Ethics Management

Ethics Management and RRI

 

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.

There is also 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 implemented, this necessitates that researchers Reduce the number of animals, Replace with less intelligent species of animals or non-animal subjects, and Refine the methods to cause the least amount of harm. In addition, general ethical principles of licensing and due care always apply.     

 

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.

 

How does the HBP support ethical research and RRI?

The HBP has a dedicated Ethics Management team who work in collaboration with the ethics and society researchers and HBP management to support best research practice. Resources available include: guidance videos for researchers and the public, workshops to engage with researchers, an ethics rapporteur network and an Ethics Advisory Board to provide expert advice and support, and a mechanism for reporting any ethical issues (PORE). In addition, there are comprehensive policies to help govern research practices, and in-depth processes to ensure compliance with ethical principles.

 

Ethics and Society Overview

Compliance

Researcher Awareness

The Ethics Support Team

Bernd Carsten Stahl      

Ethics Manager

Simisola Akintoye     

Team Member (expertise: data protection)

Tyr Fothergill     

Research Fellow

Shamim Patel       

Team Member & EAB Administration Manager

Abdul Mohammed      

Team Member (expertise: animal research)

Jo Samanta       

Team Member (expertise: human research)

Inga Ulnicane

Research Fellow

 

Ethics Structures and Information

Data Protection

You can find EU resources on Data Protection and HBP-specific information from our Data Protection Officer here.

Researcher Awareness

A key part of our work with colleagues from the Foresight Lab is raising Researcher Awareness across the HBP. 

Ethics Rapporteurs

Get to know the Ethics Rapporteurs here

 

Ethics Advisory Board

Members of the independent Ethics Advisory Board can be found here.

 

Do You Want to Raise an Ethical Issue?

You can submit an issue to the Point of Registration (PORE) by clicking here: www.hbp-pore.eu

 

Ethics Ombudsperson

For ethical issues requiring neutral external engagement, the Ombudsperson can be contacted.

 

Ethics Resources

For guidance, Factsheets, Standard Operating Procedures, and other useful information, our resources are here.

Our Events

Workshops and Conferences:

Data Governance in International Neuro-ICT Collaborations, March 20-21, Exeter College, Oxford

Webinars:

https://www.humanbrainproject.eu/en/open-ethical-engaged/events/data-protection-and-stewardship-webinar-27th-sept-2017/

Our Activities

  • Principles and Implementation of Ethics Management
  • Standard Operating Procedures
  • Identification and management triage of ethical issues (PORE)
  • Ethics Compliance
  • Interface with the European Commission
  • Management and Support of the Rapporteur Programme
  • Management and Support of the Ethics Advisory Board