Rakeiora Genomics Platform   Data access agreement

The purpose of this agreement is to explain and agree the terms under which the data can be accessed and used.  

Definitions

Authorised Personnel: Any additional named individual(s) requesting Access to the Data. 

Data: Data is a living tāonga and is of strategic value to Māori (Te Mana Raraunga charter). Data refers to controlled access data (the Data). Under this Agreement, the Data is pseudonymised. 

Data Access: Refers to an institution’s right to request access to the Data through the Rakeiora platform upon approval of this DAA.

Data Handling: Refers to an institution’s ability to analyse and manipulate the Data within the Rakeiora platform.  

Data Recipient (‘You’): Refers to the institution who requests Access to the Data through this Agreement.

Kaitiakitanga: - the intergenerational responsibility inherited by whakapapa, held by Maori who are holders of mana whenua. Through mana whenua, the mana of rangatira is established (mana rangatira - authority of decision-making). Beside the authority of mana rangatira, sits symbiotically - mana kaitiaki along with symbiotically - mana manaaki. (Rakeiora)
speaks to the hapū, iwi responsibility to be an effective steward or guardian and relates to actions that ensure a sustainable future for all people. Underpinning our existence is the need to protect and enhance Māori knowledge and practices, to strengthen whānau, hapū and iwi and to create sustainable futures. Kaitiaki have a social contract and are responsible to the communities they serve (Te Mana Raraunga charter). 

Mana - the ultimate power, authority, dignity and integrity. This mana is inherited through whakapapa, without whakapapa one cannot hold the mana in relation to a place. Derived in cascading fashion from mana atua, mana tupuna, mana ariki, mana rangatira and mana tangata. Mana is applied to other terms to denote authority and responsibility with them eg; mana manaaki and mana kaitiaki (Rakeiora)

Publications: Refers, without limitation, to any and all articles published in print journals, electronic journals, reviews, books, posters, and other written and verbal presentations of Research that have been accepted by peer review.

Rakeiora Platform: The software platform where the Data will be accessed through and analyzed on. The Data will not be removed from this platform.

Research Project: The Project for which You have requested Access to the Data.

Tākoha - a gift of responsibility that is given conditional of responsibility and with the expectation of reciprocity (Ira Tātai Whakaheke)

Tikanga Māori - Principles of Māori cultural values and beliefs ‘highly prized practices and beliefs of our forebears, our ancestors’ (Pere, 1991 p. 28) (Ira Tātai Whakaheke).  

The Originator - the original source of the sample from which genomic or health information has been sourced. (Rakeiora)


Tikanga - Responsibilities of the Data Recipient

Te Tuku i te Taonga :

You, the Data Recipient, agree to accept Tākoha over this Data, to only use the Data for the Purpose of the Project. You and your Authorised Personnel agree to abide by any usage restrictions (if any), stemming from consent, i.e. the appropriate lawful basis for processing the Data, as well as any usage restrictions stemming from the Kaitiaki and any applicable internal policies of your institution.

You agree that in handling this Data You will only do so in the Rakeiora platform and not attempt to remove the Data from this platform or let anyone else access and or manipulate the Data on your behalf.

You shall ensure that ‘all’ who have Access to the Data, namely You and Your Authorised Personnel, will be listed out, and are made aware and be bound by the terms of this Agreement. You remain solely and fully responsible for Your Authorised Personnel’s non-compliance with the provision of the Agreement.

Should You wish to share access to the Data with an external collaborator, the external collaborator must complete a separate Data Access Agreement.


Te Hau o te Taonga:

You acknowledge that Access to the Data is granted for the duration of the Project described in the contact and project information. Any use of the Data for a Project of another research field or area will need to be approved under a new Agreement.

(Identification) - You agree to preserve, at all times, the confidentiality of information and Data pertaining to The Originators. You undertake not to use or attempt to use the Data to compromise or otherwise infringe the confidentiality of information on The Originators and their right to privacy. You agree not to attempt to identify The Originators.

(IP/ownership) - You recognize that nothing in this Agreement shall operate to transfer to You any intellectual property rights to the Data. You agree not to make intellectual property claims on the Data and not to use intellectual property protection in ways that would prevent or block Access to, or use of, any element of the Data.

(Commercial use) - You agree that no research performed under this Agreement, no research products, and no traditional or indigenous knowledge will be used for commercial purposes, unless otherwise provided for in this Agreement.

(Reporting) Throughout the duration of the project you agree to provide regular reports to the Kaitiaki, disclosing results you have produced as a result of access to the data. These reports should be produced quarterly.

(Harm) You agree to hold The Originator(s) and kaitiaki harmless and to defend and indemnify all these parties against all liabilities, demands, damages, expenses, and losses arising out of Your use of the Data.

(Breach) In case of a breach of security resulting from ‘accidental’ use of Data by You and Your Authorised Personnel, which leads to disclosure of Data, then You must report this to the kaitiaki within 72 hours maximum, and follow any relevant rule as provided by the New Zealand Privacy Act 2020.

(Termination) You accept that this Agreement will terminate immediately upon ‘any’ breach by You, or its termination (see the contact and project information) or at the discretion of the Kaitiaki. If this occurs it is expected that any analysis/findings from the data will be returned to the Kaitiaki.

(Incidental findings) You will not be expected to feed back any incidental findings to Rakeiora, the Kaitiaki or the Originator.


Te Whakahoki i te Taonga:

After the agreed duration of Access to the Data you agree to return Tākoha and not to attempt to retain access or use the Data without explicit agreement of the Kaitiaki

(kawe taonga) As part of the final reporting, you agree to provide physical copies of reports detailing all the outcomes of the Data use and the wider research. You will also provide physical copies of any publications as part of this research.

(control of narrative) You agree that throughout and after the access to the Data has lapsed, you will provide Kaitiaki with draft publications, oral presentation slides etc prior to public disclosure of results with enough notice that Kaitiaki can provide feedback and approve the narrative prior to public disclosure of any kind.

(Acknowledgement) You agree to acknowledge the contribution of the kaitiaki and The Originator(s) in all oral and written presentations, disclosures, and publications resulting from all analyses of the Data. Acknowledgement in publications should include the following wording:  “This research has been done in conjunction with (the relevant Kaitiaki group) via Rakeiora. We would like to acknowledge the Kaitiaki as well as the Originators for their contribution”.


Responsibilities of the Kaitiaki


The Kaitiaki, on behalf of the relevant hapu and iwi has Kaitiakitanga of the communal cultural, natural, and biogenetic resources, and retains ultimate discretionary authority and final authority and responsibility for the approved research.

The Kaitiaki does not assume any liability by entering into this Agreement.

Rakeiora

draft version 13-06-2022