Socializing One Health: an innovative strategy to investigate social and behavioral risks of emerging viral threats

In an effort to strengthen global capacity to prevent, detect, and control infectious diseases in animals and people, the United States Agency for International Development’s (USAID) Emerging Pandemic Threats (EPT) PREDICT project funded development of regional, national, and local One Health capacities for early disease detection, rapid response, disease control, and risk reduction. From the outset, the EPT approach was inclusive of social science research methods designed to understand the contexts and behaviors of communities living and working at human-animal-environment interfaces considered high-risk for virus emergence. Using qualitative and quantitative approaches, PREDICT behavioral research aimed to identify and assess a range of socio-cultural behaviors that could be influential in zoonotic disease emergence, amplification, and transmission. This broad approach to behavioral risk characterization enabled us to identify and characterize human activities that could be linked to the transmission dynamics of new and emerging viruses. This paper provides a discussion of implementation of a social science approach within a zoonotic surveillance framework. We conducted in-depth ethnographic interviews and focus groups to better understand the individual- and community-level knowledge, attitudes, and practices that potentially put participants at risk for zoonotic disease transmission from the animals they live and work with, across 6 interface domains. When we asked highly-exposed individuals (ie. bushmeat hunters, wildlife or guano farmers) about the risk they perceived in their occupational activities, most did not perceive it to be risky, whether because it was normalized by years (or generations) of doing such an activity, or due to lack of information about potential risks. Integrating the social sciences allows investigations of the specific human activities that are hypothesized to drive disease emergence, amplification, and transmission, in order to better substantiate behavioral disease drivers, along with the social dimensions of infection and transmission dynamics. Understanding these dynamics is critical to achieving health security--the protection from threats to health-- which requires investments in both collective and individual health security. Involving behavioral sciences into zoonotic disease surveillance allowed us to push toward fuller community integration and engagement and toward dialogue and implementation of recommendations for disease prevention and improved health security

Anticipatory Governance, Anticipatory Advocacy, Knowledge Brokering, and the State of Disabled People's Rights Advocacy in Canada: Perspectives of Two Canadian Cross-Disability Rights Organizations

Advancements in science, technology and innovation (STI), both conceptualized and emerging, are continuing to impact society as a whole, and disabled people in particular, in numerous ways. How STI advancements should be governed to address the impacts has been discussed for some time and several STI governance frameworks have emerged to tackle this challenge. While each framework may vary by strategy and approach, anticipatory practice (or foresight) and public engagement are two approaches utilized across these different strategies. The purpose of this study was to examine the utility and consequences of anticipatory governance practice (which entails anticipatory practice and public engagement) as an indicator of success for STI governance for disabled people. Using a multiple-case study research design, and the frameworks of Ability Studies and Sherry Arnstein’s Ladder of Citizen Participation, my thesis focuses on the views of advocates for disabled people’s rights from two national cross-disability rights organizations in Canada on the practical reality of advocacy in Canada and the capacity of disabled people to engage in and influence discourse on STI governance, especially in an anticipatory way, and what they see as approaches to increase disabled people’s influence on STI governance. I also explore the role of the knowledge broker as a facilitator for collaboration and information exchange to support cross-disability rights organizations in the practice of anticipatory advocacy. The study’s main conclusion is that the application of anticipatory practices to governance frameworks generates the need for anticipatory advocacy - the capacity and ability to advocate in an anticipatory way to be part of anticipatory governance discourses. However, anticipatory governance is, as a practical reality, a privileged discourse that is limited to those who fulfill certain abilities to participate in this practice. For disabled people and cross-disability rights organizations, anticipatory practices pose many barriers and challenges and much work remains to be done for and by disabled people in order to ensure their meaningful engagement in anticipatory governance practices for STI

Who Needs to Fit in? Who Gets to Stand out? Communication Technologies Including Brain-Machine Interfaces Revealed from the Perspectives of Special Education School Teachers Through an Ableism Lens

Some new and envisioned technologies such as brain machine interfaces (BMI) that are being developed initially for people with disabilities, but whose use can also be expanded to the general public have the potential to change body ability expectations of disabled and non-disabled people beyond the species-typical. The ways in which this dynamic will impact students with disabilities in the domain of special education is explored. Data was drawn from six special education school teachers from one school in Calgary, Alberta. Five sub-themes (social acceptance, not adding to the impairment, fear of judgement by society, pursuing “normality” and meeting the demands of society) were identified that fit under the main identified theme of “fitting in by not standing out”. Findings demonstrate a dichotomy in participant views of non- or socially acceptable communication devices. The perception of BMI technology was also explored among special education school teachers, revealing benefits and challenges with the uptake of this technology for students with disabilities. Perceptions of people with disabilities and ableism are presented as conceptual frameworks to interpret the influence and impact of the findings

