NHMRC Public Consultations

To:                   National Health and Medical Research Council

From:                    Professor Maggie Walter

Date                       7^th June 2017

Re: NHMRC Consultation on revised Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (draft, 2017); and Keeping Research on Track ll (KROT) (draft, 2017)

Thank you for the opportunity to contribute to the consultation on the documents: Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (draft, 2017); and Keeping Research on Track ll (KROT) (draft, 2017).  

Commentary Overview:
The content and intent of the earlier documents are largely reflected in the draft 2017 versions. The most significant changes appear related to language and the adoption of a rights based approach. But there are also less obvious changes that cause disquiet. More critically, the revised documents contain serious gaps. They do not reflect that the terrain of Aboriginal and Torres Strait Islander related research has changed substantially in the last 14 years in terms of data type and analytical methods. Nor do they reflect the substantial changes in how Aboriginal and Torres Strait Islander people understand research and our own research participation. These omissions compromise the documents’ capacity to provide an ethical research framework, now and into the future.  

Commentary on Changes

Changes that are commended include:

• Now clearly apply to all Aboriginal and Torres Strait Islander research not just health research
• Now directly addresses the topic of consent and defines more clearly what consent is
• More emphasis on risk management processes
• More emphasis on the need for written agreements between the researched and the researchers and details of what could/should be in such agreements
• Contain more practical suggestions on how to ensure research is ethical
• The Guidelines refer directly to UNDRIP as part of the overall picture of research ethics

Less positive changes include:

• There is a subtle change in the language to be more about Aboriginal and Torres Strait Islander people/s in the 2017 versions. Less ‘our’ and more ‘their’. This is more than semantics; it moves the Indigene from the authority to back to being the subject of ethical research. This change undermines the key strength of the 2003/2005 documents; that they were clearly developed by Aboriginal and Torres Strait Islander people and reflected our values, aspirations and understandings of ethical and unethical research practices.  
• This change is tone is magnified by moving the Guidelines front matter to the website. This is a retrograde step. The context is central to helping researchers understand the six values, why they are needed and how they should be reflected in the research process. It is not just padding that can be pulled to reduce the size of the document.

Gaps in the 2017 Draft Guidelines and KROT

The research landscape has changed significantly since the original documents were released, yet this is not reflected in the 2017 drafts. Significant omissions are outlined below.

• Aboriginal and Torres Strait Islander research practice is now far more diverse
  The original Guidelines and KROT ll focussed on a primary model of research practice whereby non-Indigenous researchers seek to collect and analyse data from an Aboriginal and Torres Strait Islander, often remote, community. This singular approach is replicated and further embedded in the 2017 versions as per the detail around the eight steps of the research journey.
  
  What was outmoded in 2003/2005 is outdated in 2017. There remains a central place for the traditional model but both revised documents should also refer to the diversity of Aboriginal and Torres Strait Islander research practice and processes inclusive of research based around: social media; the human genome; geo-spatial mapping, big data and community led research to name just a few newer models now in common practice and the particular ethical issues they raise.
• Aboriginal and Torres Strait Islanders are now more likely to be researchers themselves
  • Rising numbers of Aboriginal and Torres Strait Islander research higher degree candidates/academics mean Indigenous research is now more likely to be by Aboriginal and Torres Strait Islander researchers. Researching within your own community, however, creates specific ethical pressure points not addressed within 2017 documents.
  • The use and misuse of Aboriginal and Torres Strait Islander researchers in research practice and process is an increasingly common ethical issue.  How to work ethically with Indigenous researchers needs to be included in both documents.
• No discussion of data sharing, data linkage and data power
  In 2003 data usage was largely restricted by statistical power to their original collection purpose. In 2017 datasets, primarily quantitative, are increasingly combined in very large-scale data linkage projects, many of which use Indigenous status as a primary comparator variable.  Such analytical methods pose distinct ethical issues. These include: how are the originally negotiated ethical practices ensured in subsequent use? How are the six ethical values considered and adhered to in the reuse of data? How are administrative data understood ethically? How are the obligations around consent understood and ensured in relation to data reuse, data linkage?  
  
  
• Indigenous Data Sovereignty is central to ethical research practice
  Indigenous Data Sovereignty refers to Indigenous governance of data. The key purpose is to:
  • Assert Indigenous rights and interests in relation to data
  • Ensure Indigenous data are safeguarded and protected
  • Ensure quality/integrity of Indigenous data and collection
  • Advocate for Indigenous involvement in governance of data repositories
  • Assert Indigenous rights in relation to collection of, and access to, Indigenous data

Principles of Indigenous data sovereignty are increasingly incorporated into research practice frameworks. For example in Canada, OCAP (Ownership, Control, Access and Participation) Principles developed by First Nations Information Governance Committee (2005) which revolve around notions of the collective ownership of group information, Nations’ management of access to and physical possession of data and research self-determination have been adopted by the national statistical agency. Similar changes are occurring in New Zealand through the Maori Data Sovereignty Network Charter (see Te Mana Raraunga 2016) and awareness and activity is growing in Australia (see Kukatai and Taylor 2016).

