Privacy as a Social Good

Kasper, Debbie

doi:10.17161/str.1808.5221

Cited by 9 publications

(8 citation statements)

References 19 publications

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“…Evans (2017, p. 1) suggests, we may be seeing "a popular uprising of regular people seeking a meaningful voice in establishing citizen-led ethical and privacy standards to advance big-data science while addressing the concerns people feel about the privacy of their health data." This shift toward collective control poses questions for privacy policies, which tend to focus on the individual right to privacy, rather than viewing privacy and control over data as a social good (Kasper, 2007). The different approaches to data governance outlined in the case studies above are situated in a broader societal narrative around privacy of health data.…”

Section: Shift From Institutional To Individual To Collective and Pubmentioning

confidence: 99%

Emerging health data platforms: From individual control to collective data governance

et al. 2020

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Health data have enormous potential to transform healthcare, health service design, research, and individual health management. However, health data collected by institutions tend to remain siloed within those institutions limiting access by other services, individuals or researchers. Further, health data generated outside health services (e.g., from wearable devices) may not be easily accessible or useable by individuals or connected to other parts of the health system. There are ongoing tensions between data protection and the use of data for the public good (e.g., research). Concurrently, there are a number of data platforms that provide ways to disrupt these traditional health data siloes, giving greater control to individuals and communities. Through four case studies, this paper explores platforms providing new ways for health data to be used for personal data sharing, self-health management, research, and clinical care. The case-studies include data platforms: PatientsLikeMe, Open Humans, Health Record Banks, and unforgettable.me. These are explored with regard to what they mean for data access, data control, and data governance. The case studies provide insight into a shift from institutional to individual data stewardship. Looking at emerging data governance models, such as data trusts and data commons, points to collective control over health data as an emerging approach to issues of data control. These shifts pose challenges as to how “traditional” health services make use of data collected on these platforms. Further, it raises broader policy questions regarding how to decide what public good data should be put towards.

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Section: Shift From Institutional To Individual To Collective and Pubmentioning

confidence: 99%

Emerging health data platforms: From individual control to collective data governance

et al. 2020

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“…An analysis of the academic literature revealed that social good has been discussed across 16 different disciplines spanning the social sciences (e.g., Kasper, 2007; K. Peters & Kashima, 2015), education (e.g., Goldweber et al, 2013), health care (e.g., Hooker, 2009), and law (Allen, 2003).…”

Section: Literature Reviewmentioning

confidence: 99%

“…When discussing social good, researchers drew on related constructs including corporate social responsibility (Gao, Lisic, & Zhang, 2014; Viswanathan et al, 2009), social profit (Gilligan & Golden, 2009), collective social entrepreneurship (Montgomery, Dacin, & Dacin, 2012), and social capital (Ellison & Mullin, 2014; Wright, 2013). Although there is a general agreement on what the construct social good refers to, there was no universally agreed upon definition, and the operationalization of the construct was in its early stages (e.g., Kasper, 2007; Dann & Dann, 2016; see Table 2). Viswanathan, Seth, Gau, and Chaturvedi (2009), for example, offer a descriptive and complex definition that reflects the comprehensive nature of the construct: “individual and community welfare encompassing a range of issues across different realms, such as preservation and improvement of the local ecology, enhancement of living conditions, and increased availability of livelihood opportunities” (p. 406; see Table 2).…”

Section: Literature Reviewmentioning

confidence: 99%

The Practice and Science of Social Good: Emerging Paths to Positive Social Impact

Barak

2018

Research on Social Work Practice

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Purpose: To explore the practice and science of social good and identify avenues for producing research and evidence-based practice in this area. The main proposition of this paper is that social good has the potential to promote ideals that directly align with social work values, offer new alliances and innovative technologies for achieving them, and spark interest in macro practice. Method: To gain an understanding of social good, a three-pronged approach was used: (a) review of multidisciplinary academic literature; (b) review of web-based information; and (c) analysis of qualitative interviews with nine social good experts. Results: The combined data indicated three social good domains: diversity and inclusion, environmental justice and sustainability, and peace and collaboration. A proposed definition and conceptual model of social good has emerged from the data: (I) social good domains; (II) unconventional systems of change; and (III) innovative technologies and approaches. Conclusions: Social good can open up new opportunities for the social work profession, together with allied disciplines, to lead the development of evidence-based practices and educational programs aimed at promoting social justice. It can bring a fresh direction to social work, rooted in the profession’s bedrock values and befitting the entrepreneurial spirit, advances and technological innovations of the 21st century.

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“…Generally, social good is understood as an action, service, or product that is of benefit to the functioning or well-being of society or that otherwise advances the interests of humankind (see Kasper, 2007; Law Dictionary, n.d.; Mor Barak, 2018). The concept of social good is sometimes used interchangeably with that of common good (e.g., Verdugo, 2013).…”

Section: Background: Social Good and Macro Social Work Practicementioning

confidence: 99%

An Ethical Foundation for Social Good: Virtue Theory and Solidarity

Garlington

Collins

Bossaller

2019

Research on Social Work Practice

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Purpose: Virtue theorists debate qualities of society leading to human flourishing. Thus, aspects of scholarship on virtue theory may refine conceptualization of social good. We focus on the virtue of solidarity and its contributions to the ethical foundations of social good, providing a core connection to macro-level social work interventions and settings. Methods: We first identify a theoretical gap in the conceptual framework of social good, then use virtue theory and the example of solidarity to connect the concept of social good to social work professional values and macro practice. Results: Our primary critique of the concept of social good is the lack of a sufficient ethical frame that addresses social justice, value foundations, or power analysis. Discussion: Without this, the discussion of social good lacks tools needed to critically assess relevant systems of change and innovative technologies. Consequently, the work of social good risks reinforcing existing status quo and oppressive systems.

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Privacy as a Social Good

Cited by 9 publications

References 19 publications

Emerging health data platforms: From individual control to collective data governance

Emerging health data platforms: From individual control to collective data governance

The Practice and Science of Social Good: Emerging Paths to Positive Social Impact

An Ethical Foundation for Social Good: Virtue Theory and Solidarity

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