“Data is the new oil”: citizen science and informed consent in an era of researchers handling of an economically valuable resource

Author:

Quigley Etain,Holme Ingrid,Doyle David M.,Ho Aileen K.,Ambrose Eamonn,Kirkwood Katie,Doyle Gerardine

Abstract

AbstractAs with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered.

Funder

Horizon 2020 Framework Programme

Publisher

Springer Science and Business Media LLC

Subject

Management, Monitoring, Policy and Law,Philosophy,Biochemistry, Genetics and Molecular Biology (miscellaneous)

Reference32 articles.

1. Art. 4(1) GDPR – Conditions for consent | General Data Protection Regulation (GDPR) [Internet]. 2018 General Data Protection Regulation (GDPR). [cited 2 May 2019]. Available from: https://gdpr-info.eu/art-4-gdpr/

2. Art. 4(5)GDPR – Conditions for consent | General Data Protection Regulation (GDPR) [Internet]. 2018 General Data Protection Regulation (GDPR). [cited 2 May 2019]. Available from: https://gdpr-info.eu/art-4-gdpr/

3. Art. 5(1)(b) GDPR – Conditions for consent | General Data Protection Regulation (GDPR) [Internet]. 2018 General Data Protection Regulation (GDPR). [cited 2 May 2019]. Available from: https://gdpr-info.eu/art-5-gdpr/

4. Art. 7 GDPR – Conditions for consent | General Data Protection Regulation (GDPR) [Internet]. 2018 General Data Protection Regulation (GDPR). [cited 2 May 2019]. Available from: https://gdpr-info.eu/art-7-gdpr/

5. Bombard, Yvonne, Gerry Veenstra, Jan M. Friedman, Susan Creighton, Lauren Currie, Jane S. Paulsen, Joan L. Bottorff, and Michael R. Hayden. 2009. Perceptions of genetic discrimination among people at risk for Huntington's disease: A cross sectional survey. Bmj 338: b2175.

Cited by 9 articles. 订阅此论文施引文献 订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3