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给孩子们的遗产——英国老年人对基因检测的态度

A legacy for the children--attitudes of older adults in the United Kingdom to genetic testing.

作者信息

Skirton Heather, Frazier Lorraine Q, Calvin Amy O, Cohen Marlene Z

机构信息

Faculty of Health and Social Work, University of Plymouth, Taunton, UK, and St. Luke's Episcopal Hospital, Houston, TX, USA.

出版信息

J Clin Nurs. 2006 May;15(5):565-73. doi: 10.1111/j.1365-2702.2006.01372.x.

DOI:10.1111/j.1365-2702.2006.01372.x
PMID:16629965
Abstract

AIM

The aim of this study was to assess understanding of genetics and attitudes towards genetic testing for clinical and research purposes in a group of older adults in the UK.

BACKGROUND

Increasingly, genomics will have an impact on the diagnosis, prevention and treatment of common diseases and the prescription of drugs. The chance of being affected by a medical condition increases with age and therefore the use of genetic testing as part of general health-care practice has an impact on the older population.

METHODS

Older adults were recruited to two focus groups (n=7 and n=10 respectively). Focus group discussions were guided by a series of questions and were audiotaped. The transcribed data were coded for significant statements, which were organized under thematic headings.

RESULTS

The mean age of participants was 76 years. The main themes to emerge were: understanding, approach to genetic testing and conditions for testing. In this cohort, the older adults were largely unsure about the underlying scientific basis of genetics but were keen to learn more. While enhanced medical knowledge could enable preventive measures to be taken and so reduce suffering, it was acknowledged that for some people knowing the future could potentially cause anxiety and harm. Participants were wary about research being used to benefit private companies and voiced ethical concerns about potential coercion to be tested and the misuse of science. However, all participants had an altruistic approach that influenced their willingness to be tested to benefit others in their family or the wider community. Conditions for testing included provision of information about the purpose of testing and feedback on the results.

CONCLUSIONS

Older adults are positive about the opportunities presented by genetic testing for clinical reasons and research, but need accurate information about the reasons for and implications of such testing.

RELEVANCE TO CLINICAL PRACTICE

The results of this study confirm the need for nurses to be proactive in developing the genetic competencies required to detect potential familial disease, make appropriate referrals to genetic services and ensure informed consent is obtained for genetic testing.

摘要

目的

本研究旨在评估英国一组老年人对遗传学的理解以及对出于临床和研究目的进行基因检测的态度。

背景

基因组学对常见疾病的诊断、预防和治疗以及药物处方的影响日益增加。受疾病影响的几率会随着年龄增长而增加,因此将基因检测作为常规医疗保健实践的一部分会对老年人群产生影响。

方法

招募老年人参加两个焦点小组(分别为n = 7和n = 10)。焦点小组讨论由一系列问题引导,并进行录音。转录的数据针对重要陈述进行编码,这些陈述按照主题标题进行组织。

结果

参与者的平均年龄为76岁。出现的主要主题有:理解、基因检测方法和检测条件。在这个队列中,老年人大多不确定遗传学的潜在科学基础,但渴望了解更多。虽然增强的医学知识可以采取预防措施从而减轻痛苦,但人们也承认,对一些人来说,知晓未来可能会引发焦虑和伤害。参与者对研究被用于使私人公司受益持谨慎态度,并对潜在的强制检测和科学的滥用表达了伦理担忧。然而,所有参与者都有一种利他主义的态度,这影响了他们为使家人或更广泛社区中的其他人受益而接受检测的意愿。检测条件包括提供检测目的的信息以及检测结果的反馈。

结论

老年人对出于临床原因和研究目的进行基因检测所带来的机会持积极态度,但需要关于此类检测的原因和影响的准确信息。

与临床实践的相关性

本研究结果证实,护士需要积极培养检测潜在家族性疾病、适当转诊至基因服务机构以及确保获得基因检测知情同意所需的基因能力。

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