Elphinstone Brad, Walshe Jarrod, Nicol Dianne, Taylor Mark
Department of Psychological Sciences, Swinburne University of Technology, Hawthorn, VIC, Australia.
Faculty of Law, University of Tasmania, Hobart, TAS, Australia.
Front Public Health. 2024 Dec 13;12:1508261. doi: 10.3389/fpubh.2024.1508261. eCollection 2024.
This study aimed to identify operating conditions and governance mechanisms that would help to facilitate trust in, and willingness to donate to, a hypothetical Australian national genomic repository for health research where commercial use of data is permitted. Semi-structured telephone interviews with members of the Australian public ( = 39) clarified perceived risks and preferred repository conditions. These insights were subsequently tested experimentally in a national sample ( = 1,117). Contrary to what was expected based on the interviews, when certain baseline operating conditions were included (e.g., public management, data access committee to ensure data is restricted to human health research), none of the additional tested governance mechanisms (e.g., financial penalties for misuse) increased trust or donation willingness. Thus, providing suitable baseline conditions are in place, a feasible Australian genomic repository may not require external oversight or new legislation to optimize recruitment, even if commercial users are anticipated.
本研究旨在确定有助于促进对一个假设的澳大利亚国家健康研究基因组库的信任以及捐赠意愿的运营条件和治理机制，该基因组库允许数据的商业使用。对澳大利亚公众成员（n = 39）进行的半结构化电话访谈明确了感知到的风险和对储存库条件的偏好。随后，这些见解在一个全国性样本（n = 1,117）中进行了实验测试。与基于访谈的预期相反，当纳入某些基线运营条件（例如，公共管理、数据访问委员会以确保数据仅限于人类健康研究）时，没有一种额外测试的治理机制（例如，对滥用行为的经济处罚）能增加信任或捐赠意愿。因此，只要具备合适的基线条件，即使预计会有商业用户，一个可行的澳大利亚基因组库可能也不需要外部监督或新的立法来优化招募。
