Ethical management of incidental findings related to development and use of digital health platforms for older people
Tanui, Asbel Kipchoge (2022)
2022
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Julkaisun pysyvä osoite on
https://urn.fi/URN:NBN:fi:amk-2022120827284
https://urn.fi/URN:NBN:fi:amk-2022120827284
Tiivistelmä
The purpose of this study was to reveal the ethical challenges associated with incidental findings related to the development and use of digital health platforms for older people. The primary objective was to explore ways to manage incidental findings ethically and to create recommendations for the Horizon 2020 SHAPES project. The secondary objective was to explore ethical vulnerabilities and threats to the integrity of older people related to the development and use of digital health platforms. The development and deployment of technology in older people’s care has raised several ethical issues, which needs to be addressed. These ethical issues are associated with practical, social, and psychological impacts of deploying digital health ecosystems in older people’s homes and personal spaces.
This study used the integrated literature review method to answer the research questions by revealing incidental findings related to the deployment and use of digital health ecosystems and exploring ways to manage them in an ethical manner. Three electronic databases were searched and after screening thirteen studies were included. An Inductive approach of thematic analysis was applied in this study.
The results revealed seven themes on incidental findings which include social isolation of the care receiver, user unfriendliness of the device, additional workload to the care providers, violation of user privacy, technology induced anxiety, violation of user autonomy and independence, biases and errors, and enforcement of identity. On ethical vulnerabilities and threats to the integrity of older people, the study highlighted misuses of personal data and privacy violation, lack of responsibility and accountability in case of any harm/violation, discrimination, deception, and infringement of autonomy as ethical concerns.
On ethical management of incidental findings, this study demonstrated the need to empower designers and developers with ethical competences and to take individual users’ perspective into consideration when designing and developing digital ecosystems. This study recommends the European Union Horizon 2020 SHAPES project to empower designers, developers, and care providers with digital ethical competencies, include multidisciplinary approach in design and development, deploy less obtrusive digital health ecosystems, and to evaluate individual needs and living environment before the deployment of home-bound digital ecosystems.
In conclusion, this study revealed the incidental findings reported resulted from failure to include end users’ and caregivers’ perspectives, and secondly failure to include ethical mechanisms during the designing and development phases. Ethical and integrity threats towards older people were largely on data and personal privacy breach, infringement of autonomy and loss of dignity. Overall, this study encourages the design and implementation of digital health ecosystems be multi-disciplinary, person centric, and finally designers and developers be empowered with ethical competencies to enable them to include ethical mechanisms when designing digital products.
This study used the integrated literature review method to answer the research questions by revealing incidental findings related to the deployment and use of digital health ecosystems and exploring ways to manage them in an ethical manner. Three electronic databases were searched and after screening thirteen studies were included. An Inductive approach of thematic analysis was applied in this study.
The results revealed seven themes on incidental findings which include social isolation of the care receiver, user unfriendliness of the device, additional workload to the care providers, violation of user privacy, technology induced anxiety, violation of user autonomy and independence, biases and errors, and enforcement of identity. On ethical vulnerabilities and threats to the integrity of older people, the study highlighted misuses of personal data and privacy violation, lack of responsibility and accountability in case of any harm/violation, discrimination, deception, and infringement of autonomy as ethical concerns.
On ethical management of incidental findings, this study demonstrated the need to empower designers and developers with ethical competences and to take individual users’ perspective into consideration when designing and developing digital ecosystems. This study recommends the European Union Horizon 2020 SHAPES project to empower designers, developers, and care providers with digital ethical competencies, include multidisciplinary approach in design and development, deploy less obtrusive digital health ecosystems, and to evaluate individual needs and living environment before the deployment of home-bound digital ecosystems.
In conclusion, this study revealed the incidental findings reported resulted from failure to include end users’ and caregivers’ perspectives, and secondly failure to include ethical mechanisms during the designing and development phases. Ethical and integrity threats towards older people were largely on data and personal privacy breach, infringement of autonomy and loss of dignity. Overall, this study encourages the design and implementation of digital health ecosystems be multi-disciplinary, person centric, and finally designers and developers be empowered with ethical competencies to enable them to include ethical mechanisms when designing digital products.