Gamm Jennifer L, Nussbaum Robert L, Bowles Biesecker Barbara
Children's Hospital Medical Center, Cincinnati, Ohio, USA.
Am J Med Genet A. 2004 Jul 15;128A(2):151-5. doi: 10.1002/ajmg.a.30003.
One purpose of this study was to examine hypothetical interest in genetic predisposition testing for alcoholism among at-risk relatives. Qualitative interviews and several quantitative tools were administered to 27 individuals who had at least one first-degree relative affected by alcoholism. Data analysis revealed that participants' interest in genetic testing for susceptibility to alcoholism was moderate. Lower educational level and a stronger belief in 'others' influencing health were related to participants' having a stronger interest in genetic testing. Participants' concerns about future use of genetic testing ranged from doubts about its usefulness in affecting behavior to apprehension regarding detrimental societal effects such as breaches in confidentiality and fear of being labeled an 'alcoholic.' Younger age and stronger interest in genetic testing were associated with deterministic or fatalistic beliefs, while drinking behaviors, gender, and other demographics were not. Participants questioned the utility of this type of testing. Their interest in testing and concerns about its hypothetical use may prove important for at-risk relatives who may face decisions about genetic testing in the future. Data from this study can provide direction for researchers and health care providers as genetic testing for this and other behavioral conditions emerges. Scientists and the public should address the social concerns expressed by participants, including the fear of labeling. Also, we can begin to anticipate characteristics common in those who may have fatalistic responses, and who may possibly make adverse behavior choices, to results from alcoholism susceptibility testing.
本研究的一个目的是调查有风险的亲属对酒精中毒遗传易感性检测的假设兴趣。对27名至少有一名受酒精中毒影响的一级亲属的个体进行了定性访谈和几种定量工具测试。数据分析显示，参与者对酒精中毒易感性基因检测的兴趣适中。较低的教育水平和对“他人”影响健康的更强信念与参与者对基因检测的更强兴趣相关。参与者对基因检测未来用途的担忧范围从怀疑其对行为影响的有用性到对有害社会影响的担忧，如保密性的泄露以及害怕被贴上“酗酒者”的标签。年龄较小和对基因检测的更强兴趣与决定论或宿命论信念相关，而饮酒行为、性别和其他人口统计学特征则无关。参与者质疑这类检测的效用。他们对检测的兴趣以及对其假设用途的担忧可能对未来可能面临基因检测决策的有风险亲属很重要。随着针对这种及其他行为状况的基因检测出现，本研究的数据可为研究人员和医疗保健提供者提供指导。科学家和公众应该解决参与者表达的社会担忧，包括对标签的恐惧。此外，我们可以开始预测那些可能对酒精中毒易感性检测结果有宿命论反应且可能做出不良行为选择的人所共有的特征。
