Sekendiz, B orcid:0000-0002-5657-0008 ; Introduction: Work placements are an integral part of exercise and sports sciences curriculum. Due to the type and location of these work placements students can often be required to access sensitive client information. There is currently a gap of knowledge about the implications of the privacy laws for exercise and sports sciences work placements and related course work requirements at private sector health service providers such as allied health clinics, fitness facilities or gyms. The aim of this study is to describe the rules for accessing and sharing sensitive client information from the perspectives of the higher education and health service providers within the relevant legal and ethical frameworks that regulate the handling of such personal information by organisations. Methods: The first stage of the study consists of a review of primary sources of law such as the relevant legislation in each jurisdiction, legal principles, and case law. The second stage of the study consists of a review of secondary sources of law such as case digests, text books, and legal peer-reviewed journal articles in order to explain the findings from the first stage of the study. Results: The findings show that regardless of the type and location of exercise and sport science work placements, a person`s right for personal autonomy to know and decide how their personal information will be maintained, used and shared is a protected legal right under the privacy laws. Government health organisations have developed very strict policy and procedures to ensure patient confidentiality during work placements or in medical research including online data security and informed consent. However, the industry standards or practices for handling private and confidential client information at exercise and sport sciences work placements at private health sites is not clear. Conclusion: The higher education providers, industry bodies, and private sector health service providers are urged to work in collaboration to develop and implement risk management strategies to ensure high standards of ethical practice and confidentiality of sensitive client health information are maintained that can support high quality learning outcomes for the work placement students. Future studies that investigate the relationship between the implementation of risk management practices and the perceptions about client privacy at exercise and sport sciences work placements are warranted.
This article explores the relationship between social movements, human rights and law at different scales. I compare 'global constitutionalism' and 'subaltern cosmopolitanism' as approaches to movements, rights and law. As sociologists, we are especially well placed to address certain assumptions on which these inter-disciplinary approaches rely. I argue that assumptions about the relationship between social movements and human rights that are fundamentally normative limit our understanding of the diversity of organisational forms through which human rights are being defined, and of the complexity of multi-scalar law through which claims to justice are being made. In particular, the importance of the state and national law for institutionalising human rights norms should not be neglected by privileging either local or international law as the legitimate focus of democratic claims for justice.
People who inject drugs (PWID) are disproportionately represented among individuals who experience imprisonment and often have more complex physical and mental health needs than people in prison without injecting histories. The trajectories of PWID after prison release are poorly understood, hampering the development of effective strategies to address their distinct health needs. The Prison and Transition Health (PATH) Cohort Study is characterising the post-release trajectories of incarcerated male PWID in Victoria, Australia. We outline study methodology and baseline characteristics of participants prior to their release. Four hundred participants were recruited from three prisons and completed researcher-administered baseline interviews covering socio-demographics, social supports, physical health, mental health, alcohol and other drug use, and pre-release and transitional service utilisation. The median age among participants was 36 years (IQR 30–42), and they reported a median of five (IQR 3–9) previous adult incarcerations. Almost half (49%) were reliant on government payments prior to incarceration. One quarter (25%) of participants reported removal from their parents' care as children and 64% reported being a parent or primary caregiver to children. Most participants (81%) reported a previous mental health diagnosis and 44% reported three or more diagnoses. The most common drugs injected prior to incarceration were crystal methamphetamine (80%) and heroin (62%), and most (85%) reported being under the influence of drugs at the time of committing offences for which they were currently incarcerated. Injecting drug use during their current sentence was reported by 40% of participants, and 48% reported engaging with some form of drug treatment during their current sentence. Study participants are characterised by significant mental health and substance use morbidities, social disadvantage and criminogenic histories that present challenges for the provision of post-release support services. Data from the PATH Cohort Study will help inform strategies to improve the health and social outcomes of this population. ; Full Text
1. Introduction The Faculty of Human Sciences at the University of Bern includes three institutes: the Institute of Educational Science, the Institute of Psychology and the Institute of Sport Science. Research management (FOMA) at the Faculty of Human Sciences aims to support researchers by strengthening excellent research and managing research data ethically in line with the Swiss federal laws and ordinances. We advise researchers where and how, and under which conditions and formats to store their research data, and provide consulting on requirements and best practices for metadata and documentation description, data monitoring and coding of variables. We support with the data management processes, continuous monitoring and updates related to data management plans (DMP), which are required by the Swiss National Science Foundation and EU-Commission. We inform researchers on the legal ordinance of the Swiss Federal Act on Data Protection (FADP) for the ethical management of sensitive data, on the Findable, Accessible, Interoperable, and Reusable (FAIR) data principles and on available IT-solutions in accordance to the General Data Protection Regulations (GDPR). 2. Research Data Data collection and sharing is part of the research projects conducted at the Faculty and therefore need to meet ethical and legal requirements. Collected are either related to clinical studies, which fall under the Federal Act on Research involving Human Beings (HRA, Art. 118b § 1) and require approvals from an ethics committee (e.g., Cantonal Ethic Commission (CEC) or Swissmedic), or studies that do not fall under the HRA and can be reviewed and evaluated by the Ethical Committee experts at the Faculty. Yet, most of the data are personal and health-related personal data, therefore, informed consent, case report forms and homogenized protocols should be taken into consideration in agreement with legislation in Switzerland. Here we give some examples of the ethical data treatment according to good research practices. We face challenges, ...
