Laskey Sara L, Williams Joseph, Pierre-Louis Jacqui, O'Riordan MaryAnn, Matthews Anne, Robin Nathaniel H
Department of Genetics, Case Western Reserve University School of Medicine, University Hospitals of Cleveland, Cleveland, Ohio, USA.
Genet Med. 2003 Jan-Feb;5(1):49-54. doi: 10.1097/00125817-200301000-00008.
Genetic research is progressing at a rapid rate. While most view genetic advances favorably, concerns regarding eugenics and discrimination based on genetic test results have been raised. These concerns have been found among all groups studied; however, they have particular relevance for members of the African American community. Studies have shown that because of a long history of negative experiences, African Americans have a general mistrust of the medical establishment. It is unclear whether these negative attitudes encompass genetic advances. Because there is little empiric data in the literature, it is not known whether African Americans have a positive view of genetic advances or whether they have the same level of mistrust as is seen in their attitudes toward other forms of biomedical research.
This study was conducted as an initial effort to examine the attitudes of African Americans toward recent genetic advances and, specifically, genetic testing. A cohort of 97 college-age minority students, including 78 African Americans, participating in the Health Career Enhancement for Minorities Program (HCEM) at Case Western Reserve University were surveyed. Surveys were made available before and after the summer long course, which included five lectures on basic genetic principles and medical genetics.
Both African American students and other minority students initially (questionnaire prior to HCEM course) had an overall positive view of genetic testing. The vast majority supported genetic testing for preventive care (95%) and presymptomatic detection of disease (88%) and agreed that it should be easily available (83%). However, several concerns were expressed as well, including fears about discrimination (68%), privacy (68%), that abortions will become more common (51%), and eugenics (37%). It is interesting that in the postcourse questionnaire, the percentages of positive views remained similar to those of the precourse survey, but the number of respondents expressing concerns increased.
These results suggest that the minority students surveyed view many aspects of genetic testing and other advances favorably. However, these students expressed concerns about discrimination, privacy, and eugenics. These concerns were increased, not lessened, by exposure to genetics education. One possible explanation for this observation is that the students had a greater understanding of the issues regarding genetic testing after the HCEM lectures and discussion. Of note, there was a greater negative response toward genetic screening programs among the African American students compared with the non-African American minority students. This suggests that the negative attitudes of African Americans toward biomedical research do extend to some aspects of genetics and that educational programs must be designed and implemented if this community is going to receive the maximum benefits of this advancing technology.
基因研究正在迅速发展。虽然大多数人对基因进展持乐观态度,但对优生学以及基于基因检测结果的歧视问题也引发了担忧。在所有研究的群体中都发现了这些担忧;然而,它们对非裔美国人群体成员具有特殊的相关性。研究表明,由于长期的负面经历,非裔美国人对医疗机构普遍不信任。尚不清楚这些负面态度是否涵盖基因进展。由于文献中实证数据很少,所以不清楚非裔美国人对基因进展是持积极看法,还是他们像对其他形式的生物医学研究那样持有相同程度的不信任。
本研究是一项初步尝试,旨在考察非裔美国人对近期基因进展,特别是基因检测的态度。对97名大学年龄的少数族裔学生进行了调查,其中包括78名非裔美国人,他们都参加了凯斯西储大学的少数族裔健康职业提升项目(HCEM)。在为期一个夏天的课程前后进行了调查,该课程包括五场关于基本遗传原理和医学遗传学的讲座。
非裔美国学生和其他少数族裔学生最初(HCEM课程前的问卷)对基因检测总体上持积极看法。绝大多数人支持将基因检测用于预防保健(95%)和疾病的症状前检测(88%),并同意应该容易获得基因检测(83%)。然而,也表达了一些担忧,包括对歧视(68%)、隐私(68%)、堕胎将变得更加普遍(51%)以及优生学(37%)的担忧。有趣的是,在课程后的问卷中,积极看法的百分比与课程前调查的百分比相似,但表达担忧的受访者数量增加了。
这些结果表明,接受调查的少数族裔学生对基因检测和其他进展的许多方面持积极看法。然而,这些学生表达了对歧视、隐私和优生学的担忧。通过接受基因教育,这些担忧增加了,而不是减少了。对这一观察结果的一种可能解释是,学生们在HCEM讲座和讨论后对基因检测问题有了更深入的理解。值得注意的是,与非非裔美国少数族裔学生相比,非裔美国学生对基因筛查项目的负面反应更大。这表明非裔美国人对生物医学研究的负面态度确实延伸到了遗传学的某些方面,并且如果这个群体要从这项不断发展的技术中获得最大利益,就必须设计和实施教育项目。