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遗传咨询师在基因检测直接面向消费者营销方面的伦理与临床实践考量

Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests.

作者信息

Wade Christopher H, Wilfond Benjamin S

机构信息

Social and Behavioral Research Branch, National Human Genome Research Institute/NIH, 2 Center Drive, Bethesda, MD 20892-0249, USA.

出版信息

Am J Med Genet C Semin Med Genet. 2006 Nov 15;142C(4):284-92, discussion 293. doi: 10.1002/ajmg.c.30110.

DOI:10.1002/ajmg.c.30110
PMID:17068807
Abstract

Several companies utilize direct-to-consumer (DTC) advertising for genetic tests and some, but not all, bypass clinician involvement by offering DTC purchase of the tests. This article examines how DTC marketing strategies may affect genetic counselors, using available cardiovascular disease susceptibility tests as an illustration. The interpretation of these tests is complex and includes consideration of clinical validity and utility, and the further complications of gene-environment interactions and pleiotropy. Although it is unclear to what extent genetic counselors will encounter clients who have been exposed to DTC marketing strategies, these strategies may influence genetic counseling interactions if they produce directed interest in specific tests and unrealistic expectations for the tests' capacity to predict disease. Often, a client's concern about risk for cardiovascular diseases is best addressed by established clinical tests and a family history assessment. Ethical dilemmas may arise for genetic counselors who consider whether to accept clients who request test interpretation or to order DTC-advertised tests that require a clinician's authorization. Genetic counselors' obligations to care for clients extend to interpreting DTC tests, although this obligation may be fulfilled by referral or consultation with specialists. Genetic counselors do not have an obligation to order DTC-advertised tests that have minimal clinical validity and utility at a client's request. This can be a justified restriction on autonomy based on consideration of risks to the client, the costs, and the implications for society.

摘要

几家公司利用直接面向消费者(DTC)的广告来推广基因检测,其中一些公司(但并非全部)通过提供DTC购买检测服务来绕过临床医生的参与。本文以现有的心血管疾病易感性检测为例,探讨DTC营销策略可能如何影响基因咨询师。这些检测的解读很复杂,包括对临床有效性和实用性的考量,以及基因 - 环境相互作用和基因多效性等进一步的复杂问题。虽然尚不清楚基因咨询师在多大程度上会遇到接触过DTC营销策略的客户,但如果这些策略引发了对特定检测的直接兴趣以及对检测预测疾病能力的不切实际期望,那么它们可能会影响基因咨询互动。通常,通过既定的临床检测和家族史评估可以最好地解决客户对心血管疾病风险的担忧。对于考虑是否接受要求检测解读的客户或订购需要临床医生授权的DTC广告检测的基因咨询师来说,可能会出现伦理困境。基因咨询师照顾客户的义务延伸到解读DTC检测,尽管这一义务可以通过转介或咨询专家来履行。基因咨询师没有义务应客户要求订购临床有效性和实用性极低的DTC广告检测。基于对客户风险、成本以及对社会影响的考虑,这可能是对自主权的合理限制。

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