human tissue are respectful of cultural protocols and expectations to support participation. This study provides useful information to support the evolution of guidelines within the NZ research context.
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身体组织在研究中的应用——来自新西兰达尼丁的太平洋视角
人体组织捐献对生物医学研究至关重要,可以提高我们对疾病原因和治疗的认识。为了促进这一点,研究人员需要了解哪些方法和过程使捐赠和储存更容易被各个社区所接受。本研究探讨了居住在新西兰达尼丁的太平洋民族对使用人体组织进行生物医学研究的看法。方法2018年4月,在达尼丁与太平洋社区成员举行了四个焦点小组(共18名参与者)。每个群体在人口统计学上是不同的,群体包括;混合族裔的老年人、大学生、医生和一个混合年龄的汤加人群体。采用开放式提问方式,具体提示参与者对捐赠组织用于研究的目的和过程的看法,以及可能使他们或多或少可能捐赠的事情。调查结果反映了不同种族和年龄的参与者的多样性,表达了不同的观点。虽然参与者的反应在对不同类型的捐赠的热情或谨慎方面差异很大,但在详细知情同意的重要性以及对捐赠者和/或其组织的尊重和信任方面出现了类似的主题。还强调了文化和宗教对捐赠态度或观点的重要性。最后,人们认为,如果研究人员能够解释为什么他们的工作在太平洋背景下是有意义的,并且能够适应太平洋的情况和/或研究规程中的关切,那么捐赠可能更容易被接受。为了使太平洋人民从研究倡议中获得最大利益,收集人体组织的过程必须尊重文化协议和支持参与的期望。这项研究提供了有用的信息,以支持新西兰研究背景下指导方针的演变。
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