Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia
Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia
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DOI：
10.1111/imj.12911
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发表时间：
2015-12-01
影响因子：
2.1
通讯作者：
Kerridge, I.
中科院分区：
文献类型：
--
作者：
Fleming, J.;Critchley, C.;Kerridge, I.
背景在过去的十年里，管理基因组研究结果的披露一直是广泛的科学，伦理和法律的评论，是生物库的一个主要挑战。目的是研究澳大利亚公众对个人研究结果（IRR）和偶然发现（IF）披露的看法从生物库基因组研究。MethodsA全国计算机辅助电话采访中进行了代表性样本（n=800）澳大利亚各州和地区的成年居民。ResultsThe大多数澳大利亚公众将有兴趣接受IRR和IF，如果他们允许他们的血液/组织用于研究; 94.4%（n=800）的人报告说，他们希望获得从您的样本中获得的可能对您的健康或治疗重要的特定信息“，和83.4%的潜在遗传性疾病的遗传风险。虽然很少有人希望接受与您的（潜在）诊断状况没有直接关系的任何IF（70.0%），但大多数人仍然希望接受IF。一个潜在的类分析的愿望，以接收（或不）所有类型的结果显示在偏好的差异，他们希望received.ConclusionThe大多数澳大利亚人的愿望，以获得最多的信息所产生的研究，涉及他们的组织，包括IRR和IF。注意到他们希望获得的信息的程度和类型的差异。生物库必须制定战略，以确定捐助者的信息需求，评估研究数据，并与捐助者和捐助者家庭沟通。过程需要考虑到供体偏好以及临床或研究背景的差异。
BackgroundOver the past decade, managing the disclosure of findings of genomic research has been the subject of extensive scientific, ethical and legal commentary and is a major challenge for biobanks.AimsTo examine views of the general Australian public about the disclosure of individual research results (IRR) and incidental findings (IF) from biobank genomic research.MethodsA national computer assisted telephone interview was conducted amongst a representative sample of (n=800) adult residents across each Australian State and Territory.ResultsThe majority of the Australian general public would be interested in receiving IRR and IF if they allowed their blood/tissue to be used in research; 94.4% (n=800) reported that they would like to receive specific information obtained from your sample that may be important to your health or treatment', and 83.4% their potential genetic risk of an inherited disease'. Although fewer desired to receive any IF that were not directly related to your (potential) diagnosed condition' (70.0%), most would still like to receive IF. A latent class analysis on the desire to receive (or not) all types of results revealed differences in preferences in the information they wished to receive.ConclusionThe majority of Australians desire to receive most information arising from research involving their tissue, including IRR and IF. Differences in the extent and type of information they desire to receive are noted. Biobanks must establish strategies to identify information needs of donors, assess research data and communicate with donors and donor families. Processes need to take account of differences in donor preferences and in the clinical or research context(s).