Table 2 Included soft law instruments.
Issuing authority | Document title | Year of issue | |
|---|---|---|---|
1. | Council for International Organizations of Medical Sciences (CIOMS) | International Ethical Guidelines for Health-related Research Involving Humans | 2016 |
2. | European Data Protection Board (EDPB) | Guidelines 05/2020 on consent under Regulation 2016/679 | 2020 |
3. | European Data Protection Board (EDPB) | Guidelines on Transparency under Regulation 2016/679 | 2017 |
4. | European Data Protection Supervisor (EDPS) | Preliminary Opinion 8/2020 on the European Health Data Space | 2020 |
5. | European Data Protection Supervisor (EDPS) | Preliminary Opinion on data protection and scientific research | 2020 |
6. | Global Alliance for Genomics and Health (GA4GH) | Framework for Responsible Sharing of Genomic and Health-Related Data | 2014 |
7. | World Medical Association (WMA) | Declaration of Helsinki—Ethical Principles for Medical Research Involving Human Subjects | 2013 |
8. | World Medical Association (WMA) | Declaration of Taipei—Ethical Considerations Regarding Health Databases and Biobanks | 2016 |
9. | International Society for Biological and Environmental Repositories (ISBER) | Best Practices: Recommendations for Repositories | 2018 |
10. | Nuffield Council on Bioethics | The Collection, Linking and Use of Data in Biomedical Research and Health Care: Ethical Issues | 2015 |
11. | Organisation for Economic Co-operation and Development (OECD) | Guidelines on Human Biobanks and Genetic Research Databases | 2009 |
12. | Organisation for Economic Co-operation and Development (OECD) | Recommendation of the Council on Health Data Governance | 2019 |
13. | United Nations Educational, Scientific and Cultural Organization (UNESCO) | International Declaration on Human Genetic Data | 2003 |
