Aims: The goal of this project was to better understand the motivating and discouraging factors toward genetic research and biobank programs in patients with bipolar disorder, particularly across gender and racial identities. Methods: A survey (n = 63) of adults diagnosed with bipolar disorder was conducted at the general psychiatric inpatient unit and outpatient clinic at the University of Mississippi Medical Center. Participants were asked to rate on a Likert scale their attitudes toward medical research generally, mental health research specifically, and willingness to participate in a bipolar DNA biobank. Last, they were asked to endorse motivating factors or concerns for their attitude toward participation. Results: Neither attitudes toward research nor willingness to participate in a bipolar biobank differed across gender, age, or education level, but Black/African American participants were statistically significantly less likely to endorse a willingness to participate in a biobank compared to White participants. As observed in previous work, Black/African American participants were significantly more likely to endorse concerns regarding violations of trust, privacy, or autonomy. However, while there were no significant differences in discouraging factors among individuals who indicated an opposition to participating in a biobank compared to those who indicated support, there was a significant decrease in support of motivating factors, including increasing knowledge, personal benefit, and duty to community, for those not interested in participating. Conclusions: Black/African American participants with bipolar disorder were more likely to express concerns about DNA and biobank research. But while race was a contributing factor to support or opposition to biobanking for bipolar disorder research, more salient was insufficient positive motivation. These results highlight the need to emphasize contemporary safeguards on DNA research and biobanking as an ethical duty and to identify the need for community-based educational interventions to promote a greater understanding of the positive benefits to motivate increased research participation.
Public Health Genomics

中文翻译：

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双相患者参与基因组研究的激励和阻碍因素

目标：该项目的目标是更好地了解双相情感障碍患者的基因研究和生物样本库计划的激励和阻碍因素，尤其是跨性别和种族身份的因素。方法：在密西西比大学医学中心的普通精神科住院病房和门诊对诊断为双相情感障碍的成年人进行了一项调查 ( n = 63)。参与者被要求在李克特量表上对他们对医学研究的总体态度、特别是心理健康研究的态度以及参与双极 DNA 生物库的意愿进行评分。最后，他们被要求支持他们对参与的态度的激励因素或担忧。结果：无论是对研究的态度还是参与双极生物库的意愿都没有因性别、年龄或教育水平而异，但与白人参与者相比，黑人/非洲裔美国人的参与者在统计上不太可能支持参与生物库的意愿。正如在之前的工作中所观察到的那样，黑人/非洲裔美国人的参与者更有可能认可对侵犯信任、隐私或自主权的担忧。然而，虽然与表示支持的人相比，表示反对参加生物样本库的个人在令人沮丧的因素方面没有显着差异，但对激励因素的支持显着减少，包括增加知识、个人利益和义务社区，对于那些没有兴趣参与的人。结论：患有双相情感障碍的黑人/非洲裔美国人更有可能表达对 DNA 和生物样本库研究的担忧。但是，虽然种族是支持或反对双相情感障碍研究生物样本库的一个促成因素，但更突出的是积极动机不足。这些结果强调需要强调对 DNA 研究和生物样本库的当代保护作为一种道德责任，并确定需要以社区为基础的教育干预，以促进对积极利益的更多理解，以激励更多的研究参与。
公共卫生基因组学