Ethics review of big data research: What should stay and what should be reformed?

BACKGROUND: Ethics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. MAIN TEXT: In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC's scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC's way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science. CONCLUSIONS: We believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large.

Liver Transplantation in Patients with Sickle Cell Disease in the United States.

BACKGROUND: Up to 30% of patients with sickle cell disease (SCD) develop chronic liver disease via etiologies including sickle cell hepatopathy, acquired viral hepatitis, or secondary hemochromatosis. It is unclear how many patients with SCD ultimately undergo liver transplantation (LT) and what factors are associated with survival after LT. In this study, we examined LT outcomes in these patients by reviewing the Scientific Registry of Transplant Recipients (SRTR) and our institutional experience. METHODS: Analysis of the SRTR identified 23 LT recipients and five simultaneous liver and kidney transplantation (SLKT) recipients with SCD. Patient demographics and graft and patient survival were analyzed. Two patients with SCD at our institution underwent SLKT. RESULTS: Review of the SRTR revealed that recipients with SCD had significantly higher model for end-stage liver disease scores (33 versus 21, P = 0.004), preoperative intensive care unit admission (43.5% versus 19.1%, P = 0.007), preoperative dialysis (17.4% versus 4.9%, P = 0.009), and were more likely to be status 1 (26.1% versus 12.1%, P = 0.041) when compared with the reference population of African American LT recipients. Despite being higher risk at the time of LT, patients with SCD had equivalent posttransplant graft and patient survival when compared with the reference population (P = 0.5 and P = 0.2, respectively) and a 2:1 propensity score-matched group (P = 0.5 and P = 0.2, respectively). Two recent SLKT recipients with SCD from our institution have performed well with stable allograft function. CONCLUSIONS: Data from the SRTR demonstrate that patients with SCD can expect equivalent graft and patient survival after LT despite exhibiting more comorbidities at the time of LT. The low number of patients with SCD who underwent LT in the SRTR in comparison with the rate of chronic liver disease in this population raises the question as to whether a disparity in access to LT exists for this complex population.

Text message intervention improves objective sleep hours among adolescents: the moderating role of race-ethnicity.

OBJECTIVES: This 10-day study aimed to (1) assess the effectiveness of a text message-based sleep intervention and (2) determine whether the intervention was equally effective for non-Hispanic whites and racial-ethnic minority adolescents. PARTICIPANTS: Participants were 46 (50% female) adolescents (13-18 years; mean=15.75 years old, SD=0.98) from a public high school in the Midwest. INTERVENTION: Participants were randomly assigned to a control or text message intervention condition. Only participants in the intervention condition received 2 text messages outlining individualized bedtime goals daily, for 8 weekdays. MEASUREMENTS: All participants attended a sleep lecture, wore a sleep monitor, and completed baseline and exit surveys that assessed demographics, subjective sleep, lifestyle, and psychosocial adjustment variables. RESULTS: Results of a 2 (intervention, control) × 2 (pre-intervention, postintervention) analysis of variance test revealed no significant intervention × time interaction effect (F1,38=0.020, P=.889) in the full sample. This effect, however, was significantly moderated by race-ethnicity: Results indicated a significant intervention × time × race interaction (F1,36=8.050, P=.007, partial η2=.183) such that the intervention significantly improved sleep hours (by approximately 1 hour) only among non-Hispanic whites (and not among adolescents of racial-ethnic minority status). CONCLUSIONS: Adolescents from racial-ethnic minority groups may face significant barriers that interfere with their ability to successfully alter their sleep-wake patterns and maximize sleep hours.

The Effects of Fluidic Loading on Underwater Contact Sensing with Robotic Fins and Beams.

As robots become more involved in underwater operations, understanding underwater contact sensing with compliant systems is fundamental to engineering useful haptic interfaces and vehicles. Despite knowledge of contact sensation in air, little is known about contact sensing underwater and the impact of fluid on both the robotic probe and the target object. The objective of this work is to understand the effects of fluidic loading, fin webbing, and target object geometry on strain sensation within compliant robotic fins and beams during obstacle contact. General descriptions of obstacle contact were sought for strain measurements in fins and beams. Multiple phases of contact were characterized where the robot, fluid, and object interact to affect sensory signals. Unlike in air, the underwater structure-fluid-structure interaction (SFSI) caused changes to strain in each phase of contact. The addition of webbing to beams created a mechanical coupling between adjacent beams, which changed contact strains. Complex obstacle geometries tended to make contact less apparent and caused stretch in fins. This work demonstrates several effects of fluidic loading on strain sensing with compliant robotic beams and fins as they contact obstacles in air and underwater, and provides guidance for future work in underwater active sensing with compliant manipulators.

Predicting propulsive forces using distributed sensors in a compliant, high DOF, robotic fin.

Engineered robotic fins have adapted principles of propulsion from bony-finned fish, using spatially-varying compliance and complex kinematics to produce and control the fin's propulsive force through time. While methods of force production are well understood, few models exist to predict the propulsive forces of a compliant, high degree of freedom, robotic fin as it moves through fluid. Inspired by evidence that the bluegill sunfish (Lepomis macrochirus) has bending sensation in its pectoral fins, the objective of this study is to understand how sensors distributed within a compliant robotic fin can be used to estimate and predict the fin's propulsive force. A biorobotic model of a bluegill sunfish pectoral fin was instrumented with pressure and bending sensors at multiple locations. Experiments with the robotic fin were executed that varied the swimming gait, flapping frequency, stroke phase, and fin stiffness to understand the forces and sensory measures that occur during swimming. A convolution-based, multi-input-single-output (MISO) model was selected to model and study the relationships between sensory data and propulsive force. Subsets of sensory data were studied to determine which sensor modalities and sensor placement locations resulted in the best force predictions. The propulsive forces of the fin were accurately predicted using the linear MISO model on intrinsic sensory data. Bending sensation was more effective than pressure sensation for predicting propulsive forces, and the importance of bending sensation was consistent with several results in biology and engineering studies. It was important to have a spatial distribution of sensors and multiple sensory modalities in order to predict forces across large changes to dynamics. The relationship between propulsive forces and intrinsic sensory measures is complex, and good models should allow for temporal lags between forces and sensory data, changes to the model within a fin stroke, and changes to the model through gait transitions.