In October 2020, the King Baudouin Foundation and the Dr Daniël De Coninck Fund communicated the list of eight ethical principles, the "...". 8 Caring Technology Principles These are the "challenges" that technological innovations in health and wellness must address today and in the future.
Prior to the official publication of these principles, the King Baudouin Foundation invited the representatives of Fondation 101 Génomes to present and discuss them together during the summer of 2020.
As a result of this meeting, it emerged that these eight principles are compatible with the work of the 101 Genomes Foundation and provide a welcome frame of reference. on which the work of the 101 Genomes Foundation can continue to be built.
The Dr Daniël De Coninck Fund and the King Baudouin Foundation invite organisations and individuals to subscribe to these principles and to take them into account in the development of health technologies by signing a charter available on a dedicated website.[1].
These eight guiding principles are outlined below:
« Eight guiding principles for caring technology
When using technology to improve the health-related quality of life of people in their daily lives, it is important to ensure that the following guiding principles are in place to guide our actions:
PROMOTING HUMAN TECHNOLOGY AND DATA MANAGEMENT AT THE SERVICE OF THE CITIZEN
1/ Ensure that technology and data use retain a facilitative and supportive role, serving people and society well. Maximize the opportunity for citizens to make their own decisions based on their needs for assistance and care and their health wishes.
2/ Encourage ongoing collaboration among all stakeholders by creating an integrated technology ecosystem in which interoperability, standardized protocols and core open source technology are a given. To help patients and citizens participate optimally in the development and deployment of this ecosystem.
3/ Provide honest, reliable, transparent and understandable information on health care and health innovations. Ensure that individuals can make autonomous and informed choices (true consent) by objectively depicting the usefulness, applicability, advantages and disadvantages of innovations. People must be able to trust the products they adopt.
SUPPORT THE SOCIETAL ANCHORING
4/ Strengthen the confidence of individuals and organizations in the use of data and the design of innovations that exploit it by ensuring their ownership of their own data. Helping citizens to share their data securely and to use it as a lever for their personal well-being and for the public interest.
5/ Promote technological literacy, health skills and participation of all citizens. Commit to lifelong learning for all. Ensure that everyone is involved, including the vulnerable and disadvantaged and those requiring special attention. Innovation must focus on reducing the digital and health gaps, not contributing to their widening.
ENCOURAGING PARTICIPATORY GOVERNANCE
6/ Develop participatory and adaptive governance of the innovation system. Encourage citizens and stakeholders to become actively involved. Adjust policies flexibly, yet vigorously, on the basis of data, experience, evidence and growing expertise.
MONITOR THE QUALITY AND CONSISTENCY OF THE SYSTEM
7/ Develop quality assurance systems for the innovation process, i.e. before, during and after technology development, data use and technology implementation. Control should cover content, security, transparency of information, traceability, usefulness and efficiency. Lessons from experience must go hand in hand with scientific evidence. Introduce quality labels and disseminate the results of monitoring and evaluation.
8/ Monitor actions and check that they remain consistent with the objectives set for health and care in a broader framework of prevention, ethics and sustainability. Integrate sustainability objectives and appropriate ethical principles (e.g. human rights) into the path of innovation growth. »[2].
[1] https://www.fondsdanieldeconinck.be/initiative/caring-technology/?lang=fr
[2] https://www.fondsdanieldeconinck.be/initiative/caring-technology/?lang=fr
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