Welcome to the Human Variome Project’s space dedicated to the range of ethical, social and legal issues that related to the storage and sharing of human variant data and information. Here you will find a range of useful resources that will be useful to a variety of people working in this field. Emphasis is given to the various codes and sources of guidance that related to data sharing.
This list is not intended to be exhaustive; members are encouraged to identify useful resources to share with other members. The resources here are divided into two main groups:
- General resources related to data sharing;
- Resources developed by Human Variome Project members who are directly involved in data sharing activities either through HVP Country Nodes or Gene/Disease Specific Databases.
For further information or suggestions please contact the International Coordinating Office.
Core Human Rights References
- Universal Declaration of Human Rights (UN 1948) (Article 27)
- International Covenant on Economic, Social and Cultural Rights (UN 1966) (Article 15)
UNESCO Links
- Universal Declaration on the Human Genome and Human Rights (UNESCO 1997)
- International Declaration on Human Genetic Data (UNESCO, IBC 2003)
- Universal Declaration on Bioethics and Human Rights (UNESCO 2005)
UNESCO Global Ethics Observatory resources in multiple languages
OECD Links
- OECD Principles and Guidelines for Access to Research Data from Public Funding (OECD 2007)
- Guidelines for Human Biobanks and Genetic Research Databases (OECD 2008, 2009)
- Guidelines governing the Protection of Privacy and Transborder Flows of Personal Data (OECD 2013)
European Links
- Convention on Human Rights and Biomedicine (Council of Europe 1997)
- Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Biomedical Research (Council of Europe 2005)
- Recommendation Rec (2006) 4 of the Committee of Ministers to Member States on Research on Biological Materials of Human Origin (Council of Europe 2006)
- European Society of Human Genetics: Data Storage and DNA Banking for Biomedical Research (ESHG 2003)
HUGO Links
- Statement on DNA Sampling: Control and Access (HUGO 1998)
- Statement on Human Genomic Databases (HUGO Ethics Committee 2002)
World Medical Association
- Declaration of Ethical Considerations regarding Health Databases (WMA 2002)
- Declaration of Helsinki (WMA 2013)
Other Useful International Links
- International Ethical Guidelines for Biomedical Research Involving Human Subjects (CIOMS, WHO 2002)
- International Ethical Guidelines for Epidemiological Studies (CIOMS, WHO 2008)
- Recommendations from the 2008 International Summit on Proteomics Data Release and Sharing Policy (Amsterdam Principles, 2008)
- 2012 Best Practices for Repositories: Collection, Storage, Retrieval and Distribution of Biological Material for Research (ISBER 2012)
