In October 2020, the King Baudouin Foundation and the Dr Daniël De Coninck Fund released a list of eight ethical principles, the ”  8Caring Technology Principles “, that technological innovations in health and well-being must meet today and in the future. 

Prior to the official publication of these principles, the King Baudouin Foundation invited representatives of the 101 Genomes Foundation to present and discuss them together during the summer of 2020.

At the end of the meeting, it was clear that these eight principles are compatible with the work of the 101 Genomes Foundation, and that they provide a welcome frame of reference on which the 101 Genomes Foundation can continue to build.

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The Dr Daniël De Coninck Fund and the King Baudouin Foundation invite organizations and individuals to subscribe to these principles and take them into account in the development of healthcare technologies by signing a charter available via a dedicated website[1].

Below are the eight guiding principles :

“  Eightguiding 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 keep the following guiding principles in mind:

PROMOTE HUMAN TECHNOLOGY AND DATA MANAGEMENT AT THE SERVICE OF CITIZENS

1/ Ensure that technology and the use of data remain in a facilitating and supportive role, serving people and society. Maximize the opportunity for citizens to make their own decisions based on their needs for help and care and their health wishes.

2/ Encourage ongoing collaboration between all players by creating an integrated technological ecosystem in which interoperability, standardized protocols and open source core technology are taken for granted. Helping patients and citizens to play their part in the development and deployment of this ecosystem.

3/ Deliver honest, reliable, transparent and understandable information on innovations in healthcare. Ensure that people can make autonomous, informed choices (genuine consent) by objectively portraying the usefulness, applicability, advantages and disadvantages of innovations. People need to be able to trust the products they adopt.

SUPPORTING COMMUNITY INVOLVEMENT

4/ Strengthen the confidence of individuals and organizations in the use of data and the design of innovations that exploit the principle by guaranteeing them ownership of their own data. Help citizens to share their data securely and use it as a lever for their personal well-being and for the general interest.

5/ Promote technological literacy, health skills and the participation of all citizens. Committed to lifelong learning for all. Ensure that everyone is involved, including the vulnerable and disadvantaged, and those requiring special attention. Innovation needs to focus on reducing digital and health divides, not on making them worse.

ENCOURAGING PARTICIPATORY GOVERNANCE

6/ Develop participative and adaptive governance of the innovation system. Encourage citizens and stakeholders to get actively involved. Adjust policies flexibly yet vigorously, based on data, experience, evidence and growing expertise.

MONITOR SYSTEM QUALITY AND CONSISTENCY

7/ Develop quality assurance systems for the innovation process, i.e. before, during and after technology development, data use and technology implementation. Control must cover content, security, information transparency, traceability, usefulness and efficiency. The lessons of experience must go hand in hand with scientific evidence. Introduce quality labels, and disseminate the results of controls and evaluations.

8/ Monitor actions and check that they remain consistent with the objectives set in terms of health and care within a broader framework of prevention, ethics and sustainability. Integrate sustainability objectives and appropriate ethical principles (e.g. human rights) into the growth path of innovation. “[2].

[1]       https://www.fondsdanieldeconinck.be/initiative/caring-technology/?lang=fr

[2]       https://www.fondsdanieldeconinck.be/initiative/caring-technology/?lang=fr