From "Ought" to "Is": Surfacing Values in Patient and Family Advocacy in Rare Diseases.
From "Ought" to "Is": Surfacing Values in Patient and Family Advocacy in Rare Diseases.
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DOI：
10.1080/15265161.2021.1996801
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发表时间：
2021-12
期刊：
影响因子：
--
通讯作者：
Halley MC
中科院分区：
文献类型：
--
作者：
Halley MC
在本期中，Lynch和同事们（2021）讨论了从美国应对COVID-19大流行的“曲速行动”中吸取的经验教训--既有针对非大流行性疾病该做什么，也有不该做什么。在概述这些经验教训时，作者为寻求在特定疾病领域推进生物医学研究的倡导者和政策制定者提供了一套令人信服且理由充分的建议。他们特别警告，优先考虑抢先体验研究治疗的政策可能会损害收集经验数据以确认安全性和有效性的能力。事实上，他们将一个中心点专门指向倡导者，毫不含糊地指出，“削弱科学可能弊大于利;倡导者不应该呼吁它”（Lynch et al. 2021）。作为一个规范性的声明，这一论断是有充分理由的，大多数伦理学家，政策制定者和科学家可能会同意，包括我自己。然而，为了使这个“应该”走向“是”，我们需要了解个人，机构和社会政治的影响，塑造病人和家庭如何倡导，以及为什么。理解为什么患者和家庭倡导者可能会选择为削弱他们自己事业的长期科学目标的政策辩护，这对于寻求解决方案至关重要。特别是，我们需要考虑（1）在生物医学研究中激励患者和家庭倡导的不同目标和价值观;（2）患者和家庭倡导者的生活经历塑造了他们对医疗保健和生物医学研究机构的态度;（3）当前倡导环境的社会政治维度塑造了倡导者开展工作的激励结构。
In this issue, Lynch and colleagues (2021) discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do for non-pandemic diseases. In outlining these lessons, the authors provide a cogent and well-reasoned set of recommendations for advocates and policymakers seeking to advance biomedical research in a particular disease area. They specifically caution against policies that prioritize early access to investigational therapies in a manner that might compromise the ability to collect empirical data to confirm safety and efficacy. Indeed, they direct a central point specifically at advocates, stating, in no uncertain terms,“Weakening the science is likely to do more harm than good; advocates should not call for it”(Lynch et al. 2021). As a normative statement, this assertion is wellreasoned, and most ethicists, policymakers, and scientists are likely to concur, including myself. However, in order for this “ought” to move toward an “is,” we need to understand the individual, institutional, and sociopolitical influences shaping how patients and families advocate, and for what. Understanding why patient and family advocates might choose to argue for policies that weaken the long-term scientific goals of their own cause is essential to working toward solutions. In particular, we need to consider (1) the varying goals and values motivating patient and family advocacy in biomedical research;(2) the lived experiences of patient and family advocates shaping their attitudes toward healthcare and biomedical research institutions; and (3) the sociopolitical dimensions of the current advocacy environment that shape the incentive structures within which advocates do their work.
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影响因子：
13.4
作者：
Lynch, Holly Fernandez;Caplan, Arthur;Bateman-House, Alison
通讯作者：
Bateman-House, Alison
影响因子：
3.3
作者：
Largent, Emily A.;Pearson, Steven D.
通讯作者：
Pearson, Steven D.
影响因子：
9.1
作者：
Best, Rachel Kahn
通讯作者：
Best, Rachel Kahn
DOI：
10.1007/978-90-481-9485-8_1
发表时间：
2010-01-01
期刊：
RARE DISEASES EPIDEMIOLOGY
影响因子：
--
作者：
Groft, Stephen C.;Posada de la Paz, Manuel
通讯作者：
Posada de la Paz, Manuel
DOI：
10.1038/s41436-020-01069-7
发表时间：
2021-05
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Halley MC;Stanley T;Maturi J;Goldenberg AJ;Bernstein JA;Wheeler MT;Tabor HK
通讯作者：
Tabor HK