Is there a duty to participate in digital epidemiology?
AbstractThis paper poses the question of whether people have a duty to participate in digital epidemiology. While an implied duty to participate has been argued for in relation to biomedical research in general, digital epidemiology involves processing of non-medical, granular and proprietary data types that pose different risks to participants. We first describe traditional justifications for epidemiology that imply a duty to participate for the general public, which take account of the immediacy and plausibility of threats, and the identifiability of data. We then consider how these justifications translate to digital ep...
Source: Life Sciences, Society and Policy - May 9, 2018 Category: Medical Ethics Source Type: research
Genomics? That is probably GM! The impact a name can have on the interpretation of a technology
AbstractWe investigate how people form attitudes and make decisions without having extensive knowledge about a technology. We argue that it is impossible for people to carefully study all technologies they encounter and that they are forced to use inferences to make decisions. When people are confronted with an intangible abstract technology, the only visible attribute is the name. This name can determine which inferences a person will use. Considering these inferences is important: first, a name will reach consumers before detailed information, if any, will. Second, if detailed information reaches consumers, the hard-to-c...
Source: Life Sciences, Society and Policy - April 17, 2018 Category: Medical Ethics Source Type: research
Disease detection, epidemiology and outbreak response: the digital future of public health practice
AbstractInequalities persist when it comes to the attention, resource allocation and political prioritization, and provision of appropriate, adequate, and timely health interventions to populations in need. Set against a complex socio-political backdrop, the pressure on public health science is significant: institutions and scientists are accountable for helping to find the origins of disease, and to prevent and respond effectively more rapidly than ever. In the field of infectious disease epidemiology, new digital methods are contributing to a new ‘digital epidemiology’ and are seen as a promising way to increase effe...
Source: Life Sciences, Society and Policy - April 1, 2018 Category: Medical Ethics Source Type: research
Editors introduction: biobanks as sites of bio-objectification
(Source: Life Sciences, Society and Policy)
Source: Life Sciences, Society and Policy - February 21, 2018 Category: Medical Ethics Source Type: research
I ’m shocked: informed consent in ECT and the phenomenological-self
AbstractThis paper argues that phenomenological insights regarding selfhood are relevant to the informed consent process in the treatment of depression using electro-convulsive therapy (ECT). One of the most significant side-effects associated with ECT is retrograde amnesia. Unfortunately, the current informed consent model does not adequately appreciate the full extent in which memory loss disturbs lived-experience. Through the philosophy of Merleau-Ponty, it is possible to appreciate the way in which memory loss affects a person ’s self-experience, with emphasis given to one’s pre-reflective and embodied, relationshi...
Source: Life Sciences, Society and Policy - February 13, 2018 Category: Medical Ethics Source Type: research
Crisis Communication in Public Health Emergencies: The Limits of ‘Legal Control’ and the Risks for Harmful Outcomes in a Digital Age
AbstractCommunication by public authorities during a crisis situation is an essential and indispensable part of any response to a situation that may threaten both life and property. In the online connected world possibilities for such communication have grown further, in particular with the opportunity that social media presents. As a consequence, communication strategies have become a key plank of responses to crises ranging from epidemics to terrorism to natural disaster. Such strategies involve a range of innovative practices on social media. Whilst being able to bring about positive effects, they can also bring about a...
Source: Life Sciences, Society and Policy - February 6, 2018 Category: Medical Ethics Source Type: research
How medical technologies shape the experience of illness
AbstractIn this article we explore how diagnostic and therapeutic technologies shape the lived experiences of illness for patients. By analysing a wide range of examples, we identify six ways that technology can (trans)form the experience of illness (and health). First, technology may create awareness of disease by revealing asymptomatic signs or markers (imaging techniques, blood tests). Second, the technology can reveal risk factors for developing diseases (e.g., high blood pressure or genetic tests that reveal risks of falling ill in the future). Third, the technology can affect and change an already present illness exp...
Source: Life Sciences, Society and Policy - February 3, 2018 Category: Medical Ethics Source Type: research
Unscripted Responsible Research and Innovation: Adaptive space creation by an emerging RRI practice concerning juvenile justice interventions
AbstractEmerging RRI practices have goals with respect to learning, governance and achieving RRI outcomes (action). However, few practices actually achieve the action phase as actors lack room to manoeuvre, and lack guidance on how to move forward because of the inherent unscriptedness of the emerging RRI practice. In this explorative research an emerging RRI practice is studied to identify factors and barriers to the creation of adaptive space, in which actors can be responsive to the other and adapt, and a narrative can be created in the act of doing. This paper describes how formal and informal ways of organizing emergi...
Source: Life Sciences, Society and Policy - January 24, 2018 Category: Medical Ethics Source Type: research
