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Planning later life with dementia: comparing family caregivers’ perspectives on biomarkers with laypersons’ attitudes towards genetic testing of dementia prediction
New Genetics and Society ( IF 1.3 ) Pub Date : 2019-07-28 , DOI: 10.1080/14636778.2019.1637719
Zümrüt Alpinar-Sencan 1 , Leopold Lohmeyer 1 , Silke Schicktanz 1
Affiliation  

Predictive medicine presents opportunities to consider later life under conditions of illness, such as dementia. This paper examines how family caregivers (N = 27) assess the opportunity of prediction and early diagnosis of dementia for oneself based on their particular experience. Furthermore, it compares their attitudes with laypersons’ attitudes (N = 43) towards genetic testing of APOE. By this, we elaborate how much personal experience impacts anticipation and affects, but also moral attitudes towards predictive medicine. Differences in our settings do not allow for direct comparison, so our analysis focuses on multiple similarities in the assessments of predictive (non-genetic vs. genetic) testing. Groups’ reasoning showed also differences influenced mainly by personal experience. Family caregivers addressed more responsibility towards family and had more hopes into medical treatments. To cope with the disease, they expressed expectations to start with medicine and care decisions as early as possible. Laypersons, however, stressed self-determination more and expressed worries about the influence of the pharmaceutical industry by referring to unnecessary medication and, implicitly, the medicalization of aging.

中文翻译:

规划老年痴呆症的晚年生活:比较家庭照顾者对生物标志物的看法与非专业人士对痴呆症预测基因检测的态度

预测医学提供了考虑疾病(例如痴呆症)下的晚年生活的机会。本文研究了家庭照顾者 (N = 27) 如何根据他们的特定经验评估自己预测和早期诊断痴呆症的机会。此外,它将他们的态度与非专业人士(N = 43)对 APOE 基因检测的态度进行了比较。通过这一点,我们详细说明了个人经验在多大程度上影响了预期和影响,以及对预测医学的道德态度。我们设置的差异不允许直接比较,因此我们的分析侧重于预测性(非遗传与遗传)测试评估中的多个相似性。群体的推理也表现出主要受个人经验影响的差异。家庭照顾者对家庭承担更多责任,对医疗更有希望。为了应对这种疾病,他们表示希望尽早开始药物和护理决策。然而,外行更多地强调自决,并通过提及不必要的药物治疗以及隐含的衰老医学化来表达对制药业影响的担忧。
更新日期:2019-07-28
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