Neither of the two draft documents make to the principles and/or practice of Indigenous data sovereignty. In documents that intend to provide guidance to ensure ethical Indigenous research over probably the next decade, this is an oversight.

In summary, thank you again for the opportunity to participate in this consultation. I commend the positive changes made in the Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (draft, 2017) and Keeping Research on Track ll (KROT) (draft, 2017). 

However, as they currently stand, the revised documents are not fully adequate for their purpose of providing guidance to researchers, universities, participants, communities on the conduct of ethical research relating to Aboriginal and Torres Strait Islander peoples is conducted.  I strongly suggest that the renewal process for continued past the current documents to more fully address the current and emerging research ethical challenges for Aboriginal and Torres Strait Islander peoples, communities and Indigenous issues.

I am happy to clarify or elaborate any other arguments outlined above.

Kind Regards

Maggie Walter

Professor Maggie Walter

Pro Vice-Chancellor Aboriginal Research and Leadership

PB 22 University of Tasmania 7000

Hobart, Tasmania, Australia

Ph: +61 3 6226 2874; Mob: [NHMRC has removed personal information]

Margaret.Walter@utas.edu.au

References:

Ownership, Control, Access, and Possession (OCAP) or Self-Determination Applied to Research: A Critical Analysis of Contemporary First Nations Research, and Some Options for First Nations Communities, First Nations Centre, October 2005 <accessed 7 June 2017> http://www.naho.ca/documents/fnc/english/FNC_OCAPCriticalAnalysis.pdf

Te Mana Raraunga – Maori Data Sovereignty Network Charter (2016) <accessed 7 June 2017> http://planetmaori.com/Files/Content/2016/Te_Mana_Raraunga_Charter.pdf

Kukutai and J. Taylor (eds) Indigenous Data Sovereignty: Towards an Agenda. CAEPR Research Monograph, 2016/34. ANU Press. Canberra.

To:                   National Health and Medical Research Council

From:                    Professor Maggie Walter

Date                       7^th June 2017

Re: NHMRC Consultation on revised Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (draft, 2017); and Keeping Research on Track ll (KROT) (draft, 2017)

Thank you for the opportunity to contribute to the consultation on the documents: Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (draft, 2017); and Keeping Research on Track ll (KROT) (draft, 2017).  

Commentary Overview:
The content and intent of the earlier documents are largely reflected in the draft 2017 versions. The most significant changes appear related to language and the adoption of a rights based approach. But there are also less obvious changes that cause disquiet. More critically, the revised documents contain serious gaps. They do not reflect that the terrain of Aboriginal and Torres Strait Islander related research has changed substantially in the last 14 years in terms of data type and analytical methods. Nor do they reflect the substantial changes in how Aboriginal and Torres Strait Islander people understand research and our own research participation. These omissions compromise the documents’ capacity to provide an ethical research framework, now and into the future.  

Commentary on Changes

Changes that are commended include:

• Now clearly apply to all Aboriginal and Torres Strait Islander research not just health research
• Now directly addresses the topic of consent and defines more clearly what consent is
• More emphasis on risk management processes
• More emphasis on the need for written agreements between the researched and the researchers and details of what could/should be in such agreements
• Contain more practical suggestions on how to ensure research is ethical
• The Guidelines refer directly to UNDRIP as part of the overall picture of research ethics

Less positive changes include:

• There is a subtle change in the language to be more about Aboriginal and Torres Strait Islander people/s in the 2017 versions. Less ‘our’ and more ‘their’. This is more than semantics; it moves the Indigene from the authority to back to being the subject of ethical research. This change undermines the key strength of the 2003/2005 documents; that they were clearly developed by Aboriginal and Torres Strait Islander people and reflected our values, aspirations and understandings of ethical and unethical research practices.  
• This change is tone is magnified by moving the Guidelines front matter to the website. This is a retrograde step. The context is central to helping researchers understand the six values, why they are needed and how they should be reflected in the research process. It is not just padding that can be pulled to reduce the size of the document.

Gaps in the 2017 Draft Guidelines and KROT

The research landscape has changed significantly since the original documents were released, yet this is not reflected in the 2017 drafts. Significant omissions are outlined below.