1. Introduction The Faculty of Human Sciences at the University of Bern includes three institutes: the Institute of Educational Science, the Institute of Psychology and the Institute of Sport Science. Research management (FOMA) at the Faculty of Human Sciences aims to support researchers by strengthening excellent research and managing research data ethically in line with the Swiss federal laws and ordinances. We advise researchers where and how, and under which conditions and formats to store their research data, and provide consulting on requirements and best practices for metadata and documentation description, data monitoring and coding of variables. We support with the data management processes, continuous monitoring and updates related to data management plans (DMP), which are required by the Swiss National Science Foundation and EU-Commission. We inform researchers on the legal ordinance of the Swiss Federal Act on Data Protection (FADP) for the ethical management of sensitive data, on the Findable, Accessible, Interoperable, and Reusable (FAIR) data principles and on available IT-solutions in accordance to the General Data Protection Regulations (GDPR). 2. Research Data Data collection and sharing is part of the research projects conducted at the Faculty and therefore need to meet ethical and legal requirements. Collected are either related to clinical studies, which fall under the Federal Act on Research involving Human Beings (HRA, Art. 118b § 1) and require approvals from an ethics committee (e.g., Cantonal Ethic Commission (CEC) or Swissmedic), or studies that do not fall under the HRA and can be reviewed and evaluated by the Ethical Committee experts at the Faculty. Yet, most of the data are personal and health-related personal data, therefore, informed consent, case report forms and homogenized protocols should be taken into consideration in agreement with legislation in Switzerland. Here we give some examples of the ethical data treatment according to good research practices. We face challenges, leverage strengths and create opportunities by providing data management within the human science disciplines in relation to: Personal and health-personal data: Sociodemographic (date of birth, place of birth, civil status, nationality, old-age and survivor's insurance (OASI); Personality- and ability-related data (workplace-related problems); psychophysiological data such as electroencephalography (EEG) and functional magnetic resonance imaging (fMRI) recordings; mental health-related behaviors and attitudes; anthropometric data: Body Mass Index (BMI), waist circumference, bioimpedance data; cardiovascular data (blood pressure, pulse wave velocity, heart rate variability). Clinical data: Symptom severity and changes during therapy; online-assessments; randomized online studies and surveys; confidentiality agreements; inform consent forms; study protocols; case report forms; monitoring reports. IT- and software applications: Computer games; applications for kids; educational applications; self-help applications; phone applications; survey & interviews (Qualtrics, Atlas.ti); clinical trials and surveys (RedCap, Qualtrics); statistical software (R, Stata, SAS, SPSS). Data format and storage: Anonymised scans (.tiff, .png); tables (.csv encoded in UTF-8); text documents (txt, A/PDF) coded as ASCII; audio (.wav, .mp4); video (.mov, .avi, .mj2, .mkv, FFV1 codec); graphics (HDF5, .svg). Password-protected access for the project principal investigators (PI) and project members. Traceable anonymized data transfer and password-protected access to the encoded data within the project partners. All tablet computers are password-protected, with the experimenters being the only persons to have password-protected access to the data. Information about data collection and documentation, ethical, legal and security issues, data storage and preservation, as well as data sharing and reuse is provided in the data management plans, supporting researchers to design and conduct their projects according to the FAIR principles, legal ordinances and requirements of the national and international funding agencies. 3. Challenges • Where and how to store the identifying data or personal participants' data additionally to separate database with anonymised encoded data? • Possible delays in the study due to amendments to the ethics commissions. • Where is the right place to store encrypted and password-protected video/audio interviews? • Which is the most appropriate Software to use for surveys? • Is it necessary to use licensing under continuous games integration? • Where is the right place to store neurophysiological (EEG- and fMRI) data? • What is the right criteria to use pseudonymisation vs. anonymisation? Encrypted and anonymised interviews are often needed to be pseudonymised (e.g. Olympic champions). • How can video/audio images of interviews be anonymised? If not at all, then what are the possible solutions? 4. Strengths & Opportunities • Use professional software that correspond to the GDPR and store the data within national Swiss data repositories or within European Union. • Follow the Good Clinical Practice (GCP) and International Council for Harmonization of Technical Requirements for Pharmaceuticals for Human Use (ICH) rules and prepare applications for the ethics committees earlier enough by leverage better study planning. • Use collaborative approach at the institutional level and with other research centers to strengthen network. • Follow Open Science strategy by "open data as possible, as close as necessary" under legal ordinance of the FADP for the management of sensitive data ethically based on the FAIR data principles and on available IT-solutions in accordance to the GDPR. • Identify the overall strategy for data management processes before the project starts. Apply for licenses for presentations, talks, developed games, phone applications etc. 5. Collaboration The FOMA data management support at the Faculty is offered in collaboration with the Clinical Trial Unit (CTU, University of Bern); IT-persons of the three research institutes at the Faculty and Ethics Committee at the Faculty; and the Open Science Team at the University of Bern, Switzerland.
