IQ Healthcare, Section of Ethics, Philosophy and History of Medicine, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.
Clin Genet. 2010 Apr;77(4):382-8. doi: 10.1111/j.1399-0004.2009.01323.x. Epub 2009 Dec 10.
Most publications on the ethical aspects of genetic research into Alzheimer's Disease (AD) concentrate on the differences between the opinions of professionals and non-professionals. Differences in rating of morally relevant issues between groups of professionals have not yet been described. A modified Delphi study in two rounds was held to identify differences between groups of experts (i.e. clinicians, representatives of patient organisations, ethicists and persons with a commercial background). The strongest correlation was found between the opinions of ethicists and representatives of patient organisations (0.67) and between clinicians and ethicists (0.62). Moderate correlation (0.55) was found between the opinions of clinicians and representatives of patient organisations. Persons with a commercial background showed a weak correlation with clinicians (0.41), ethicists (0.35) and representatives of patient organisations (0.30). These differences in rating of morally relevant issues between various professional groups are relevant for clinical practice and dementia care, particularly the different rating of prenatal diagnosis found between clinicians and representatives of patient organisations. Interdisciplinary consultations between various professional groups -including at least researchers, clinicians and ethicists -are recommended to guarantee that all considerations will be incorporated into the debate on ethical issues of genetic research into AD.
大多数关于阿尔茨海默病（AD）遗传研究伦理方面的出版物都集中在专业人士和非专业人士意见的差异上。专业人士群体在道德相关问题上的评分差异尚未得到描述。我们进行了两轮改良 Delphi 研究，以确定专家群体（即临床医生、患者组织代表、伦理学家和具有商业背景的人员）之间的差异。伦理学家和患者组织代表的意见（0.67）以及临床医生和伦理学家的意见（0.62）之间存在最强的相关性。临床医生和患者组织代表的意见之间存在中度相关性（0.55）。具有商业背景的人员与临床医生（0.41）、伦理学家（0.35）和患者组织代表（0.30）之间的相关性较弱。不同专业群体在道德相关问题上的评分差异与临床实践和痴呆症护理相关，特别是临床医生和患者组织代表在产前诊断方面的不同评分。建议不同专业群体之间进行跨学科咨询，包括至少研究人员、临床医生和伦理学家，以确保所有考虑因素都纳入 AD 遗传研究的伦理问题的讨论中。