• Aboriginal and Torres Strait Islander research practice is now far more diverse
  The original Guidelines and KROT ll focussed on a primary model of research practice whereby non-Indigenous researchers seek to collect and analyse data from an Aboriginal and Torres Strait Islander, often remote, community. This singular approach is replicated and further embedded in the 2017 versions as per the detail around the eight steps of the research journey.
  
  What was outmoded in 2003/2005 is outdated in 2017. There remains a central place for the traditional model but both revised documents should also refer to the diversity of Aboriginal and Torres Strait Islander research practice and processes inclusive of research based around: social media; the human genome; geo-spatial mapping, big data and community led research to name just a few newer models now in common practice and the particular ethical issues they raise.
• Aboriginal and Torres Strait Islanders are now more likely to be researchers themselves
  • Rising numbers of Aboriginal and Torres Strait Islander research higher degree candidates/academics mean Indigenous research is now more likely to be by Aboriginal and Torres Strait Islander researchers. Researching within your own community, however, creates specific ethical pressure points not addressed within 2017 documents.
  • The use and misuse of Aboriginal and Torres Strait Islander researchers in research practice and process is an increasingly common ethical issue.  How to work ethically with Indigenous researchers needs to be included in both documents.
• No discussion of data sharing, data linkage and data power
  In 2003 data usage was largely restricted by statistical power to their original collection purpose. In 2017 datasets, primarily quantitative, are increasingly combined in very large-scale data linkage projects, many of which use Indigenous status as a primary comparator variable.  Such analytical methods pose distinct ethical issues. These include: how are the originally negotiated ethical practices ensured in subsequent use? How are the six ethical values considered and adhered to in the reuse of data? How are administrative data understood ethically? How are the obligations around consent understood and ensured in relation to data reuse, data linkage?  
  
  
• Indigenous Data Sovereignty is central to ethical research practice
  Indigenous Data Sovereignty refers to Indigenous governance of data. The key purpose is to:
  • Assert Indigenous rights and interests in relation to data
  • Ensure Indigenous data are safeguarded and protected
  • Ensure quality/integrity of Indigenous data and collection
  • Advocate for Indigenous involvement in governance of data repositories
  • Assert Indigenous rights in relation to collection of, and access to, Indigenous data

Principles of Indigenous data sovereignty are increasingly incorporated into research practice frameworks. For example in Canada, OCAP (Ownership, Control, Access and Participation) Principles developed by First Nations Information Governance Committee (2005) which revolve around notions of the collective ownership of group information, Nations’ management of access to and physical possession of data and research self-determination have been adopted by the national statistical agency. Similar changes are occurring in New Zealand through the Maori Data Sovereignty Network Charter (see Te Mana Raraunga 2016) and awareness and activity is growing in Australia (see Kukatai and Taylor 2016).

Neither of the two draft documents make to the principles and/or practice of Indigenous data sovereignty. In documents that intend to provide guidance to ensure ethical Indigenous research over probably the next decade, this is an oversight.

In summary, thank you again for the opportunity to participate in this consultation. I commend the positive changes made in the Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (draft, 2017) and Keeping Research on Track ll (KROT) (draft, 2017). 

However, as they currently stand, the revised documents are not fully adequate for their purpose of providing guidance to researchers, universities, participants, communities on the conduct of ethical research relating to Aboriginal and Torres Strait Islander peoples is conducted.  I strongly suggest that the renewal process for continued past the current documents to more fully address the current and emerging research ethical challenges for Aboriginal and Torres Strait Islander peoples, communities and Indigenous issues.

I am happy to clarify or elaborate any other arguments outlined above.

Kind Regards

Maggie Walter

Professor Maggie Walter

Pro Vice-Chancellor Aboriginal Research and Leadership

PB 22 University of Tasmania 7000

Hobart, Tasmania, Australia

Ph: +61 3 6226 2874; Mob: [NHMRC has removed personal information]

Margaret.Walter@utas.edu.au

References:

Ownership, Control, Access, and Possession (OCAP) or Self-Determination Applied to Research: A Critical Analysis of Contemporary First Nations Research, and Some Options for First Nations Communities, First Nations Centre, October 2005 <accessed 7 June 2017> http://www.naho.ca/documents/fnc/english/FNC_OCAPCriticalAnalysis.pdf

Te Mana Raraunga – Maori Data Sovereignty Network Charter (2016) <accessed 7 June 2017> http://planetmaori.com/Files/Content/2016/Te_Mana_Raraunga_Charter.pdf

Kukutai and J. Taylor (eds) Indigenous Data Sovereignty: Towards an Agenda. CAEPR Research Monograph, 2016/34. ANU Press. Canberra.