scholarly journals Bioethics and Universal Vulnerability: Exploring the Ethics and Practices of Research Participation

2019 ◽  
Vol 28 (2) ◽  
pp. 293-316 ◽  
Author(s):  
Nola M Ries ◽  
Michael Thomson
Keyword(s):  
Social Justice ◽  
Social Inclusion ◽  
Research Participation ◽  
Institutional Support ◽  
Human Condition ◽  
Inclusive Design ◽  
Care And Support ◽  
Or Groups ◽  
Scientific Value ◽  
Participation In Research

Abstract In this article, we advocate the adoption of universal vulnerability as a core value in bioethics. We argue that understanding vulnerability as the universal human condition—and rejecting the labelling of particular individuals or groups as vulnerable—would benefit bioethics and the research it governs. Bioethics first engaged with vulnerability in the context of participation in research and this continues to define how the value is typically understood. Thus, vulnerability is generally deployed to describe individuals (or populations), where real or perceived deficiencies limit the ability to function and to protect themselves from risks. Revisiting this initial context and the participation in research of people living with dementia, we note that the bioethical position of excluding the ‘vulnerable’ from research has led to major gaps in evidence and knowledge to inform care and support. Turning to universal vulnerability, we consider the research design and practices that the approach would mandate. We emphasise the importance of inclusive design and mechanisms of institutional support that enable participation. We argue that these positively impact on the scientific value of research and address social justice concerns around social inclusion. Our aim is to provoke a fundamental reassessment of how vulnerability is conceived of in bioethics.

scholarly journals Revealed Traits: A Novel Method for Estimating Cross-Cultural Similarities and Differences in Personality

2018 ◽  
Vol 49 (4) ◽  
pp. 554-586 ◽  
Author(s):  
Cory K. Costello ◽  
Dustin Wood ◽  
William Tov
Keyword(s):  
Social Inclusion ◽  
Cross Cultural ◽  
Self Report ◽  
Revealed Preferences ◽  
Cultural Groups ◽  
Cross Cultural Differences ◽  
Country Level ◽  
Cultural Research ◽  
Or Groups ◽  
Novel Method

Cross-cultural research on personality has often led to surprising and countertheoretical findings, which have led to concerns over the validity of country-level estimates of personality (e.g., Heine, Buchtel, & Norenzayan, 2008). The present study explores how cross-cultural differences can be indexed via revealed trait estimates, which index the personality traits of individuals or groups indirectly through their likelihood of responding in particular ways to particular situations. In two studies, we measure self-reports of personality, revealed traits, and revealed preferences for different expected effects (e.g., experiencing excitement) of two cultural groups (U.S. and Singaporean participants). We found typical East–West differences in personality using self-report scales, such as lower levels of Conscientiousness- and Extraversion-related characteristics among Singaporean participants relative to U.S. participants. We found evidence of scale use extremity differences in self-report personality scales but not in revealed trait estimates. Using revealed traits, we found evidence of strikingly high levels of similarity in terms of overall action endorsement, revealed trait estimates, and revealed preferences. However, this was qualified by consistent differences in revealed trait estimates of Extraversion-related characteristics and less consistent differences in revealed trait estimates of Conscientiousness-related characteristics. We also found consistent differences in preferences for different expected effects; for example, Singaporean participants reported lower likelihood of performing actions expected to result in experiencing stimulation or excitement than U.S. participants. Results suggest that similarities in action endorsements and revealed traits may be driven by common preferences for social inclusion and benevolence, and differences may be driven by differing preferences for expending effort, experiencing stimulation, and social attention.

Geographers, ethics and social concern

2003 ◽  
Author(s):  
David M. Smith
Keyword(s):  
Social Justice ◽  
Radical Reaction ◽  
Social Geography ◽  
Human Geography ◽  
Human Condition ◽  
Social Concern ◽  
Apparent Lack ◽  
The 1960S ◽  
Life On Earth

Social concern, or relevance, was one of the main themes in human geography during the last three decades of the twentieth century. Preoccupation with the areal differentiation of life on earth, which had dominated the discipline until the 1960s, gave way to an emerging sense of responsibility for improving the human condition. An apparent lack of social concern on the part of the new numerical human geography helped to provoke the ‘radical’ reaction of the 1970s. Inequality and social justice became central issues, as the role of values in geography was explicitly recognised. The 1990s saw a broader ‘moral turn’, involving explorations of the interface between geography and ethics. British geography and geographers played a prominent part in the discipline's orientation towards ethics and social concern. The proliferation of issues of social concern prompted a rethinking of social geography.

