The Obligation to Participate in Biomedical Research

Schaefer, G. Owen; Emanuel, Ezekiel J.; Wertheimer, Alan

doi:10.1001/jama.2009.931

Cited by 132 publications

(98 citation statements)

References 47 publications

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“…By ensuring users' rights are respected, we are promoting a culture of e-trust (Taddeo and Floridi 2011), a much needed value in today's research environment which can promote the willingness of the general population to participate in more research projects aiming at societal benefits (Schaefer et al 2009). Indirectly, a usercentric approach to ethics could also have implications for educating the public-and gatekeepers-by providing them with good exemplars for future practice.…”

Section: Resultsmentioning

confidence: 99%

Accessing Online Data for Youth Mental Health Research: Meeting the Ethical Challenges

et al. 2017

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This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics (Markham and Buchanan 2012) when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental Health (DMH) services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users' expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research that includes vulnerable young people as research participants in an ethical manner. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users' control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and 'read more' options (Bergin and Harding 2016).

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Section: Resultsmentioning

confidence: 99%

Accessing Online Data for Youth Mental Health Research: Meeting the Ethical Challenges

et al. 2017

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“…The value of advancing medical and public health knowledge through secondary analysis of H-IoT data must be taken seriously [10]. At the same time, protecting the interests of individuals is undoubtedly important.…”

Section: Facilitate Public Health Actions and User Engagement With Rementioning

confidence: 99%

“…Proposals for automatic or prompted sharing can be justified by moral obligations between patients and medicine as a practice: a non-binding "duty to participate" has, for example, been previously advanced in medical ethics [10][11][12]. Without taking a position on the validity of such a duty, respect for user autonomy suggests options should be provided for users to easily share their data with researchers according to personal preference.…”

Section: Facilitate Public Health Actions and User Engagement With Rementioning

confidence: 99%

Designing the Health-related Internet of Things: Ethical Principles and Guidelines

Mittelstadt

2017

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Abstract:The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols.

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“…benefit from generalizable biomedical knowledge, it is argued, we have a duty to contribute to the advancement of such knowledge by participating in biomedical research (Schaefer, Emanuel, and Wertheimer 2009). Again, this implicitly could require persons to allow post mortem removal of their body material for research.…”

Section: Duty To Contribute To the Maintenance Of Public Goodsmentioning

confidence: 99%

Governing the Postmortem Procurement of Human Body Material for Research

Assche¹,

Capitaine²,

Pennings³

et al. 2015

ken

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Human body material removed post mortem is a particularly valuable resource for research. Considering the efforts that are currently being made to study the biochemical processes and possible genetic causes that underlie cancer and cardiovascular and neurodegenerative diseases, it is likely that this type of research will continue to gain in importance. However, post mortem procurement of human body material for research raises specific ethical concerns, more in particular with regard to the consent of the research participant. In this paper, we attempt to determine which consent regime should govern the post mortem procurement of body material for research. In order to do so, we assess the various arguments that could be put forward in support of a duty to make body material available for research purposes after death. We argue that this duty does in practice not support conscription but is sufficiently strong to defend a policy of presumed rather than explicit consent.

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The Obligation to Participate in Biomedical Research

Cited by 132 publications

References 47 publications

Accessing Online Data for Youth Mental Health Research: Meeting the Ethical Challenges

Accessing Online Data for Youth Mental Health Research: Meeting the Ethical Challenges

Designing the Health-related Internet of Things: Ethical Principles and Guidelines

Governing the Postmortem Procurement of Human Body Material for Research

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