The document outlines an 'Ethical by Design' manifesto emphasizing the need for a human-centered approach in the design of assistive technologies, particularly for individuals with dementia. It highlights principles like balancing privacy with accessibility, fostering transparency, and promoting shared decision-making among users. The manifesto stresses the importance of continuous reflection on design practices to ensure technology serves societal needs while respecting individual rights.

1. Ethical by Design:
A Manifesto
Prof Maurice D. Mulvenna

2. Publications
• Mulvenna, Maurice, Hutton, Anthony, Coates, Vivien,
Martin, Suzanne, Todd, Stephen, Bond, Raymond and
Moorhead, Anne (2017) Views of Caregivers on the Ethics
of Assistive Technology used for Home Surveillance of
People Living with Dementia. Neuroethics, 10 (2): 255-266.
• Boger, Jennifer, Jackson, Piper, Mulvenna, Maurice,
Sixsmith, Judith, Sixsmith, Andrew, Mihailidis, Alex, Kontos,
Pia, Polgar, Janice, Grigorovich, Alisa and Martin, Suzanne
(2016) Principles for Fostering the Transdisciplinary
Development of Assistive Technologies. Disability and
Rehabilitation: Assistive Technology 12(5): 480-490.

3. • User at centre of design process (UCD)
• User experience (UX)
• Contextual design
• Action research
• Participatory design
• Co-creation
Related work
Literature

4. • Discourse analysis research: humanist, modernist, political economy and
change management
• Friedman and Kahn: embodied position (one’s own values), exogenous
position (societal values), and interactional position (values of the technology
user)
• Exploring principles relating to the development of assistive technologies
from a transdisciplinary perspective, including complexity and holism,
relationships, communication and transformation
• Advance on the privacy by design approach in the specific area of video
surveillance
Related work
Experience

5. • “If properly placed being mindful of privacy it
allows the person to live at home for longer and
remain independent”
• “If managed appropriately, I feel that this
concept could enable someone with dementia
to remain at home for longer. Respecting the
individual rights is paramount and this concerns
me. I think education and demonstration would
be beneficial”
• “If it is limited to movement and hallways I
would be more comfortable but in living rooms,
bed rooms you are taking away human rights –
big issue. Everyone is an individual – even with
dementia”
Example
Video surveillance

6. • “Monitoring safety, mobility, bringing peace of
mind to carers. Must be suitable circumstances,
respecting necessary privacy with proper
permissions and for right reasons”
Example
Video surveillance

7. • “If used properly, this could provide great
support for those with dementia, provide
comfort for those who are caring for them and
provide valuable insight into the behaviours that
those with dementia exhibit. It could allow
relatives living abroad the opportunity of being
involved in caring for someone with dementia;
like speed cameras, they can change the
behaviours of people. Carers who know and are
aware of the presence of a camera will afford
the person the correct amount of time being
paid for and deliver a better quality of care”
Example
Video surveillance

8. • ‘Politicisation of data’
Problems ahead

9. • Design to support the people who will be using the product or service by
engendering empathy for users.
• Provide enough information for people to make informed decisions at every
stage about whether, when, and how to use the product or service.
• Respect people’s right to choose how they engage with the product or
service; offer alternatives or customisation.
Ethical By Design
Manifesto principles

10. • Balance appropriate privacy and security with equitable access by as many
systems and people as possible, globally
• Seek to integrate with and support the progression of policy
• Actively look for and challenge biases and values that may be reflected in a
product or service design
Ethical By Design
Manifesto principles
raises the question if one should be explicit about
where and why a service is not available (e.g. in
locations / countries where google related systems
are illegal), and if we should point to ways around
this (that are itself officially illegal but in fact do
enable these services, like the use of VPN)

11. • Complement differing needs, abilities, viewpoints and morals
• Support shared decision making and feedback
• Aim for economically, environmentally, and socially sustainable designs
Ethical By Design
Manifesto principles

12. • Integrate planning for how to handle failure, including transparency and
reporting
• Be realistic about what is possible and needed
• Support the product or service throughout its lifespan
Ethical By Design
Manifesto principles
include the need to end a
service when it is supposed to
stop, by removing or disabling
any pointers to it and having
mirror (or copy) sites removed.

13. Context

14. • Tech is not above us. It should be governed by all of us, by our democratic institutions. It should play by the
rules of our societies. It should serve our needs, both individual and collective, as much as our wants.
• Progress is more than innovation. We are builders at heart. Let us create a new Renaissance. We will open
and nourish honest public conversation about the power of technology. We are ready to serve our societies. We will
apply the means at our disposal to move our societies and their institutions forward.
• Let us build from trust. Let us build for true transparency. We need digital citizens, not mere consumers. We
all depend on transparency to understand how technology shapes us, which data we share, and who has access to
it. Treating each other as commodities from which to extract maximum economic value is bad, not only for society
as a complex, interconnected whole but for each and every one of us.
• Design open to scrutiny. We must encourage a continuous, public, and critical reflection on our definition of
success as it defines how we build and design for others. We must seek to design with those for whom we are
designing. We will not tolerate design for addiction, deception, or control. We must design tools that we would love
our loved ones to use. We must question our intent and listen to our hearts.
• Let us move from human-centered design to humanity-centered design. We are a community that
exerts great influence. We must protect and nurture the potential to do good with it. We must do this with attention
to inequality, with humility, and with love. In the end, our reward will be to know that we have done everything in our
power to leave our garden patch a little greener than we found it.
Context
Techfestival. The Copenhagen Letter, 2017

15. • Can ethical concerns inherently be addressed by appropriate designs?
• How can such concerns be communicated | resolved | discussed between
different disciplines such as innovation management, industrial product
design, software engineering?
• Can agile and lean concepts from software development (and other viable
techniques) help inform ethical service and product design?
• Accommodating all perspectives – user, funder, designer…
• Early first tentative steps but FAT and Copenhagen Letter shows that there is
a common ground and perhaps the time has come
• Next step is verification by audits to test principles
Conclusions

16. Thanks
Questions?