The Right to Know and the Right Not to Know Revisited: Part One

Brownsword, Roger; Wale, Jeffrey

doi:10.1007/s41649-017-0012-1

Cited by 11 publications

(8 citation statements)

References 12 publications

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“…Ethical considerations including the fundamental "right to know" and the "right not to know" their individual risk are imperative. [4][5][6][7] Individual choice to participate in a trial may also be influenced by the safety, burden, and anticipated efficacy of the intervention (What?) and the study design (How?…”

Section: Who (Should Be Enrolled)?mentioning

confidence: 99%

Path to Parkinson Disease Prevention

et al. 2022

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Tremendous progress in our understanding of the pathophysiology and clinical manifestations of the prodromal phase of Parkinson disease (PD) offers a unique opportunity to start therapeutic interventions as early as possible to slow or even stop the progression to clinically manifest motor PD. A Parkinson's Prevention Conference, “Planning for Prevention of Parkinson's: A trial design symposium and workshop” was convened to discuss all issues that need to be addressed before the launch of the first PD prevention study. In this review, we summarize the major opportunities and challenges in designing prevention trials in PD, organized by the following critical trial design questions: Who (should be enrolled)? What (to test)? How (to measure prevention)? and the pivotal question, When during the prodromal disease (should we start these trials)? We outline the implications of these questions and their meaning for a responsible, sustainable, and fruitful further planning for prevention trials. Despite the great progress that has been made, it needs to be acknowledged that several queries remain to be carefully considered and addressed because prevention trials are being planned and become a reality.

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Section: Who (Should Be Enrolled)?mentioning

confidence: 99%

Path to Parkinson Disease Prevention

et al. 2022

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“…However, it is the person's right to adhere to such natural therapies, especially when science does not offer any alternative solution and when their life and health are in great danger: when, for example, medical science tells them that they have a number of months left to live, and the person chooses to seek the aid of religious faith or some practices like phytotherapy, natural therapies, yoga, shamanic, which, in certain cases, have been presented as true or false, as being able to contribute to healing and prolonging life or not. The topic of debate is the right to hope, which should be granted to the patient only in conjunction with the right to be informed about their medical condition or to refuse to know (Brownsword & Wale, 2017).…”

Section: The Impact Of Fake News On Public Healthmentioning

confidence: 99%

From Pandemic to Infodemic

Sandu

2020

BRAIN

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In this article we will address the topic of fake news (Peters, 2018), which represents a real threat to society and could be considered a public health issue. The fake news campaign that accompanied public communications during the pandemic was named, by the Worls Health Organization (2020), infodemic, considering that its purpose was to generate panic and create social and economic problems, which would seriously overcome the initial public health problem-namely that of the pandemic-, to destabilize both states and global alliances. From an ethical point of view, we must notice the negative impact of infodemic, both on public health and on humanity in general; this can lead to deviations from democracy and human rights and, ultimately, to the dehumanization of society through the emphasis on social anxiety and the exacerbation of desocializing fears, which increase social distancing far beyond the limit of the physical distancing necessary to combat the pandemic.

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“…In biobank studies, there has been much debate on whether research participants have a right to know (or not to know) information (Ravitsky and Wilfond, 2006 ; Brownsword and Wale, 2017 ), who should be responsible for informing and explaining to participants, to what extent of the result and information should be disclosed, and what criteria should be adopted for returning research results. Moreover, the issue of validity and clinical utility of the research results is also highly relevant as there is a risk of harm due to the premature or inadequate translation of research results (Burke et al, 2010 ).…”

Section: Biobanksmentioning

confidence: 99%