An Assessment Relationship between Social Exclusion and Transportation

2017 ◽  
pp. 99-128
Author(s):  
Seher Ozkazanc ◽  
Nihan Ozdemir Sonmez
Keyword(s):  
Social Exclusion ◽  
Social Cohesion ◽  
Social Inclusion ◽  
Social Groups ◽  
Spatial Segregation ◽  
Urban Transport ◽  
Segregation Pattern ◽  
Large Cities ◽  
Or Groups ◽  
Spatial Terms

Having been used extensively since the 1980s, the concept of social exclusion has given a new impetus to the discussions of poverty and disadvantageousness. The concept of social exclusion, which can be defined as the condition in which certain individuals or social groups cannot integrate into the society either socially or economically or politically, leads to social cohesion problems. This triggers segregation of the society, particularly in large cities, in both social and spatial terms. In the context of accessibility, “urban transport” appears as one of the most important factors determining level of social inclusion/exclusion of the individuals or groups. In this study relation between social exclusion and transport has been evaluated as an attempt to identify socio-spatial segregation pattern of Ankara.

An Assessment Relationship between Social Exclusion and Transportation

2020 ◽  
pp. 809-838
Author(s):  
Seher Ozkazanc ◽  
Nihan Ozdemir Sonmez
Keyword(s):  
Social Exclusion ◽  
Social Cohesion ◽  
Social Inclusion ◽  
Social Groups ◽  
Spatial Segregation ◽  
Urban Transport ◽  
Segregation Pattern ◽  
Large Cities ◽  
Or Groups ◽  
Spatial Terms

Having been used extensively since the 1980s, the concept of social exclusion has given a new impetus to the discussions of poverty and disadvantageousness. The concept of social exclusion, which can be defined as the condition in which certain individuals or social groups cannot integrate into the society either socially or economically or politically, leads to social cohesion problems. This triggers segregation of the society, particularly in large cities, in both social and spatial terms. In the context of accessibility, “urban transport” appears as one of the most important factors determining level of social inclusion/exclusion of the individuals or groups. In this study relation between social exclusion and transport has been evaluated as an attempt to identify socio-spatial segregation pattern of Ankara.

Theorizing PB’s Effects on Individuals and Communities

2021 ◽  
pp. 51-80
Author(s):  
Brian Wampler ◽  
Stephanie McNulty ◽  
Michael Touchton
Keyword(s):  
Social Justice ◽  
Civil Society ◽  
Social Inclusion ◽  
Well Being ◽  
Government Support ◽  
Theory Of Change ◽  
Design Rules ◽  
Meso Level ◽  
Original Theory

This chapter develops an original “theory of change” that connects PB programs to three community-level outcomes: the promotion of accountability, expansion of civil society, and improvements in well-being. To explain the variation in outcomes, this explanatory framework includes macro-level (political context, decentralization, economic conditions) and meso-level (government support, configuration of civil society, state capacity) factors that condition PB programs’ impacts. The discussion then moves beyond the macro and meso to drill down to “variation in program design.” The chapter identifies several rules (scale/level of adoption, presence of social justice rules, program emphasis on social inclusion, vote rules, and oversight process) that significantly influence the outcomes that PB programs produce. Thus, this chapter illuminates how variation in the macro, meso, and PB design rules condition and constrain the types of outcomes associated with PB. The chapter concludes by linking the theory of change to the PB Types (introduced in Chapter 1) to theorize how each PB program type is likely to be associated with distinct impacts.

Payments for Participation of Children in Research

2018 ◽  
pp. 244-263
Author(s):  
Douglas S. Diekema
Keyword(s):  
Decision Making ◽  
Research Participation ◽  
Ethical Considerations ◽  
Parental Decision ◽  
Research Participants ◽  
Ethical Implications ◽  
Parental Decision Making ◽  
Participation In Research ◽  
Research Studies ◽  
Current Practices

Providing payment to those who participate is common practice for research studies involving both children and adults. While there may be good reasons for providing payment for research participation, there are also reasons to be concerned about the practice, especially when the subjects are children and the payment has the potential to distort parental decision-making by tempting parents to consider issues other than the welfare of their child. This chapter examines the ethical implications of providing payment to children and their parents for participation in research. After a brief survey of current practices regarding payments to research participants, the chapter will examine the distinct kinds of payments offered to research participants and their parents (Those intended to reimburse expenses and those intended to induce participation), evaluate the ethical considerations relevant to each kind of payment, and make some final recommendations concerning the provision of payments for research involving children.

