Genetic Information Altruists: How Far and To Whom Does Their Generosity Extend?
Genetic Information Altruists: How Far and To Whom Does Their Generosity Extend?
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发表时间：
2009
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通讯作者：
Catherine L. Anderson;Ritu Agarwal
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作者：
Catherine L. Anderson;Ritu Agarwal
人们普遍认为，围绕电子健康记录核心基础构建的医疗保健数字化是不可避免的（美国再投资和复苏法案，2009 年）。数字个人健康数据的捕获预计将提高效率、护理质量并增强临床发现；最终形成了未来的愿景：医疗服务是针对个人而不是广大人群量身定制的。伴随这些发展而来的是关于数字化健康信息的隐私和安全的日益激烈的公众辩论。在某种程度上，发现新药、开发新疗法以及了解现有治疗方案的效果需要高度精细的基因组数据，除非个人自愿分享其个人遗传信息，否则个性化医疗的承诺就无法实现。我们以利他主义、关系导向和承诺理论为核心概念基础，研究了个人在决定向医疗保健价值链中的不同利益相关者（例如医院、制药公司、政府/公共卫生机构）披露出于研究目的而确定的个人遗传信息时，在利他主义和自身利益之间做出的复杂权衡。根据提出请求的利益相关者以及基于互动水平和由此产生的信任和承诺的个人与目标实体的亲密程度，利他主义以及货币和非货币激励对披露意愿的影响可能会有所不同。我们使用准实验调查方法，使用来自全国代表性样本的 1,089 名受访者的数据来测试我们的理论。研究结果表明，利他主义的影响取决于具体情况。虽然激励措施被证明是消费者愿意提供服务的积极动力，与“动机拥挤”的论点一致，但我们发现，当医院向消费者提出要求时，货币激励会削弱利他主义的积极影响，而非货币激励则具有相反的效果。讨论了理论和政策含义。
It is becoming widely accepted that the digitization of healthcare, constructed around a core foundation of electronic health records, is inevitable (American Reinvestment and Recovery Act, 2009). The capture of digital personal health data is expected to drive efficiency, quality of care, and enhanced clinical discovery; culminating in a vision of the future where medical care is tailored to individuals rather than broad populations. Accompanying these developments is an increasingly strident public debate on the privacy and security of digitized health information. To the extent that discovering new drugs, developing new therapies, and understanding the effects of existing treatment regimens requires highly granular genomic data, the promise of personalized medicine cannot be realized unless individuals voluntarily share their personal genetic information. Using theories of altruism, relationship orientation, and commitment as the core conceptual foundations, we investigate the complex trade-off that individuals make between altruism and self-interest in their decision to disclose identified personal genetic information for research purposes to different stakeholders in the healthcare value chain (e.g. hospitals, pharmaceutical companies, government/public health agencies). Depending on the requesting stakeholder and how close the individual feels to the target entity based on levels of interaction and resultant trust and commitment, the influence of altruism and monetary and non-monetary incentives on willingness to disclose is likely to differ. We test our theory with data from 1,089 respondents from a nationally representative sample using a quasi-experimental, survey methodology. Findings suggest the effects of altruism are situational dependent. While incentives were shown to be positive motivators for consumers in their willingness to provide access, consistent with the “motivational crowding” argument, we find that monetary incentives detract from the positive influence of altruism when hospitals make requests to consumers while nonmonetary incentives have the opposite effect. The theoretical and policy implications are discussed.