PDF(Pubmed)
Abstract：
Background: There is growing interest in advancing biobanking and genetic research in many countries, including India. Concurrently, more importance is being placed on participatory approaches involving the public and other stakeholders in addressing ethical issues and policymaking as part of a broader governance approach. We analyse the tools, purposes, outcomes and limitations of engaging people towards biobanking and genetic research governance that have been undertaken worldwide, and explore their relevance to India. Methods: Papers to be reviewed were identified through a targeted literature search carried out using ProQuest and PubMed. Retrieved papers were analysed with the Rpackage for Qualitative Data Analysis using inductive coding and thematic analysis, guided by the Framework Method. Results: Empirical studies on public and community engagement in the context of biobanking and or genetic research show a predominance towards the end of the last decade, spanning 2007 to 2019. Numerous strategies-including public meetings, community durbars, focus group discussions, interviews, deliberations, citizen-expert panels and community advisory boards-have been used to facilitate communication, consultation and collaboration with people, at the level of general and specific publics. Engagement allowed researchers to understand how people\'s values, opinions and experiences related to the research process; and enabled participants to become partners within the conduct of research. Conclusions: Constructs such as \'co-production\', \'engagement of knowledges\', \'rules of engagement\' and \'stewardship\' emerge as significant mechanisms that can address the ethical challenges and the governance of biobanking and genetic research in India. Given the inherent diversity of the Indian population and its varying cultural values and beliefs, there is a need to invest time and research funds for engagement as a continuum of participatory activity, involving communication, consultation and collaboration in relation to biobanking and genetic research. Further research into these findings is required to explore their effective employment within India.
摘要：
背景：在许多国家，人们对推进生物样本和遗传研究越来越感兴趣，包括印度。同时,作为更广泛的治理方法的一部分，越来越重视让公众和其他利益攸关方参与解决道德问题和决策的方法。我们分析工具，目的,使人们参与全球范围内进行的生物样本和遗传研究治理的结果和局限性，并探索它们与印度的相关性。方法：通过使用ProQuest和PubMed进行有针对性的文献检索来确定要审查的论文。使用归纳编码和主题分析的定性数据分析Rpackage对检索到的论文进行了分析，以框架方法为指导。结果：在生物样本和/或遗传研究的背景下，对公众和社区参与的实证研究表明，在过去十年末，从2007年到2019年。许多战略——包括公开会议，社区durbars,焦点小组讨论,采访,审议，公民专家小组和社区咨询委员会已被用来促进沟通，与人的协商和合作，在一般和特定公众层面。参与让研究人员了解人们的价值观，与研究过程相关的意见和经验；并使参与者成为研究过程中的合作伙伴。结论：诸如“联合生产”之类的构造，\'知识的参与\'，“参与规则”和“管理”作为重要机制出现，可以解决印度生物样本和基因研究的伦理挑战和治理。鉴于印度人口固有的多样性及其不同的文化价值观和信仰，有必要投入时间和研究资金参与作为一个连续的参与活动，涉及沟通，与生物样本和遗传研究有关的咨询和合作。需要进一步研究这些发现，以探索他们在印度的有效就业。
