Over-the-Counter Hearing Aids Challenge the Core Values of Traditional Audiology.

PURPOSE: Regulatory changes in the United States introduced over-the-counter (OTC) hearing aids with the goal of increasing the accessibility and affordability of hearing health care. It is critical to understand the values inherent to hearing health care systems to evaluate their effectiveness in serving people with hearing difficulty. In this study, we evaluated the relative importance of values across service delivery models and the extent to which the introduction of OTC hearing aids represents a values shift relative to traditional audiology. METHOD: We performed a qualitative content analysis of two document categories: critique documents that motivated the creation of OTC hearing aids and regulatory documents that defined OTC hearing aids. Team members coded portions of text for the values they expressed. In total, 29,235 words were coded across 72 pages in four documents. Rank-order analyses were performed to determine the prioritization of values within each category of documents and subsequently compare values between OTC and traditional audiology documents analyzed in a previous study. RESULTS: Critique and regulatory documents both prioritized values related to reducing barriers to hearing aid access and use, but the lack of a significant correlation in the rank order of values in these documents was evidence of inconsistency between the motivation and implementation of OTC hearing aids. Differences in the rank order of values in the OTC documents compared to traditional audiology were consistent with a values shift. CONCLUSIONS: The introduction of OTC as a solution to low hearing aid use represents a values shift, challenging the values of traditional audiology. This research demonstrates a need to establish the values of hearing health care service delivery through a consensus of stakeholders, including individuals from diverse backgrounds underserved by the traditional model.

Ethics governance development: The case of the Menlo Report.

The 2012 Menlo Report was an effort in which a group of computer scientists, US government funders, and lawyers produced ethics guidelines for research in information and communications technology (ICT). Here we study Menlo as a case of what we call ethics governance in the making, finding that this process examines past controversies and enrols existing networks to connect the everyday practice of ethics with ethics as a form of governance. To create the Menlo Report, authors and funders relied on bricolage work with existing, available resources, which significantly shaped both the report's contents and impacts. Report authors were motivated by both forward- and backward-looking goals: enabling new data-sharing as well as addressing past controversies and their implications for the field's body of research. Authors also grappled with uncertainty about which ethical frameworks were appropriate and made the decision to classify much network data as human subjects data. Finally, the Menlo Report authors attempted to enrol multiple existing networks in governance through appeals to local research communities as well as taking steps towards federal rulemaking. The Menlo Report serves as a case study in how to study ethics governance in the making: with attention to resources, adaptation, and bricolage, and with a focus on both the uncertainties the process tries to repair, as well as the new uncertainties the process uncovers, which will become the site of future ethics work.

Core Values in the Traditional Provision of Hearing Health Care.

PURPOSE: Untreated hearing loss is a significant public health issue affecting the quality of life of millions of Americans. Barriers to treatment invite novel and innovation solutions, but as these solutions create new treatment delivery models, they also may-purposefully or accidentally-challenge the values of the field. METHOD: Value-sensitive design methodology is used in this study to identify the values in current hearing health care service delivery. We performed qualitative content analysis of questionnaires, clinical practice guidelines, and professional ethics documents that represent the intended and enacted values in audiology. RESULTS: The result is a comprehensive list of values that can be used as a structured codebook for systematic textual analysis of materials representing current best practices in the provision of hearing health care services. A secondary result is an analysis of the relative importance of values in audiology, inferred from the frequency of references to each value. CONCLUSIONS: Subjective benefit, professional duties, and self-efficacy were the core values identified in the current provision of audiologic care, and these values should be central to considerations for new hearing health care models and technologies.

Role-Playing Computer Ethics: Designing and Evaluating the Privacy by Design (PbD) Simulation.

There is growing consensus that teaching computer ethics is important, but there is little consensus on how to do so. One unmet challenge is increasing the capacity of computing students to make decisions about the ethical challenges embedded in their technical work. This paper reports on the design, testing, and evaluation of an educational simulation to meet this challenge. The privacy by design simulation enables more relevant and effective computer ethics education by letting students experience and make decisions about common ethical challenges encountered in real-world work environments. This paper describes the process of incorporating empirical observations of ethical questions in computing into an online simulation and an in-person board game. We employed the Values at Play framework to transform empirical observations of design into a playable educational experience. First, we conducted qualitative research to discover when and how values levers-practices that encourage values discussions during technology development-occur during the design of new mobile applications. We then translated these findings into gameplay elements, including the goals, roles, and elements of surprise incorporated into a simulation. We ran the online simulation in five undergraduate computer and information science classes. Based on this experience, we created a more accessible board game, which we tested in two undergraduate classes and two professional workshops. We evaluated the effectiveness of both the online simulation and the board game using two methods: a pre/post-test of moral sensitivity based on the Defining Issues Test, and a questionnaire evaluating student experience. We found that converting real-world ethical challenges into a playable simulation increased student's reported interest in ethical issues in technology, and that students identified the role-playing activity as relevant to their technical coursework. This demonstrates that roleplaying can emphasize ethical decision-making as a relevant component of technical work.

