全基因组,部分种群:在精准医学中保护,代表和后殖民政治
Laura E Navne1, Sarah Wadmann2, Ingelise Olesen3
1The Danish Center for Social Science Research, Copenhagen, Denmark; Department of Public Health, Centre for Medical Science and Technology Studies, University of Copenhagen, Denmark.
为精准医学组装罕见的糖尿病人群需要复杂的道德导航. 研究人员平衡历史问题和公共卫生目标,强调需要仔细的数据治理.
科学领域:
- 基因组学就是基因组学.
- 精准医学是一门精准的医学.
- 医学伦理 医学伦理
背景情况:
- 精准医学旨在使用遗传数据来个性化医疗保健.
- 罕见疾病在患者招募和伦理考虑方面存在独特的挑战.
- 基因组研究项目需要仔细导航包含/排除标准.
研究的目的:
- 探索收集罕见糖尿病人群用于精密医学研究的伦理挑战.
- 调查基因组研究中保护和代表的道德导航.
- 了解在丹麦和格陵兰岛招募患者时的伦理问题.
主要方法:
- 在丹麦的TRANSLATE基因组研究项目的民族学实地研究.
- 在丹麦诊所招募患者时对伦理问题的分析.
- 检查将格陵兰患者纳入研究人口中的伦理问题.
主要成果:
- 研究人员和临床医生面临着道德困境,平衡历史上的医疗失误和殖民权力与改善公共卫生.
- 基因组研究中的包含和排除过程充满了伦理复杂性.
- 丹麦诊所的招聘和格陵兰患者的纳入提出了不同的伦理挑战.
结论:
- 对罕见疾病的精准医学伦理进行导航需要解决历史背景和当今公共卫生目标.
- 公民参与和协作数据治理为基因组数据政治提供了潜在的前进途径.
- 这项研究强调了基因组研究中协作方法的局限性和可能性.
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