Longitudinal study of informed consent in innovative therapy research: experience and provisional recommendations from a multicenter trial of intracerebral grafting.

BACKGROUND: There is an urgent need to assess and improve the consent process in clinical trials of innovative therapies for neurodegenerative disorders. METHODS: We performed a longitudinal study of the consent of Huntington's disease patients during the Multicenter Fetal Cell Intracerebral Grafting Trial in Huntington's Disease (MIG-HD) in France and Belgium. Patients and their proxies completed a consent questionnaire at inclusion, before signing the consent form and after one year of follow-up, before randomization and transplantation. The questionnaire explored understanding of the protocol, satisfaction with the information delivered, reasons for participating in the trial and expectations regarding the transplant. Forty-six Huntington's disease patients and 27 proxies completed the questionnaire at inclusion, and 27 Huntington's disease patients and 16 proxies one year later. RESULTS: The comprehension score was high and similar for Huntington's disease patients and proxies at inclusion (72.6% vs 77.8%; P > 0.1) but only decreased in HD patients after one year. The information satisfaction score was high (73.5% vs 66.5%; P > 0.1) and correlated with understanding in both patients and proxies. The motivation and expectation profiles were similar in patients and proxies and remained unchanged after one year. CONCLUSIONS: Cognitively impaired patients with Huntington's disease were capable of consenting to participation in this trial. This consent procedure has presumably strengthened their understanding and should be proposed before signing the consent form in future gene or cell therapy trials for neurodegenerative disorders. Because of the potential cognitive decline, proxies should be designated as provisional surrogate decision-makers, even in competent patients

Paying for free delivery: dependent self-employment as a measure of precarity in parcel delivery

This article explores supply chain pressures in parcel delivery and how the drive to contain costs to ‘preserve value in motion’, including the costs of failed delivery, underpins contractual differentiation. It focuses on owner-drivers and home couriers paid by delivery. It considers precarity through the lens of the labour process, while locating it within the supply chain, political economy and ‘instituted economic process’ that define it. Focus on the labour process shows how ‘self-employment’ is used to remove so-called ‘unproductive’ time from the remit of paid labour. Using Smith’s concept of double indeterminacy the article captures the dynamic relationship between those on standard and non-standard contracts and interdependency of effort power and mobility power. It exposes the apparent mobility and autonomy of dependent selfemployed drivers while suggesting that their presence, alongside the increased use of technology, reconfigures the work-effort bargain across contractual status

In, Against and Beyond Precarity: Work in Insecure Times

In this Foreword to the special issue ‘In, Against and Beyond Precarity’ the guest editors take stock of the existing literature on precarity, highlighting the strengths and limitations of using this concept as an analytical tool for examining the world of work. Concluding that the overstretched nature of concept has diluted its political effectiveness, the editors suggest instead a focus on precarization as a process, drawing from perspectives that focus on the objective conditions, as well as subjective and heterogeneous experiences and perceptions of insecure employment. Framed in this way, they present a summary of the contributions to the special issue spanning a range of countries and organizational contexts, identifying key drivers, patterns and forms of precarization. These are conceptualized as implicit, explicit, productive and citizenship precarization. These forms and patterns indicate the need to address precariousness in the realm of social reproduction and post-wage politics, while holding these in tension with conflicts at the point of production. Finally, the guest editors argue for a dramatic re-think of current forms of state and non-state social protections as responses to the precarization of work and employment across countries in both the Global ‘North’ and ‘South’

Dependent self-employment: workers between employment and self-employment in the UK

Analysing the British Labour Force Survey, we highlight that dependent self-employed workers constitute a group distinct from both employees and independent self-employed workers in the labour market group. Dependent self-employed workers show characteristics of a more volatile labour market attachment than employed or self-employed workers. We provide empirical evidence that dependent self-employed workers are rather pushed than pulled into this labour market status, making dependent self-employment an example of 'necessity' rather than 'opportunity' entrepreneurship. Although data limitations only allow a limited longitudinal analysis, we provide evidence that the majority of dependent self-employed workers remain in the labour market in the short run - either as self-employed or employed - and that only few leave the labour market. In addition, dependent self-employment does not create jobs for others; in our data, dependent self-employed individuals stop being dependent and self-employed because they increase their customer base or return to paid employment

