How does the HBP support ethical research and Responsible Research and Innovation?
The HBP has a dedicated Ethics Support team who work in collaboration with the rest of Ethics and Society and HBP management to support best research practice across the entire Project. We conduct research on matters related to ethics, governance, RRI, and policy related to neuroscience and ICT innovation. We also provide resources for HBP researchers and the public, outreach and dissemination on Ethics Support topics (have a look at our blog and Twitter account), and an Ethics Rapporteur programme. Additionally, we support the Data Governance Working Group in developing responsible data policy, and the Ethics Advisory Board who independently provide expert advice. Furthermore, we offer a mechanism for reporting any ethical issues (PORE). In addition, our Standard Operating Procedures outline comprehensive policies to help govern research practices, and manage processes to ensure compliance with ethical principles.
What ethical issues does the HBP raise, and what ethical principles are used to regulate research?
HBP research involves collecting information about people (personal data). The ethical principles of confidentiality, informed consent, not causing harm or suffering to participants, and secure storage of data are all followed. Our Data Protection pages provide more detail on the principles and processes that govern this work. There is also HBP research on human cells and tissues. The ethical principles of confidentiality (e.g. DNA information), informed consent (from donors), and licensing are abided by. Some research in the HBP involves animals. The ethical principle of the ‘3 Rs’ is always followed; this requires that researchers Reduce the number of animals, Replace them with less intelligent species of animals or non-animal subjects (e.g. simulations), and Refine the methods to cause the least possible amount of harm. In addition, the general ethical principles of licensing and due care always apply to all forms of HBP research.
What does ‘Responsible Research and Innovation’ mean? Why it is necessary?
Responsible Research and Innovation (RRI) is a way of linking the advances and innovations in technology and medicine with ethical approaches and social responsibility. It is important because it helps companies and researchers to anticipate and reflect on how to make their discoveries of benefit to society. For more information, visit ORBIT-RRI.
Ethics and Society Overview
- Ethics Support in the HBP
- Compliance Management
- Support of the Ethics Advisory Board
- Ethics Rapporteur Programme
- Ethics Support Outreach and Dissemination
- Ethics-Related Data Governance
- Data Protection
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Check out our blog!
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Ethics Support Team
Ethics Structures and Information
Do You Want to Raise an Ethical Issue?
You can submit an issue here.
Ethics Advisory Board
Members of the independent Ethics Advisory Board can be found here.