How to Design Consent for Health Data Research? An Analysis of Arguments of Solidarity

IF 1.4 3区 哲学 Q2 ETHICS
Svenja Wiertz
{"title":"How to Design Consent for Health Data Research? An Analysis of Arguments of Solidarity","authors":"Svenja Wiertz","doi":"10.1093/phe/phad025","DOIUrl":null,"url":null,"abstract":"The article discusses the impact different concepts of solidarity can have on debates on models of consent for non-interventional research. It introduces three concepts of solidarity that have been referenced in bioethical debates: a purely descriptive concept, a concept that claims some derivative value for most but not all practices of solidarity, as well as a clearly normative concept where solidarity is tied to justice and taken to ground moral duties. It shows that regarding the rivalling models of study-specific consent, tiered consent and broad consent, the first two concepts can be taken to favour tiered consent while only normative solidarity supports a model of broad consent—or an argument to allow non-interventional research without requiring consent at all. As normative solidarity is tied to considerations of justice, however, the argument appears less straightforward than one might expect: It presupposes that the research contributes to overcoming existing social injustices.","PeriodicalId":49136,"journal":{"name":"Public Health Ethics","volume":"12 1","pages":""},"PeriodicalIF":1.4000,"publicationDate":"2023-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Public Health Ethics","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1093/phe/phad025","RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ETHICS","Score":null,"Total":0}
引用次数: 0

Abstract

The article discusses the impact different concepts of solidarity can have on debates on models of consent for non-interventional research. It introduces three concepts of solidarity that have been referenced in bioethical debates: a purely descriptive concept, a concept that claims some derivative value for most but not all practices of solidarity, as well as a clearly normative concept where solidarity is tied to justice and taken to ground moral duties. It shows that regarding the rivalling models of study-specific consent, tiered consent and broad consent, the first two concepts can be taken to favour tiered consent while only normative solidarity supports a model of broad consent—or an argument to allow non-interventional research without requiring consent at all. As normative solidarity is tied to considerations of justice, however, the argument appears less straightforward than one might expect: It presupposes that the research contributes to overcoming existing social injustices.
如何为健康数据研究设计同意书?团结论点分析
文章讨论了不同的团结概念对非干预性研究同意模式辩论的影响。文章介绍了生物伦理辩论中提到的三种团结概念:一种纯粹描述性的概念,一种声称大多数团结实践(而非所有团结实践)具有某种衍生价值的概念,以及一种明确的规范性概念,在这种概念中,团结与正义联系在一起,并被视为道德义务的基础。它表明,在针对特定研究的同意、分层同意和广泛同意这几种相互对立的模式中,前两种概念都可以被视为有利于分层同意,而只有规范性团结支持广泛同意的模式--或者说支持允许进行非干预性研究而无需征得同意的论点。然而,由于规范团结与正义的考虑相联系,这一论点似乎没有人们想象的那么直截了当:它预先假定研究有助于克服现有的社会不公正现象。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
Public Health Ethics
Public Health Ethics PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH-MEDICAL ETHICS
CiteScore
3.10
自引率
9.50%
发文量
28
审稿时长
>12 weeks
期刊介绍: Public Health Ethics invites submission of papers on any topic that is relevant for ethical reflection about public health practice and theory. Our aim is to publish readable papers of high scientific quality which will stimulate debate and discussion about ethical issues relating to all aspects of public health. Our main criteria for grading manuscripts include originality and potential impact, quality of philosophical analysis, and relevance to debates in public health ethics and practice. Manuscripts are accepted for publication on the understanding that they have been submitted solely to Public Health Ethics and that they have not been previously published either in whole or in part. Authors may not submit papers that are under consideration for publication elsewhere, and, if an author decides to offer a submitted paper to another journal, the paper must be withdrawn from Public Health Ethics before the new submission is made. The editorial office will make every effort to deal with submissions to the journal as quickly as possible. All papers will be acknowledged on receipt by email and will receive preliminary editorial review within 2 weeks. Papers of high interest will be sent out for external review. Authors will normally be notified of acceptance, rejection, or need for revision within 8 weeks of submission. Contributors will be provided with electronic access to their proof via email; corrections should be returned within 48 hours.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信