The Discussions around Precision Genetic Engineering: Role of and Impact on Disabled People

Genetic researchers are advancing in their abilities to extract precise genetic information from biological and human entities bringing genetic research steps closer to accurately modifying genes of biological entities, including that of humans. In this analytical essay, we focus on the discussions about precision genetic intervention that have taken place since March 2015 as they pertain to disabled people. We focus on two areas; one being the role of disabled people in the recent gene editing discussions and the second being the utility of existing legal instruments. Within our first focus we address the following questions: (a) What is the visibility of disabled people in the gene-editing discussions that have taken place since March 2015? (b) What has been the impact of those discussions on disabled people? (c) Were social problems which disabled people face taken into account in those discussions; (d) How does the reality of engagement with disabled people in these discussions fit with science, technology and innovation governance discourses that ask for more stakeholder, bottom up and anticipatory involvement? Within our second focus we address the following questions: (a) What is the utility of the United Nations Convention on the Right of Persons with Disabilities (UNCRPD); and (b) What is the utility of existing legal instruments covering genetic interventions: for preventing negative social consequences of genetic engineering developments for disabled people. We argue that (a) the genetic engineering debates since March 2015 have portrayed disabled people dominantly through a medical lens; (b) that the governance of science, technology and innovation of genetic engineering including anticipatory governance and responsible innovation discourses has not yet engaged with the social impact of gene editing on disabled people; (c) that few scholars that focus on the social situation of disabled people are visible in the governance discussions of gene editing; and (d) that the utility of the UNCRPD and the investigated genetic-related legal instruments and international agreements to protect disabled people from negative consequences coming out of the gene editing discussions is unclear at the least

Perceptions of Brain-Machine Interface Technology among Mothers of Disabled Children

Communication technologies are constantly transforming the way we communicate and interact with each other, and with our environment, with its impact affecting everyone including disabled people and the groups linked to them. The brain-machine interface (BMI) is one example of an emerging communication technology envisioned to transform the way we communicate and interact with each other and our environment in the near future. One group targeted to use BMI technology and impacted by others using BMI are disabled people. For disabled people and their families, the impact and implications of adopting BMI technologies is important to understand so they can make informed decisions and advocate for policies governing the technology's application to decrease negative and increase positive outcomes. In this study, we interviewed nine mothers of disabled children, with no prior knowledge of BMI technology, to explore their perceptions and attitude toward the technology. Five main themes emerged from our findings: the potential benefit to aid mothers to interpret their children's needs; the potential benefit to expand a child's social network; the preference for non-invasive BMI approach; impact of BMI use by non-disabled people and cost and qualification barriers

Social Robots, Brain Machine Interfaces and Neuro/Cognitive Enhancers: Three Emerging Science and Technology Products through the Lens of Technology Acceptance Theories, Models and Frameworks

technologie

Emerging Therapeutic Enhancement Enabling Health Technologies and Their Discourses: What Is Discussed within the Health Domain?

healthcar

Study of Mothers’ and Infants’ Life Events Affecting Oral Health (SMILE) birth cohort study: Cohort profile

Purpose: The long-term goal of the Study of Mothers’ and Infants’ Life Events Affecting Oral Health (SMILE) birth cohort study is to identify and evaluate the relative importance and timing of critical factors that shape the oral health of young children. It will then evaluate those factors in their inter-relationship with socioeconomic influences. Participants: SMILE is a single-centre study conducted in Adelaide, Australia. All newborns at the main three public hospitals between July 2013 and August 2014 were eligible for inclusion. The final recruited sample at birth was 2181 mother/infant dyads. Participants were followed up with questionnaires when the child was 3 and 6 months of age, and 1, 2 and 5 years of age. Oral epidemiological examinations and anthropometric assessments were conducted at age 2 and 5 years. Findings to date: SMILE has contributed comprehensive data on dietary patterns of young children. Intakes of free sugars, core and discretionary foods and drinks have been detailed. There was a sharp increase in free sugars intake with age. Determinants of dietary patterns, oral health status and body weight during the first 5 years of life have been evaluated. Socioeconomic characteristics such as maternal education and household income and area-level socioeconomic profile influenced dietary patterns and oral health behaviours and status. Future plan: Funding has been obtained to conduct oral epidemiological examinations and anthropometric assessments at age 7–8 years. Plans are being developed to follow the cohort into adolescent years