Abstract:The web is increasingly inhabited by the remains of its departed users, a phenomenon that has given rise to a burgeoning digital afterlife industry. This industry requires a framework for dealing with its ethical implications. We argue that the regulatory conventions guiding archaeological exhibitions could provide the basis for such a framework. The number of "dead" profiles on Facebook has been estimated to increase at a rate of roughly 1.7 million per year, only in the US 1. Depending on the future rate of … Show more
“…These included suggestions for next steps, including the extension of data donation to corporate data by means of data philanthropy schemes, and the addition of other data sources, such as health-related data collected by medical or lifestyle wearable devices. The latter raises important ethical issues beyond the scope of the present volume, such as the question of how to treat the digital remains of the dead (Öhman and Floridi 2018). Finally, the ethical code for PMDD proposed in this volume could eventually be extended to include donations made by living individuals, but for the reasons explained in the following chapters, we considered it ethically preferable to begin with deceased donations.…”
While donation schemes with dedicated regulatory frameworks have made it relatively easy to donate blood, organs or tissue, it is virtually impossible to donate one's own medical data. The lack of appropriate framework to govern such data donation makes it practically difficult to give away one's data, even when this would be within the current limits of the law. Arguments for facilitation of such a process have been advanced but so far have not been implemented. Discussions on the ethics of using medical data tend to take a system-centric perspective and focus on what researchers and the health service may or may not do with data that are placed within their trust. Rarely, if ever, is the question of the data subjects preferences addressed beyond practical matters of obtaining valid consent. This constitutes an important omission in the ethical debate, which this volume seeks to address.
“…These included suggestions for next steps, including the extension of data donation to corporate data by means of data philanthropy schemes, and the addition of other data sources, such as health-related data collected by medical or lifestyle wearable devices. The latter raises important ethical issues beyond the scope of the present volume, such as the question of how to treat the digital remains of the dead (Öhman and Floridi 2018). Finally, the ethical code for PMDD proposed in this volume could eventually be extended to include donations made by living individuals, but for the reasons explained in the following chapters, we considered it ethically preferable to begin with deceased donations.…”
While donation schemes with dedicated regulatory frameworks have made it relatively easy to donate blood, organs or tissue, it is virtually impossible to donate one's own medical data. The lack of appropriate framework to govern such data donation makes it practically difficult to give away one's data, even when this would be within the current limits of the law. Arguments for facilitation of such a process have been advanced but so far have not been implemented. Discussions on the ethics of using medical data tend to take a system-centric perspective and focus on what researchers and the health service may or may not do with data that are placed within their trust. Rarely, if ever, is the question of the data subjects preferences addressed beyond practical matters of obtaining valid consent. This constitutes an important omission in the ethical debate, which this volume seeks to address.
“…This paper poses such responses to this problem as growth-oriented and unsustainable in the long-term, using the LIMITS model to show how the maintenance of digital remains does not always contribute to well-being or allow for flourishing. Services for digital remains that are most in-line with the LIMITS model are those that Öhman & Floridi (2018) term "information management services" which ensuring that "assets are passed on (or destroyed) on death" (pp. 318), rather than being given new life, or in other cases even sustained.…”
Technological innovation depends on earthly resources. As such, the drive to continuous growth that has propelled technology forward is also in direct competition with a planet that is reaching capacity. This expansion and consumption model has both supported and neglected the data of the dead, which both proliferates and languishes. For example, as researchers across disciplines have noted, the dead may soon outnumber the living on social media. Questions about digital remains should attend not only to social media profiles but also to the life cycles of data. This paper considers environmental and resource-related questions about the traces we leave when we depart. To do this work, a theoretical methodological approach following the Computing within LIMITS model (Nardi et al, 2018) is employed to consider the accumulation of data that remains after users have departed from their earthly (and digital) lives. LIMITS is a sustainability model that asks researchers to (1) question growth, (2) consider models of scarcity, and (3) reduce energy and material consumption. That is, this paper questions the life of digital data that can be maintained and can even grow after a user passes on. In addition to questions about mourning, memorializing, and archiving the dead, the LIMITS model prompts ethical questions about how to bury our dead data responsibly and sustainably in the face of exponential growth.
“…Control and privacy of one's personal data such as emails (Harbinja, this issue) is also a reflection of respect for their autonomy (Sanches et al, 2019). € Ohman and Floridi (2018) advanced the ethical framing of digital remains as the "informational corpse of the deceased" arguing for the need for frameworks to regulate the commercial use of such remains aligned to the value of human dignity and prevention of commercial exploitation. However, the examples above are limited and more interdisciplinary research is needed in this particularly important area.…”
Section: Ethical Issues Surrounding Digital Remainsmentioning
This special issue entitled "Futures of Digital Death: Mobilities of Loss and Commemoration" explores the topic of digital death and how technologies are reconfigured by and reconfiguring social relationships with the deceased and dying loved ones as well as the larger ecosystem supporting such relationships. This Introduction article starts with an overview of the past research on digital death intended to provide a relevant context for the five papers included in this issue. Then, we reflect on how the current papers, or the present research, build on the past and can be used to address existing gaps and to inform future new research directions in order to move the field forward.
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