Navigating the Research-Clinical Interface in Genomic Medicine: Analysis From the CSER Consortium

Purpose: The Clinical Sequencing Exploratory Research (CSER) Consortium encompasses nine National Institutes of Health– funded U-award projects investigating translation of genomic sequencing into clinical care. Previous literature has distinguished norms and rules governing research versus clinical care. This is the first study to explore how genomics investigators describe and navigate the research–clinical interface. Methods: A CSER working group developed a 22-item survey. All nine U-award projects participated. Descriptive data were tabulated and qualitative analysis of text responses identified themes and characterizations of the research–clinical interface. Results: Survey responses described how studies approached the research–clinical interface, including in consent practices, recording results, and using a research versus clinical laboratory. Responses revealed four characterizations of the interface: clear separation between research and clinical care, interdigitation of the two with steps to maintain separation, a dynamic interface, and merging of the two. All survey respondents utilized at least two different characterizations. Although research has traditionally been differentiated from clinical care, respondents pointed to factors blurring the distinction and strategies to differentiate the domains. Conclusion: These results illustrate the difficulty in applying the traditional bifurcation of research versus clinical care to translational models of clinical research, including in genomics. Our results suggest new directions for ethics and oversight

Digital interaction: where are we going?

In the framework of the AVI 2018 Conference, the interuniversity center ECONA has organized a thematic workshop on "Digital Interaction: where are we going?". Six contributions from the ECONA members investigate different perspectives around this thematic

Chloride-binding in organic–water mixtures: the powerful synergy of C–H donor groups within a bowl-shaped cavity

2,3,4,5-Tetrafluorobenzyl and imidazolium groups within an open-chain receptor allow for the effective binding of chloride in organic–water solution

A Chatbot Solution for eGLU-Box Pro: The Usability Evaluation Platform for Italian Public Administrations

This paper shows a chatbot solution for eGLU-box Pro, a usability testing platform for Italian Public Administration (PA). eGLU-box Pro is a web-based tool designed to help PA practitioners in creating remote usability tests and analyzing participants’ answers and interaction data after they complete the usability tasks. The impact of the chatbot solution on users’ experience was assessed by bio-behavioral evaluation methods such as eye tracking, electroencephalography, and facial expression recognition. This work describes the platform and its integrated chatbot solution and shows the results of a preliminary laboratory study involving 20 end-users. The study is part of an ongoing design and development project based on a user-centered approach

Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/116009/1/jlme12290.pd

eGLU-Box Mobile:A Smartphone App for Usability Testing by Italian Public Administration Webmasters

Smartphones and tablets now offer consumers unique advantages such as portability and accessibility. Developers are also working with a mobile-first approach, and are prioritizing mobile applications over desktop versions. This study introduces eGLU-box Mobile, an application for performing a drive usability test directly from a smartphone. An experimental study was conducted in which the participants were divided into two groups: an experimental group, which used the new mobile application from a smartphone, and a control group, which used the desktop application from a computer. The participants’ behavior was assessed using explicit (self-report questionnaires) and implicit measures (eye movement data). The results were encouraging, and showed that both the mobile and desktop versions of eGLU-box enabled participants to test the usability with a similar level of UX, despite some minimal (although significant) differences in terms of satisfaction of use

Is “incidental finding” the best term?: a study of patients’ preferences

There is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication, but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we sought the opinion of clinical genetics patients

Enhanced Electrocatalytic Oxygen Evolution in Au–Fe Nanoalloys

Oxygen evolution reaction (OER) is the most critical step in water splitting, still limiting the development of efficient alkaline water electrolyzers. Here we investigate the OER activity of Au–Fe nanoalloys obtained by laser-ablation synthesis in solution. This method allows a high amount of iron (up to 11 at %) to be incorporated into the gold lattice, which is not possible in Au–Fe alloys synthesized by other routes, due to thermodynamic constraints. The Au0.89Fe0.11 nanoalloys exhibit strongly enhanced OER in comparison to the individual pure metal nanoparticles, lowering the onset of OER and increasing up to 20 times the current density in alkaline aqueous solutions. Such a remarkable electrocatalytic activity is associated to nanoalloying, as demonstrated by comparative examples with physical mixtures of gold and iron nanoparticles. These results open attractive scenarios to the use of kinetically stable nanoalloys for catalysis and energy conversion