In: Bulletin of peace proposals: to motivate research, to inspire future oriented thinking, to promote activities for peace, Band 1, Heft 2, S. 177-186
Two years after artist Mark Farid broadcast all of his digital communications online, in real-time for one month for the project Poisonous Antidote. All of Farid's personal and professional emails, text messages, phone calls, Facebook Messenger, web browsing, locations, Twitter and Instagram posts, as well as any photographs and videos Farid captured. Regardless of the time, duration, or intimacy of the content Mark amassed, there was no restriction on the content publicised. Continuing the theme of the project - just how intimately can you know someone through their only their digital footprint - film-maker, Sophie le Roux collated and assembled the relevant information from Farid's digital footprint to make the Poisonous Antidote film.
The following interview with the Precarious Workers Brigade (PWB) reflects on the theme of collaboration in relation to work, the creative industries and Higher Education. As the PWB outline in their book Training for Exploitation? Politicising Employability & Reclaiming Education, a resource for students, teachers and cultural workers, exploitative labour conditions in the arts are often obscured by claims that celebrate autonomous and independent work. As we discuss below, 'collaboration' might very well operate as a term that ostensibly redeems various forms of exploitation in the cultural sector and higher education. Describing new forms of post-Fordist labour relations, 'collaboration' simultaneously valorises them as expressive of an affectual co-operation.
To coincide with the final reading of the Investigatory Power Bill (Oct 2016), Poisonous Antidote was an online and physical exhibition exploring just how intimately you are able to comprehend a person - their humour, temperament and rationale - through only their digital footprint. From the 1st - 30th September 2016, www.poisonous-antidote.com was a live newsfeed of artist Mark Farid's realtime digital footprint. This included all of his personal and professional emails, text messages, phone calls, Facebook Messenger, web browsing, locations, Twitter and Instagram posts, as well as any photographs and videos Farid captured. Regardless of the time, duration, or intimacy of the content Farid amassed, there was no restriction on the content publicised. Besides the projected display at Gazelli Art House - in collaboration with designer and programmer Vicente Gasco - a 3D printer in the gallery space in London transformed the artist's data at 24-hour intervals, creating an expanding digital landscape: an abstract sculpture formed of 30 unique and adjoining parts, each modelling a day of Farid's digital life.
To coincide with the first draft of the Investigatory Powers Bill (Nov 2015), Data Shadow was an interactive art instillation commissioned by Collusion, in partnership with Arts Council England, the University of Cambridge and The Technology Partnership. Located in All Saints Gardens, Cambridge, all visitors were required to interact independently with the installation, entering one at a time. On entering the 8 x 2m shipping container, the participant was greeted by a woman holding a contract of consent. Until signed, the woman remained silent, directly staring the individual in the eyes (a physical manifestation of Terms & Conditions). Once signed, candidates proceeded to join the WiFi. Participants progressed to the second half of the container, divided by a partitioning door. With sensors tracking the participant's movements, their realtime (digital) shadow was cast by a projection on two, facing walls - one filled with 1000 characters from their most recent text or WhatsApp messages, the other a collage of 64 images from the participant's mobile phone.
How can data science help in common tasks? This talk illustrates the development of a simple data pipeline: collating data from external bodies and then visualising the responses to provide insight. The project success hinged upon the collaboration of subject specialists and data scientists. This cross disciplinary working enabled an efficient data pipeline to be of greatest benefit to stakeholders. Tools used: Microsoft Forms; R; Github. Talk given at a UK Government data science careers event.
