- Promotion of voluntary, anonymized data donations for use in the public interest, in particular for health research.
- Data donations must be voluntary, anonymized and in compliance with the state of the art in terms of privacy.
- Infrastructure and consent models should ensure data sovereignty and controlled, cascading consent from donors.
- Restrict use of data to non-commercial purposes; decision on use by a mixed, ethics-based committee.
Submitted text
The Federal Council is instructed to submit to Parliament possible solutions as to how the Provision of personal data on an anonymous basis (data donation) may be funded for use in the public interest, particularly for health services research.
Justification
The Corona pandemic has shown us how essential data is in crisis situations. In order to correctly assess scenarios of health hazards and medical resources, but also to better understand and cope with the economic and social consequences of a crisis, it is necessary to have Data an indispensable basis. Anonymized information on a large scale plays a crucial role in the planning of measures.
With this realization, the time has come to look at conceptually with the voluntary donation of dataThe aim of this study is to explore the possibility of using suitable donation vehicles, their sponsorship and design, in order to provide a solid basis for research and science. Several studies and pilot projects have shown that a high proportion of the population was willing to provide their data during the Corona pandemic (1).
For the concept of data donation, data must be exclusively voluntary and anonymous recorded. The privacy of the individual must be preserved in accordance with the state of the art. The following principles should be taken into account for the development of the solution approaches:
1. the infrastructure for collecting, storing, using and possibly sharing the donated data must allow the donor to control his or her data (data sovereignty)
2. personal consent to individual data donation must be preserved, for example using a cascaded structured consent model (2)
3. the use of the donated data is limited to non-commercial purposes, serves the public interest and must be transparent and clearly described
4. a mixed committee including experts from ethics decides on a case-by-case basis on the use of the available data
(1) Sotomo study of May 25, 2020 commissioned by the FOPH. on the federal tracing app states that there is no general skepticism against any further use of the collected data, but that 73 percent of the respondents are willing to share their collected personal data in anonymized form with the scientific community, provided it serves to contain the coronavirus.
(2) Infobrief Nr 18 of the German Ethics Council from January 2018
Statement of the Federal Council of 2.9.20
The provision of personal, health-related data for multiple use is in line with the thrust of the Federal Council’s Health 2030 Strategy “Promoting the digitization and use of data”. As part of the work in fulfillment of the Postulate 15.4225 Humbel “Better use of health data for high-quality and efficient health care”. solutions are being developed that take into account, among other things, the issue of data donation. The necessary framework conditions are also to be examined in depth. The Federal Council is of the opinion that this work already takes into account the concerns of the postulate.