Personal genomics: information can be harmful

Personal genomics: information can be harmful
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个人基因组学:信息可能有害

DOI:
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发表时间:
2010
影响因子:
5.5
通讯作者:
Muin J Khoury
Muin J Khoury
中科院分区:
医学3区
文献类型:
--
作者:
D. Ransohoff;Muin J Khoury

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信息通常被认为是好东西。信息当然可以通过一些基于信息的行动带来好处。但是,行动也可能导致伤害。我们不仅从日常经验和常识中了解危害,而且从临床医学领域了解危害。在临床医学中,权衡利弊的方法已经被开发出来,以帮助医生、患者和决策者决定是否获取以及如何使用某些类型的信息。当个人基因组学用于改善健康和预防疾病时,与信息的利与害相关的基本问题与临床医学领域的预防完全相同。如果关于风险或预后的信息在临床医学中可能是有害的,那么仅仅因为健康信息是“基因组信息”就有区别吗?Gulcher和Stefansson在本期的《华尔街日报》中指出,从对常见复杂疾病的遗传因素的不断发现中获得的遗传风险信息,现在可以用于预防和早期发现。他们认为,基于这些发现的风险评估测试是更具成本效益的工具,可以优先利用稀缺资源,解决常见、昂贵和致命的常见疾病。他们认为,早期检测的潜在好处是直观的,生物学上合理的,通常有利于医疗保健利用和个人决策;我们认为,在将此类检测用于健康人群之前,需要在适当设计的研究中明确考虑和评估此类检测的潜在危害。在这篇评论中,我们认为用于健康促进或预防的个人基因组信息既可以带来好处,也可以带来坏处;我们简要地描述了临床医学领域是如何制定评估利弊的原则和过程的;我们表明,用于健康促进和预防的基因组信息与其他类型的“临床”信息没有什么不同,应该受到同样的证据考虑。我们的基本论点是,在个人基因组学测试在人群中广泛使用之前,需要通过研究来评估遗传信息的相对利弊,来严格探索个人基因组学对健康有益的假设。信息会造成伤害
Information is generally considered a good thing. Information may of course lead to benefit through some action based on information. But, action can also lead to harm. We know about harm not only from everyday experience and common sense but also from the field of clinical medicine. Approaches to weigh harm vs. benefit have been developed in clinical medicine to aid doctors, patients and policy-makers in deciding whether to obtain and how to use certain kinds of information. When personal genomics is used to improve health and prevent disease, the fundamental issues relating to benefit and harm of information are exactly the same as in the clinical medicine field of prevention. If information about risk or prognosis can be harmful in clinical medicine, is there a difference just because the health information is ‘genomic?’ In this issue of the Journal, Gulcher and Stefansson argue that genetic risk information obtained from ongoing discoveries of genetic factors for common complex diseases can be useful for prevention and early detection now [1]. They make the case that risk assessment tests based on these discoveries represent tools for more cost-effective prioritization of scarce resources to address common and costly and deadly common diseases. They make the case that potential benefits of early detection are intuitive, biologically plausible and generally good for healthcare utilization and individual decision making; we contend that potential harms of such tests need to be explicitly considered and evaluated in appropriately designed studies before such tests are used on a population-wide basis in otherwise healthy people. In this commentary, we suggest that personal genomic information used for health promotion or prevention can cause both benefits and harms; we describe briefly how the field of clinical medicine has developed principles and processes to assess benefits vs. harms; and we show that genomic information used in health promotion and prevention is no different from other kinds of ‘clinical’ information and should be subjected to the same kinds of evidentiary considerations. Our fundamental argument is that the presumption of health benefits from personal genomics needs to be rigorously explored using research to assess the relative benefits and harms of genetic information before such tests become widely available in the population. Information can cause harm
DOI: 10.1001/jama.2008.803
发表时间: 2008-12-10
影响因子: 120.7
作者:
McGuire, Amy L.;Burke, Wylie
通讯作者: Burke, Wylie
DOI: 10.1016/s0090-4295(99)80122-8
发表时间: 1995-06-01
期刊: UROLOGY
影响因子: 2.1
作者:
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通讯作者: WENNBERG, J
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DOI: 10.1016/j.gastro.2005.05.055
发表时间: 2005
期刊: Gastroenterology.
影响因子: --
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Shaheen,NicholasJ;Green,Bryan;Medapalli,RajK;Mitchell,KateL;Wei,JeffreyT;Schmitz,SarahM;West,LindsayM;Brown,Alphonso;Noble,Marc;Sultan,Shahnaz;Provenzale,Dawn
通讯作者: Provenzale,Dawn