Arar N, Seo J, Lee S, Abboud H E, Copeland L A, Noel P, Parchman M
Division of Nephrology, Department of Medicine, University of Texas Health Science Center at San Antonio, Audie L. Murphy Memorial Veterans Hospital, San Antonio, TX 78229-3900, USA.
Public Health Genomics. 2010;13(7-8):431-9. doi: 10.1159/000317099. Epub 2010 Sep 9.
Communicating genetic research results to participants presents ethical challenges. Our objectives were to examine participants' preferences in receiving future genetic research results and to compare preferences reported by veteran and nonveterans participants.
Secondary analysis was performed on data collected in 2000-2004 from 1,575 consent forms signed by Mexican-American participants enrolled in 2 genetic family studies (GFS) in San Antonio: The Family Investigation of Nephropathy and Diabetes (FIND) and the Extended FIND (EFIND). The consent forms for these studies contained multiple-choice questions to examine participants' preferences about receiving their (1) clinical lab results and (2) future genetic research results. The FIND and EFIND databases had information on subjects' demographic characteristics and some selected clinical variables. We identified veterans using the Veterans Health Administration's (VHA's) centralized data repository. We compared veterans' and nonveterans' preferences using Student's t test for continuous variables and χ² test for discrete variables. A logistic regression analyzed subjects' preference for receiving their research results, controlling for other socio-demographic and clinical variables.
The sample included 275 (18%) veterans and 1,247 (82%) nonveterans. Our results indicated a strong desire among the majority of participants 1,445 (95%) in getting their clinical lab research results. Likewise, 93% expressed interest in being informed about their future genetic results. There was no significant difference in veterans' and nonveterans' preference to disclosure of the research results (χ² test; p > 0.05). Regression analysis showed no significant relationship (p = 0.449) between the outcome (receiving research results) and veterans' responses after controlling for demographics and educational levels.
Participants believed they would prefer receiving their genetic research results. Veterans are similar to nonveterans in their preferences. Offering genetic research results to participants should be based on well defined and structured plans to enhance interpretation of genetic data.
向参与者传达基因研究结果存在伦理挑战。我们的目标是研究参与者对接收未来基因研究结果的偏好，并比较退伍军人和非退伍军人参与者报告的偏好。
对2000年至2004年收集的数据进行二次分析，这些数据来自圣安东尼奥市参与两项基因家族研究（GFS）的墨西哥裔美国参与者签署的1575份知情同意书：肾病与糖尿病家族调查（FIND）和扩展FIND（EFIND）。这些研究的知情同意书包含多项选择题，以研究参与者对接收其（1）临床实验室结果和（2）未来基因研究结果的偏好。FIND和EFIND数据库拥有关于受试者人口统计学特征和一些选定临床变量的信息。我们使用退伍军人健康管理局（VHA）的集中数据存储库识别退伍军人。我们使用学生t检验比较退伍军人和非退伍军人的偏好（用于连续变量）以及χ²检验（用于离散变量）。逻辑回归分析了受试者对接收其研究结果的偏好，并控制了其他社会人口统计学和临床变量。
样本包括275名（18%）退伍军人和1247名（82%）非退伍军人。我们的结果表明，大多数参与者（1445名，95%）强烈希望获得其临床实验室研究结果。同样，93%的人表示有兴趣了解其未来的基因结果。退伍军人和非退伍军人对披露研究结果的偏好没有显著差异（χ²检验；p>0.05）。回归分析表明，在控制人口统计学和教育水平后，结果（接收研究结果）与退伍军人的反应之间没有显著关系（p = 0.449）。
参与者认为他们更愿意接收其基因研究结果。退伍军人在偏好方面与非退伍军人相似。向参与者提供基因研究结果应基于明确界定和结构化的计划，以加强对基因数据的解读。
