Mind the Relationship: A Multi-Layered Ethical Framework for Citizen Science in Health

There is a heated debate about what citizen science is and is not. We argue that instead of aiming at a definition of citizen science, we should reflect upon its ethical starting points. Based on our practical experiences with citizen science initiatives, we come up with an ethical framework that consists of two core values (respect and justice), five ethical desiderata (relationship between equals; recognition of each other's capacities, knowledge, and agency; reciprocity; openness for different goals; and openness for different research methods and paradigms) and two fundamental qualities (symmetry and transparency). The desiderata reflect ethically problematic practices, such as the use of citizens by academic scientists as mere sensors, and biases in the existing literature, such as labelling the projects that are initiated and led by citizens as “extreme”. The desiderata are supported by two ethical theories: care ethics and the capabilities approach. The aim of our ethical framework is to stimulate and facilitate reflection upon what needs to be considered when co-creating or assessing a citizen science initiative. Fundamentally, citizen science ought to be a humanizing endeavour unlocking the investigative capacities of humans. The ethical framework is meant to help reflect on this endeavour.</p

Dynamics of triacylglycerol and EPA production in Phaeodactylum tricornutum under nitrogen starvation at different light intensities

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What is the effect of MRI with targeted biopsies on the rate of patients discontinuing active surveillance? A reflection of the use of MRI in the PRIAS study

Background The reduction of overtreatment by active surveillance (AS) is limited in patients with low-risk prostate cancer (PCa) due to high rates of patients switching to radical treatment. MRI improves biopsy accuracy and could therewith affect inclusion in or continuation of AS. We aim to assess the effect of MRI with target biopsies on the total rate of patients discontinuing AS, and in particular discontinuation due to Grade Group (GG) reclassification. Methods Three subpopulations included in the prospective PRIAS study with GG 1 were studied. Group A consists of patients diagnosed before 2009 without MRI before or during AS. Group B consists of patients diagnosed without MRI, but all patients underwent MRI within 6 months after diagnosis. Group C consists of patients who underwent MRI before diagnosis and during follow-up. We used cumulative incidence curves to estimate the rates of discontinuation. Results In Group A (n = 500), the cumulative probability of discontinuing AS at 2 years is 27.5%; GG reclassification solely accounted for 6.9% of the discontinuation. In Group B (n = 351) these numbers are 30.9 and 22.8%, and for Group C (n = 435) 24.2 and 13.4%. The three groups were not randomized, however, baseline characteristics are highly comparable. Conclusions Performing an MRI before starting AS reduces the cumulative probability of discontinuing AS at 2 years. Performing an MRI after already being on AS increases the cumulative probability of discontinuing AS in comparison to not performing an MRI, especially because of an increase in GG reclassification. These results suggest that the use of MRI could lead to more patients being considered unsuitable for AS. Considering the excellent long-term cancer-specific survival of AS before the MRI era, the increased diagnostic accuracy of MRI could potentially lead to more overtreatment if definitions and treatment options of significant PCa are not adapted.Peer reviewe

Continuous versus batch production of lipids in the microalgae Acutodesmus obliquus

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Perceptual snoring as a basis for a psychoacoustical modeling and clinical patient profiling

Purpose The perceptual burden and social nuisance for mainly the co-sleeper can affect the relationship between snorer and bedpartner. Mandibular advancement devices (MAD) are commonly recommended to treat sleep-related breathing such as snoring or sleep apnea. There is no consensus about the definition of snoring particularly with MAD, which is essential for assessing the effectiveness of treatment. We aimed to stablish a notion of perceptual snoring with MAD in place. Methods Sound samples, each 30 min long, were recorded during in-home, overnight, automatic mandibular repositioning titration studies in a population of 29 patients with obstructive sleep apnea syndrome (OSAS) from a clinical trial carried out to validate the MATRx plus. Three unspecialized and calibrated raters identified sound events and classified them as noise, snore, or breathing as well as providing scores for classification certainty and annoyance. Data were analyzed with respect to expiration-inspiration, duration, annoyance, and classification certainty. Results A Fleiss' kappa (>0.80) and correlation duration of events (>0.90) between raters were observed. Prevalence of all breath sounds: snore 55.6% (N = 6398), breathing sounds 31.7% (N = 3652), and noise 9.3% (N = 1072). Inspiration occurs in 88.3% of events, 96.8% contained at least on expiration phase. Snore and breath events had similar duration, respectively 2.58s (sd 1.43) and 2.41s (sd 1.22). Annoyance is lowest for breathing events (8.00 sd 0.98) and highest for snore events (4.90 sd 1.92) on a VAS from zero to ten. Conclusion Perceptual sound events can be a basis for analysis in a psychosocial context. Perceived snoring occurs during both expiration as well as inspiration. Substantial amount of snoring remains despite repositioning of the mandible aimed at the reduction of AHI-ODI

The role of starch as transient energy buffer in synchronized microalgal growth in Acutodesmus obliquus

publishedVersionPaid Open Acces