A Code of Digital Ethics: laying the foundation for digital ethics in a science and technology company

The rapid and dynamic nature of digital transformation challenges companies that wish to develop and deploy novel digital technologies. Like other actors faced with this transformation, companies need to find robust ways to ethically guide their innovations and business decisions. Digital ethics has recently featured in a plethora of both practical corporate guidelines and compilations of high-level principles, but there remains a gap concerning the development of sound ethical guidance in specific business contexts. As a multinational science and technology company faced with a broad range of digital ventures and associated ethical challenges, Merck KGaA has laid the foundations for bridging this gap by developing a Code of Digital Ethics (CoDE) tailored for this context. Following a comprehensive analysis of existing digital ethics guidelines, we used a reconstructive social research approach to identify 20 relevant principles and derive a code designed as a multi-purpose tool. Versatility was prioritised by defining non-prescriptive guidelines that are open to different perspectives and thus well-suited for operationalisation for varied business purposes. We also chose a clear nested structure that highlights the relationships between five core and fifteen subsidiary principles as well as the different levels of reference—data and algorithmic systems—to which they apply. The CoDE will serve Merck KGaA and its new Digital Ethics Advisory Panel to guide ethical reflection, evaluation and decision-making across the full spectrum of digital developments encountered and undertaken by the company whilst also offering an opportunity to increase transparency for external partners, and thus trust.

Human-Centered Design of an Advance Care Planning Group Visit for Mild Cognitive Impairment

Background and Objectives While advance care planning (ACP) is critical for ensuring optimal end-of-life outcomes among individuals with mild cognitive impairment (MCI), many individuals that may benefit from ACP have not initiated this process. This paper aims to describe the iterative design of a MCI group visit-based intervention, and evaluate feasibility and acceptability of the intervention. Research Design and Methods We used human-centered design, rapid-cycle prototyping, and multiple methods to adapt an Engaging in Advance Care planning Talks (ENACT) Group Visits intervention. We convened an advisory panel of persons with MCI and care partners (n=6 dyads) to refine the intervention and conducted a single-arm pilot of four MCI ENACT intervention prototypes (n=13 dyads). We used surveys and interviews to assess outcomes from multiple perspectives. Results The advisory panel affirmed that ACP is a priority for individuals with MCI, described the need for ACP in a group setting, and suggested refinements to ACP resources for the MCI ENACT intervention. Feasibility of recruitment was limited. MCI ENACT intervention participants strongly agreed that group discussions provided useful information and recommended the intervention. Themes supporting acceptability included: 1) feedback on acceptability of the intervention; 2) previous experiences with ACP; and 3) reasons for participation, including desire for discussions about MCI and how it relates to ACP. Discussion and Implications Despite stakeholder’s positive ratings of acceptability of the MCI ENACT intervention, future work is needed to enhance feasibility of recruitment to support implementation into clinical settings.

Rights of Families of Disappeared Persons

This book examines how international judicial and non-judicial bodies in Europe address the needs of the families of forcibly disappeared persons. The needs in question are returning the remains of disappeared persons; the right to truth; the acceptance of responsibility by states; and the right to compensation. These have been identified as the four most commonly shared basic and fundamental needs of families in which an adult was disappeared many years previously and is now assumed to be dead, which is representative of the situation of the vast majority of families of disappeared persons in Europe. <br><br>The analysis covers the judgments and decisions of the European Court of Human Rights, the UN Human Rights Committee, the International Criminal Tribunal for the former Yugoslavia, the Human Rights Chamber for Bosnia and Herzegovina, and the Human Rights Advisory Panel in Kosovo, as well as the activities of the Committee on Missing Persons in Cyprus, the Special Process on Missing Persons in the Territory of former Yugoslavia, the UN Committee on Enforced Disappearances and the International Commission on Missing Persons. In so doing, the book demonstrates whether, how, and based on what principles these four needs of the families of disappeared persons can constitute a claim based on international human rights law.

Collaboration and co-production with Black, Asian and minority ethnic students: working in partnership with our students to inform and deliver access and participation practice

In recent years, the topic of UK-domiciled undergraduate students from Black, Asian and minority ethnic (BAME) backgrounds not accessing, succeeding and progressing as well as their White peers in Higher Education (HE) has gained increased policy and media attention. Institutions are required to address gaps amongst student groups that are underrepresented within HE, including students from BAME backgrounds, through their Office for Students' (OfS) regulated Access and Participation Plan (APP). This paper offers specific examples of how Edge Hill University, a university in North West England, has begun to approach this work in the new regulatory environment. APPs now place an increased emphasis upon research informed practice, student engagement, consultation, and evaluation. This innovative practice article provides a detailed example of genuine collaboration and coproduction with students to develop and deliver APP work, and extends an earlier presentation delivered at the March 2021 Open University Access Participation and Success International Biennial Conference. In this article, the authors outline the development of a new Diversity Access Programme and a BAME Student Advisory Panel. The paper offers a reflective account of how APP leads, Widening Participation (WP) practitioners, evaluators and students can work together effectively in partnership to design and deliver WP initiatives.

Religion and the Organization for Security and Co-operation in Europe

The Organization for Security and Cooperation in Europe (OSCE) and its Office of Democratic Institutions and Human Rights (ODIHR) have played an important role in reinforcing, distilling, and implementing the fundamental right to freedom of religion or belief (FoRB) in the OSCE region. The CSCE (later OSCE) has engaged in major norm-setting initiatives regarding FoRB. The ODIHR’s Advisory Panel/Council on Freedom of Religion or Belief emerged in 1997, and in ensuing years, produced legislative reviews, ‘Guidelines for Review of Legislation’ (2004); and the Toledo Guiding Principles on Teaching about Religions or Beliefs in Public Schools (2007). The FoRB Programme at ODIHR followed through with ‘Guidelines on the Legal Personality’ (2014) and ‘Freedom of Religion or Belief and Security’ (2019). These documents are at the core of more extensive institutional promotion of FoRB.