Ethical principles in machine learning and artificial intelligence: cases from the field and possible ways forward

Decision-making on numerous aspects of our daily lives is being outsourced to machine-learning algorithms and artificial intelligence (AI), motivated by speed and efficiency in the decision process. Machine learning (ML) approaches - one of the typologies of algorithms underpinning artificial intelligence - are typically developed as black boxes. The implication is that ML code scripts are rarely scrutinised; interpretability is usually sacrificed in favour of usability and effectiveness. Room for improvement in practices associated with programme development have also been flagged along other dimensions, including inter alia fairness, accuracy, accountability, and transparency. In this contribution, the production of guidelines and dedicated documents around these themes is discussed. The following applications of AI-driven decision making are outlined: a) Risk assessment in the criminal justice system, and b) autonomous vehicles, highlighting points of friction across ethical principles. Possible ways forward towards the implementation of governance on AI are finally examined

Revisiting the university front

dc.subject: Postdemocracy / Public function of the university / Governance / Knowledge society / research university / Managerialism / Academic audit / Quality contro

The meta-crisis of secular capitalism

The current global economic crisis concerns the way in which contemporary capitalism has turned to financialisation as a double cure for both a falling rate of profit and a deficiency of demand. Although this turning is by no means unprecedented, policies of financialisation have depressed demand (in part as a result of the long-term stagnation of average wages) while at the same time not proving adequate to restore profits and growth. This paper argues that the current crisis is less the ‘normal’ one that has to do with a constitutive need to balance growth of abstract wealth with demand for concrete commodities. Rather, it marks a meta-crisis of capitalism that is to do with the difficulties of sustaining abstract growth as such. This meta-crisis is the tendency at once to abstract from the real economy of productive activities and to reduce everything to its bare materiality. By contrast with a market economy that binds material value to symbolic meaning, a capitalist economy tends to separate matter from symbol and reduce materiality to calculable numbers representing ‘wealth’. Such a conception of wealth rests on the aggregation of abstract numbers that cuts out all the relational goods and the ‘commons’ on which shared prosperity depends

Dunno if you've any plans for the future: medical student indirect questioning in simulated oncology interviews

<p>Abstract</p> <p>Background</p> <p>This exploratory study investigated the motives of medical students (N = 63) for using indirect questions of the type <it>I don't know if </it>[you have already heard about chemotherapies], <it>I don't know how </it>[you are], or <it>I don't know what </it>[you do for a living] in simulated patient interviews during a communication skills course.</p> <p>Methods</p> <p><it>I don't know </it>questions (IDK-Qs) were observed during the initial evaluation of students' communication skills; they were systematically identified through video screening and subjected to a qualitative content and discourse analysis considering their context, their content, their intent and their effect on the simulated patients. To evaluate the specificity of medical students' IDK-Qs, the data were compared with a data set of oncologists (N = 31) conducting simulated patient interviews in the context of a Communication Skills Training (CST).</p> <p>Results</p> <p>During the interviews, 41.3% of the students asked 1-6 IDK-Qs. The IDK-Qs were attributed to three content categories: medical/treatment questions (N = 24); lifestyle/psychosocial questions (N = 18); and "inviting questions" questions (N = 11). Most of the IDK-Qs had an exploratory function (46/53), with simulated patients providing detailed responses or asking for more information (36/53). IDK-Qs were rare in the oncologist sample compared to the student sample (5 vs. 53 occurrences).</p> <p>Conclusions</p> <p>IDK-Qs showed a question design difference between medical students and oncologists in simulated patient interviews. Among other reasons for this difference, the possible function of IDK-Qs as a protective linguistic strategy and marker for psychological discomfort is discussed.</p