Ethics Support

 

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

Compliance

Researcher Awareness

Our Activities

Follow us on Twitter! @HBP_Ethics_Sppt
Check out our blog! 

Ethics Support Team

Bernd Stahl
Ethics Director
 

Simisola Akintoye     
Team Member (expertise: data protection)
 

Will Knight
Research Fellow, Compliance Manager
 

Damian Okaibedi Eke
Research Fellow, Data Governance

Shamim Patel       
EAB & Other Ethics Services
 

Thomas Näsström
Team Member (expertise: animal research)
 
 

Patty Healey       
Team Member (expertise: human research)
 

George Ogoh
Research Fellow, Data Governance

Manuel Guerrero
PORE, Ethics Rapporteurs
 

Christine Mitchell
Team Member (expertise: bioethics)

 

Ethics Structures and Information

Data Protection

You can find EU resources on Data Protection and HBP-specific information from our Data Protection Officers Beyond Research Ethics: Dialogues in Neuro-ICT Research.
 

Data Governance

Members of Ethics Support are part of the Data Governance Working Group.
 

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 Resources

For guidance, Factsheets, Standard Operating Procedures, Data Policy, and other useful information, click here.
Our blog on Ethics Support-related matters is Ethics Dialogues
 

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.

Selected Publications

 
Fothergill, T., W.Knight, B.C.Stahl and I.Ulnicane (2019) Intersectional observations of the Human Brain Project’s approach to sex and gender. Journal of Information, Communication and Ethics in Society 17(2): 128-144 doi: 10.1108/JICES-11-2018-0091.
 
Fothergill BT, Knight W, Stahl BC and Ulnicane I (2019) Responsible Data Governance of Neuroscience Big Data. Front. Neuroinform. 13:28. doi: 10.3389/fninf.2019.00028.
 
Stahl BC, Akintoye S, Fothergill BT, Guerrero M, Knight W and Ulnicane I (2019) Beyond Research Ethics: Dialogues in Neuro-ICT Research. Front. Hum. Neurosci. 13:105. doi: 10.3389/fnhum.2019.00105.
 
Stahl, B.C. and Wright, D. (2018) Ethics and Privacy in AI and Big Data: Implementing Responsible Research and Innovation. IEEE Security and Privacy 16(3): 26-33. doi: 10.1109/MSP.2018.2701164.
 
Stahl, BC., Rainey, S., Harris, E. and Fothergill, B.T. (2018) The Role of Ethics in the Data Governance of Large Neuro-ICT Projects. Journal of the American Medical Informatics Association, 25 (8), pp. 1099-1107 doi: 10.1093/jamia/ocy040.
 
 
 
This page was last updated on 24/09/2019.