Promoting inclusion in clinical trials—a rapid review of the literature and recommendations for action

Background Without inclusion of diverse research participants, it is challenging to understand how study findings will translate into the real world. Despite this, a lack of inclusion of those from under-served groups in research is a prevailing problem due to multi-faceted barriers acting at multiple levels. Therefore, we rapidly reviewed international published literature, in relation to clinical trials, on barriers relating to inclusion, and evidence of approaches that are effective in overcoming these. Methods A rapid literature review was conducted searching PubMed for peer-reviewed articles that discussed barriers to inclusion or strategies to improve inclusion in clinical trial research published between 2010 and 2021. Grey literature articles were excluded. Results Seventy-two eligible articles were included. The main barriers identified were language and communication, lack of trust, access to trials, eligibility criteria, attitudes and beliefs, lack of knowledge around clinical trials, and logistical and practical issues. In relation to evidence-based strategies and enablers, two key themes arose: [1] a multi-faceted approach is essential [2]; no single strategy was universally effective either within or between trials. The key evidence-based strategies identified were cultural competency training, community partnerships, personalised approach, multilingual materials and staff, communication-specific strategies, increasing understanding and trust, and tackling logistical barriers. Conclusions Many of the barriers relating to inclusion are the same as those that impact trial design and healthcare delivery generally. However, the presentation of these barriers among different under-served groups may be unique to each population’s particular circumstances, background, and needs. Based on the literature, we make 15 recommendations that, if implemented, may help improve inclusion within clinical trials and clinical research more generally. The three main recommendations include improving cultural competency and sensitivity of all clinical trial staff through training and ongoing personal development, the need to establish a diverse community advisory panel for ongoing input into the research process, and increasing recruitment of staff from under-served groups. Implementation of these recommendations may help improve representation of under-served groups in clinical trials which would improve the external validity of associated findings.

Engaging Stakeholders in a Pragmatic Trial of Home-Delivered Meals for Persons with Dementia

Gathering stakeholder feedback is essential to designing and implementing relevant and actionable research. Additionally, stakeholders, particularly those directly impacted by an intervention, bring unique insights and experiences. This paper presents the process and findings of a research endeavor to co-design a pragmatic clinical trial with a Stakeholder Advisory Panel (SAP) in an effort to understand facilitators and barriers to conducting the research and implementing study findings. The proposed trial compares the impact of frozen, drop-shipped meals versus daily home-delivered meals provided by Meals on Wheels (MOW) programs on the ability of individuals living with dementia to age in place. We recruited nine SAP members, who were compensated for their time. The SAP is composed of a) MOW clients with dementia, b) family members of MOW clients with dementia, c) paid or volunteer MOW drivers, and d) MOW staff. A research team member facilitated two 90-minute meetings with the SAP members via Zoom. The topics of the meetings included potential benefits and challenges with each mode of meal delivery, the importance of the primary outcome (time to nursing home placement), topics of interest to include in interviews with clients and caregivers, and how participants would explain the study to a friend. Audio of the Zoom meetings was transcribed, and meeting summaries were shared with the SAP. Benefits of forming and engaging a SAP, as well as key lessons learned from SAP members and how recommendations were reflected in changes to the study protocol will be discussed.

Diversity, Equity, and Inclusion in Gerontological Research Mentoring and Methodologies

With a rapid increase in our nation's diversity and in particular the diversity of the aging population, research focused on the well-being and quality of life for all older adults is imperative. Within GSA, The Minority Issue in Gerontology Advisory Panel is charged with providing support to the membership that ultimately will yield an increase in the quantity and quality of research related to minority aging issues. Therefore, understanding best practices for minority-focused gerontological research and gerontological education curriculum is warranted. The advancement of the field is predicated on the ability to have trained professionals with skills and competencies that effectively meet the needs of a diverse aging population. This symposium will include a presentation highlighting practical strategies for strengthening gerontology research by intentionally incorporating anti-racist methodological approaches. The second presentation will consist of recommendations on how to support, promote, and advance gerontology education in a manner that increases the diversity of those pursuing a research or an applied career in this area of study. Presenters will share an overview of the literature, findings from program implementation focus groups, and recommendations for tailoring strategies to fit your intended audience. This session will prove beneficial as we make strides to ensure that diversity, equity, and inclusion remain a core value and an inherent practice of all gerontology professionals.

Integrating Humanities and Arts Into Gerontology and Geriatrics Curricula

Humanities, Arts and Cultural Gerontology (HACG) has been an integral element of GSA for over 4 decades, and is included as a notable feature of AGHE guidelines on curricula for gerontology and geriatrics. However, as with many interdisciplinary areas, the degree to which HACG has been successfully inserted into curricula, the extent to which this has involved engagement of faculty in arts and humanities, and the facilitators and barriers of such deeper joint working are unknown. The HACG Advisory Panel and AGHE would like to convene a round-table/symposium at the 2021 Phoenix GSA Meeting to consider the range of experiences of educators of programs in gerontology/geriatrics, from those who can relate success stories in integrating HACG into their curricula, to those who can give insights into challenges and opportunities in attempts to develop such elements in their curricula. Co-convened by Des O'Neill, Chair HACG AP and Dana Burr Bradley AGHE Program Chair, we invite lively discussion which we consider will aid in the development of a road map towards substantive and rewarding initiatives in incorporating scholarship and education in HACG in gerontology and geriatrics educational program