Social Exclusion and Inclusion

2013 ◽  
Author(s):  
Karen Lyons ◽  
Nathalie Huegler
Keyword(s):  
Human Rights ◽  
Social Justice ◽  
Social Work ◽  
International Development ◽  
Social Exclusion ◽  
Social Inclusion ◽  
The Social ◽  
Late Twentieth ◽  
Definition Of ◽  
Late Twentieth Century

The term social exclusion achieved widespread use in Europe from the late twentieth century. Its value as a concept that is different from poverty, with universal relevance, has since been debated. It is used in Western literature about international development, and some authors have linked it to the notion of capabilities. However, it is not widely used in the social work vocabulary. Conversely, the notion of social inclusion has gained in usage and application. This links with values that underlie promotion of empowerment and participation, whether of individuals, groups, or communities. Both terms are inextricably linked to the realities of inequalities within and between societies and to the principles of human rights and social justice that feature in the international definition of social work.

The Moral of the Story: Literature and Public Ethics. Edited by Henry T. Edmondson III. Lanham, MD: Lexington Books, 2000. 272p. $75.00 cloth, $24.95 paper. Shakespeare's Political Realism: The English History Plays. By Tim Spiekerman. Albany: State University of New York Press, 2001. 208p. $16.95 paper.

2002 ◽  
Vol 96 (1) ◽  
pp. 177-178
Author(s):  
Ethan Fishman
Keyword(s):  
New York ◽  
Social Justice ◽  
Human Condition ◽  
History Plays ◽  
State University ◽  
Political Realism ◽  
English History ◽  
Basic Assumptions ◽  
Public Ethics ◽  
The Human Condition

As their scholarship indicates, Henry Edmondson and Tim Spiekerman share two basic assumptions: There exist certain enduring issues of politics, such as the nature of social justice and the legitimacy of power, and authors of fiction, drama, and poetry who write with knowledge and sensitivity about the human condition often will have something significant to say about them.

Recall of participation in research projects in cancer genetics: some implications for research ethics

2008 ◽  
Vol 3 (4) ◽  
pp. 180-184 ◽  
Author(s):  
Sarah Cooke ◽  
Gillian Crawford ◽  
Michael Parker ◽  
Anneke Lucassen ◽  
Nina Hallowell
Keyword(s):  
Research Ethics ◽  
Cancer Genetics ◽  
Clinical Care ◽  
Research Participation ◽  
Research Projects ◽  
Dna Testing ◽  
Clinical Notes ◽  
Valid Consent ◽  
Different Types ◽  
Participation In Research

The aim of this study is to assess patients' recall of their previous research participation. Recall was established during interviews and compared with entries from clinical notes. Participants were 49 patients who had previously participated in different types of research. Of the 49 patients, 45 (92%) interviewees recalled 69 of 109 (63%) study participations. Level of recall varied according to the type of research, some participants clearly recalled the details of research aims, giving consent and research procedures. Others recalled procedures (e.g. DNA testing) but were unclear about their purpose. There was no significant effect of time on recall. Some types of research participation (e.g. DNA testing) may be recalled as clinical care. We argue that such misunderstandings may have the potential to undermine participants' ongoing consent, particularly in ongoing/longitudinal studies. Valid consent may be best achieved by re-assessing the scope of consent and relating it to the nature of the interventions themselves rather than the reasons for undertaking them.

Alberta Occupational Therapists' Perspectives on and Participation in Research

1997 ◽  
Vol 64 (2) ◽  
pp. 82-88 ◽  
Author(s):  
Melissa Waine ◽  
Joyce Magill-Evans ◽  
Kerrie Pain
Keyword(s):  
Response Rate ◽  
Research Participation ◽  
Occupational Therapists ◽  
Initial Response ◽  
Advanced Degrees ◽  
Research Orientation ◽  
Additional Section ◽  
Participation In Research ◽  
Different Levels ◽  
Research Resources

To determine the current level of research participation of Alberta occupational therapists, the Edmonton Research Orientation (ERO) survey, with an additional section measuring perceptions of barriers to research, was mailed to 610 Alberta occupational therapists. From an initial response rate of 52%, there were 293 useable responses. Seventy percent of therapists reported no participation in research. There was an association between level of education and greater participation in research but participation in research was not limited to those with advanced degrees. Therapists who were actually participating in research had higher ERO scores. There were no differences between therapists at different levels of research participation in their perceptions of barriers to research. Limited time, limited research resources, concerns about the usefulness of research, and questions as to whether all therapists need to be involved in research were some of the issues raised by respondents. The results are compared to a similar study of Alberta speech-language pathologists. Recommendations for facilitating clinical research are included.

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