Segal Mary E, Polansky Marcia, Sankar Pamela
Institute on Disabilities, Temple University, Philadelphia Research Center for Health Care Decision-making, Wyndmoor.
Int J Pediatr Obes. 2007;2(1):11-21. doi: 10.1080/17477160601127921.
We explored personal attitudes about genetic testing of children for obesity risk among parents of overweight children. We also gathered telephone opinions from the parents and from obese adults about policy related to such genetic testing.
We conducted three parents' focus groups, during which they produced numerical ratings on whether they would want their children to be tested according to scenarios in which 1) genetically-targeted drug treatment would be available, 2) a positive test would be associated with a prognosis for developing diabetes, or 3) neither of these. Quantitative data were also gathered during follow-up calls.
Parents were more likely to want testing for their children under the first two scenarios, although there was interest in the third scenario, particularly among separated/divorced parents, and those whose children were not dieting. Even if treatment were not available, more than three-quarters believed testing should be available, more than one-third of them at birth. The youngest child age to divulge a positive result, on average, was 10 years. A primary reason was the perceived helpfulness of the result in framing behavior of both parent and child in preventing development of obesity. Respondents generally failed to perceive the possible negative consequences of a positive test result, insufficiently to consider implications of a negative result.
Additional research is required in order to understand the best ways to educate parents about genetic testing for obesity risk, given the strong interest shown in having such testing available and divulging results to minor children.
我们探讨了超重儿童家长对其子女进行肥胖风险基因检测的个人态度。我们还收集了家长和肥胖成年人对与此类基因检测相关政策的电话意见。
我们组织了三场家长焦点小组讨论,期间他们根据以下三种情况对是否希望自己的孩子接受检测给出了数值评分:1)有针对基因的药物治疗;2)检测呈阳性与患糖尿病的预后相关;3)以上两种情况都不存在。在后续电话随访中也收集了定量数据。
在前两种情况下,家长更倾向于让孩子接受检测,不过对第三种情况也有兴趣,特别是离异/分居的家长以及孩子没有节食的家长。即使没有治疗方法,超过四分之三的家长认为应该提供检测,其中超过三分之一的家长希望孩子一出生就接受检测。平均而言,透露检测阳性结果的最小孩子年龄为10岁。一个主要原因是家长认为检测结果有助于引导家长和孩子的行为以预防肥胖。受访者普遍没有意识到检测阳性结果可能带来的负面后果,也没有充分考虑检测阴性结果的影响。
鉴于家长对进行此类检测并向未成年子女透露结果表现出浓厚兴趣,需要开展更多研究以了解向家长普及肥胖风险基因检测的最佳方式。