1,721,047 research outputs found
Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem
Full text linkPsychiatric research traditionally relies on subjective observation, which is time-consuming and labor-intensive. The widespread use of digital devices, such as smartphones and wearables, enables the collection and use of vast amounts of user-generated data as “digital biomarkers.” These tools may also support increased participation of psychiatric patients in research and, as a result, the production of research results that are meaningful to them. However, sharing mental health data and research results may expose patients to discrimination and stigma risks, thus discouraging participation. To earn and maintain participants' trust, the first essential requirement is to implement an appropriate data governance system with a clear and transparent allocation of data protection duties and responsibilities among the actors involved in the process. These include sponsors, investigators, operators of digital tools, as well as healthcare service providers and biobanks/databanks. While previous works have proposed practical solutions to this end, there is a lack of consideration of positive data protection law issues in the extant literature. To start filling this gap, this paper discusses the GDPR legal qualifications of controller, processor, and joint controllers in the complex ecosystem unfolded by the integration of digital biomarkers in psychiatric research, considering their implications and proposing some general practical recommendations
Appropriate Safeguards and Article 89 of the GDPR:Considerations for Biobank, Databank and Genetic Research
Full text linkThe collection and use of biological samples and data for genetic research, or for storage in a biobank or databank for future research, impacts upon many fundamental rights, including the right to dignity, the right to private and family life, the right to protection of personal data, the right to freedom of arts and sciences, and the right to non-discrimination. The use of genetic data and other health-related data in this context must be used in a manner that is rooted in human rights. Owing in part to the General Data Protection Regulation (GDPR) coming into force, the right to the protection of personal data in the context of scientific research has been afforded increasing attention. The GDPR gives effect to the right to data protection, but states that this right must be balanced against other rights and interests. The GDPR applies to all personal data, with specific attention to special categories of data, that includes health and genetic data. The collection, access to, and sharing of such data must comply with the GDPR, and therefore directly impacts the use of such data in research. The GDPR does provide for several derogations and exemptions for research from many of the strict processing requirements. Such derogations are permitted only if there are appropriate safeguards in place. Article 89 states that to be appropriate, safeguards must be "in accordance" with the GDPR "for the rights and freedoms of the data subject". In particular, those safeguards must ensure "respect for the principle of data minimisation". Despite the importance of safeguards, the GDPR is silent as to the specific measures that may be adopted to meet these requirements. This paper considers Article 89 and explores safeguards that may be deemed appropriate in the context of biobanks, databanks, and genetic research.</p
Framing exposure to excessive and improper lighting as light-public health
Full text linkExcessive or improper lighting can affect human health and well-being. However,lighting is seldom considered within frameworks analyzing the interrelationsbetween the urban environment and the health and well-being of communities.Lighting-related concerns are often conceptualized and discussed in environmentalterms through the light pollution frame. Positively, this frame emphasizes humanresponsibility for the environmental detriment and animal harm caused by lightingand promotes the discussion of aesthetics and existential dimensions connected tonocturnal darkness. Negatively, it is flawed with epistemological shortcomings andnormativity; it is prone to the risk of ideological and political polarisation and tendsto underemphasize the health implications of excessive and improper lighting. Thisstudy addresses this gap by arguing for the advantages of a public health framing oflighting-related concerns. In particular, it highlights how this perspective can bettercapture the health implications of lighting and inform urban policies. Placing lightconcerns within a public health framework entails presenting a relatively knownlandscape that resonates with the value systems of virtually everyone. This approachsupports the creation of a common, multi-stakeholder space in discussions onlighting policies, balancing considerations of urban security, safety, inclusivity, andaccessibility as different dimensions of diverse populations’ health and well-being.By emphasizing the public health dimension, this study contributes to the discourseon lighting as a determinant of health and well-being. Such a holistic frameworkaligns with the United Nations Sustainable Development Goal 3 on good health andwell-being by fostering conditions that advance health for all, addressing lighting notmerely as an environmental issue but as a critical public health priority
Editorial : Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators
No full textBiobanking across borders: the challenges of harmonisation
No full textThe development of national initiatives in biobanking in countries such as Iceland, Estonia, and the UK, has given rise to a great deal of social, legal and ethical discussion over the past decade and mor
A participatory space beyond the "autonomy versus property" dichotomy
No full textWithin the normative puzzles that have formed around the biobanking of human biological materials (HBMs) and information, two strategies have been adopted in the US and in Europe; these are distinguished by their focus on two main legal concepts: individual property rights and individual autonomy – mostly interpreted as the right to privacy. The US addressed the question of proprietary interests in the human body materials explicitly and directly. In fact, the U.S. justice system has always explicitly defined the question in terms of property, removing privacy from the equation essentially as a way to “avert the danger” of the proprietary issue. The tendency has always been to negate the uncertain “proprietary interests” associated with the bodies of private citizens, and to use the much stronger and more consolidated "proprietary rights", meaning intellectual property; or else to justify the acquisition of control over the HBMs by research and market structures through a presumption of donation and subsequent abandonment of human tissues by the sources of those tissues. In Europe, the approach went instead in the direction of removing the corporeity of HBMs, seeing them instead as symbolically representing the most secure limits of human dignity, according to which the body is “priceless.” The opaqueness and unworkability of this is made clear by the fact that negation of the marketability of the body went hand in hand with the institutionalization of the European tissue market. There are two inconvenient principles inherent in these two perspectives. The first is the reduction of the means of control of HBMs to one proprietary, operative model, where all powers are allocated to the owner-subject and the object in itself lacks any ultimate value, be it individual or even social. This model has demonstrable limits which can be seen, for example, if it is applied to the environment, which has several affinities with the theme of tissues. The second principle concerns the misleading prevalence of language of individual autonomy, when the actual values in question instead reflect public space, collective dimensions, and a sense of scientific citizenship – which are taken as recognition of the rights of citizens to participate, even if it is epistemic, in public decisions
Going Beyond Counting First Authors in Author Co-citation Analysis
Full text linkThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Full text link“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
Full text linkWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
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