Digital phenotyping, behavioral sensing, or personal sensing: names and transparency in the digital age.

Data from networked sensors, such as those in our phones, are increasingly being explored and used to identify behaviors related to health and mental health. While computer scientists have referred to this field as context sensing, personal sensing, or mobile sensing, medicine has more recently adopted the term digital phenotyping. This paper discusses the implications of these labels in light of privacy concerns, arguing language that is transparent and meaningful to the people whose data we are acquiring.

The Role of Data Type and Recipient in Individuals' Perspectives on Sharing Passively Collected Smartphone Data for Mental Health: Cross-Sectional Questionnaire Study.

BACKGROUND: The growing field of personal sensing harnesses sensor data collected from individuals' smartphones to understand their behaviors and experiences. Such data could be a powerful tool within mental health care. However, it is important to note that the nature of these data differs from the information usually available to, or discussed with, health care professionals. To design digital mental health tools that are acceptable to users, understanding how personal sensing data can be used and shared is critical. OBJECTIVE: This study aimed to investigate individuals' perspectives about sharing different types of sensor data beyond the research context, specifically with doctors, electronic health record (EHR) systems, and family members. METHODS: A questionnaire assessed participants' comfort with sharing six types of sensed data: physical activity, mood, sleep, communication logs, location, and social activity. Participants were asked about their comfort with sharing these data with three different recipients: doctors, EHR systems, and family members. A series of principal component analyses (one for each data recipient) was performed to identify clusters of sensor data types according to participants' comfort with sharing them. Relationships between recipients and sensor clusters were then explored using generalized estimating equation logistic regression models. RESULTS: A total of 211 participants completed the questionnaire. The majority were female (171/211, 81.0%), and the mean age was 38 years (SD 10.32). Principal component analyses consistently identified two clusters of sensed data across the three data recipients: "health information," including sleep, mood, and physical activity, and "personal data," including communication logs, location, and social activity. Overall, participants were significantly more comfortable sharing any type of sensed data with their doctor than with the EHR system or family members (P<.001) and more comfortable sharing "health information" than "personal data" (P<.001). Participant characteristics such as age or presence of depression or anxiety did not influence participants' comfort with sharing sensed data. CONCLUSIONS: The comfort level in sharing sensed data was dependent on both data type and recipient, but not individual characteristics. Given the identified differences in comfort with sensed data sharing, contextual factors of data type and recipient appear to be critically important as we design systems that harness sensor data for mental health treatment and support.

Ethics Regulation in Social Computing Research: Examining the Role of Institutional Review Boards.

The parallel rise of pervasive data collection platforms and computational methods for collecting, analyzing, and drawing inferences from large quantities of user data has advanced social computing research, investigating digital traces to understand mediated behaviors of individuals, groups, and societies. At the same time, methods employed to access these data have raised questions about ethical research practices. This article provides insights into U.S. institutional review boards' (IRBs) attitudes and practices regulating social computing research. Through descriptive and inferential analysis of survey data from staff at 59 IRBs at research universities, we examine how IRBs evaluate the growing variety of studies using pervasive digital data. Findings unpack the difficulties IRB staff face evaluating increasingly technical research proposals while highlighting the belief in their ability to surmount these difficulties. They also indicate a lack of consensus among IRB staff about what should be reviewed and a willingness to work closely with researchers.

Anticipatory ethics for a future Internet: analyzing values during the design of an Internet infrastructure.

The technical details of Internet architecture affect social debates about privacy and autonomy, intellectual property, cybersecurity, and the basic performance and reliability of Internet services. This paper explores one method for practicing anticipatory ethics in order to understand how a new infrastructure for the Internet might impact these social debates. This paper systematically examines values expressed by an Internet architecture engineering team-the Named Data Networking project-based on data gathered from publications and internal documents. Networking engineers making technical choices also weigh non-technical values when working on Internet infrastructure. Analysis of the team's documents reveals both values invoked in response to technical constraints and possibilities, such as efficiency and dynamism, as well as values, including privacy, security and anonymity, which stem from a concern for personal liberties. More peripheral communitarian values espoused by the engineers include democratization and trust. The paper considers the contextual and social origins of these values, and then uses them as a method of practicing anticipatory ethics: considering the impact such priorities may have on a future Internet.