Master's thesis: Solutions to ethical challenges related to deployment of digital technologies in elderly care

The global growth of old people is on an upward trend, and this will have social and economic implications like stretching on the existing resources. For instance, due to the diminishing functional capacities because of aging, elderly population will be demanding for more care services thereby exerting pressure on the healthcare services. To mitigate this, there is need to develop and deploy digital health technology to promote autonomy and to enable older people to stay longer in their homes. Even though digital health technologies have proven to be an effective means in promoting independence and functional abilities of older people at their homes, possibility of incidental findings and integrity violation raises ethical concerns which needs to be resolved. The aim and the objective of this thesis were to reveal incidental findings reported, to explore on the ways to manage incidental findings in an ethical Manner and to create recommendations to help EU horizon 2020 SHAPES project in management of incidental findings.

Ethical challenges of incidental findings 

The results demonstrated existence of incidental findings due to deployment of digital health platforms in old people’s care. Privacy violation was a major issue since the end users felt monitoring and surveillance was infringing on their right of privacy. Anxiety related to the use of technology was associated with the technology being a constant reminder of the already deteriorating functional capacity. User unfriendliness and rigidity of the devices led to violation of autonomy and independence of older people. In general, the incidental findings reported resulted majorly due to older people’s preferences not being included during the designing and deployment of digital health platforms.

The results showed the existence of breach of integrity and violation of older people’s rights during deployment of digital health platforms. Breach of confidentiality and data privacy risked putting the integrity of older people into jeopardy. For instance, exposing older people to offensive content, and harm in case the sensitive information is leaked. Older people may suffer from marginalization because of digital divide and unequal distribution of digital health platforms. Also, biases and errors resulting from skewed data used in training of algorithms exposes older people to discrimination. Moreover, older people suffered loss of dignity due to dehumanization and standardization of care. For example, use of autonomous systems like care robots risks treating older people as subjects rather than moral beings. Some of the devices were homebound thereby restricting the end users to their homes thus violating their freedom of movement and independence.

Two ways to manage incidental findings were discussed. First   there is need to include ethical mechanisms right from the inception of digital health platforms.  This will enable the production of devices that are ethical by default. To achieve this, there is need to invest in training of designers, engineers, and developers on digital ethical competences. The second solution is putting the end-user’s perspective and preferences into consideration when designing and developing digital health platforms. This can be achieved by designing tailor made devices that conforms to the specific needs of the end user.

Recommendations on management of incidental findings

This study created four recommendations to help the EU horizon 2020 SHAPES project in handling the possible incidental findings that might arise from digital health platforms. The recommendations made were informed by the study findings and supported by the evidenced based guidelines. The four recommendations made are listed below.

1. The designers and developers of digital health platforms should be empowered with basic digital ethics
2. Digital health platforms should be less obtrusive by design
3. All stakeholders should be included in the design and development of digital health platforms
4. The end user’s home environment should be evaluated before the deployment of digital health platforms

This study concluded by recognizing that the failure to include all stakeholders especially end users during the designing and development of digital health platforms could result in the emergence of incidental findings. Furthermore, person centric approach, and inclusion of ethical mechanisms during designing of digital health platforms could help in solving possible incidental findings.

This study was completed using the integrated literature review. A total of 13 studies were included in the final study. 

Read Tanui's thesis Ethical management of incidental findings related to development and use of digital health platforms for older people.

Further information

Asbel Kipchoge Tanui

Global Health and Crisis Management (Master of Health care)

Tel. +358465555892