Ruiz-Canela Miguel, Valle-Mansilla J Ignacio, Sulmasy Daniel P
Department of Biomedical Humanities, School of Medicine, University of Navarra, Pamplona, Spain.
J Empir Res Hum Res Ethics. 2011 Sep;6(3):39-46. doi: 10.1525/jer.2011.6.3.39.
The disclosure of individual genetic results has generated an ongoing debate about which rules should be followed. We aimed to identify factors related to research participants' preferences about learning the results of genomic studies using their donated tissue samples. We conducted a cross-sectional survey of 279 patients from the United States and Spain who had volunteered to donate a sample for genomic research. Our results show that 48% of research participants would like to be informed about all individual results from future genomic studies using their donated tissue, especially those from the U.S. (71.4%) and those believing that genetic information poses special risks (69.7%). In addition, 16% of research participants considered genetic information to be riskier than other types of personal medical data. In conclusion, our study demonstrates that a high proportion of participants prefer to be informed about their individual results and that there is a higher preference among those research subjects who perceive their genetic information as riskier than other types of personal medical data.
个人基因检测结果的披露引发了一场关于应遵循何种规则的持续辩论。我们旨在确定与研究参与者对于了解使用其捐赠组织样本进行的基因组研究结果的偏好相关的因素。我们对来自美国和西班牙的279名自愿捐赠样本用于基因组研究的患者进行了横断面调查。我们的结果显示，48%的研究参与者希望被告知未来使用其捐赠组织进行的所有基因组研究的个人结果，尤其是来自美国的参与者（71.4%）以及那些认为基因信息存在特殊风险的参与者（69.7%）。此外，16%的研究参与者认为基因信息比其他类型的个人医疗数据风险更高。总之，我们的研究表明，很大一部分参与者希望被告知他们的个人结果，并且在那些认为其基因信息比其他类型的个人医疗数据风险更高的研究对象中，这种偏好更为强烈。
