Bridge2AI Voice Registered Access Agreement

Authorized Researcher means the researcher that signs this data access agreement, and is responsible for ensuring that the Research Team respects the conditions of this agreement in using the Data.  

Data means the data, in whole or in part, that is made accessible to You by the Data Provider on the basis of this Agreement, including metadata, and any enriched or derived data. It includes, but is not limited to, representations, observations, narratives or measurements that could be used as the basis for further analysis, calculation or reasoning, regardless of the manner of their expression or the medium used to represent them.

Data Provider means the legal entity, or organisation, that grants Authorized Researchers access to the Data, and acts as the formal data custodian responsible for performing oversight and stewardship functions relative to the Data.

Research Team means You and other qualified researchers at Your institution that collaborate in using the Data for research. 

External Collaborators means qualified researchers outside of Your institution that collaborate in Your research, and who have completed a Registered Data Access Agreement and are duly authorized to access and use the Data.

 

  1. Purpose.

You agree to use the Data exclusively for commercial and non-commercial research purposes. In completing this agreement, You confirm that You and your Research Team have sufficient training and research expertise to use the data in a manner that protects the rights and interests of research participants. You agree to remain accountable for your use of the Data, as well as the use thereof by members of Your Research Team.

You agree to respect restrictions on data use arising from public law and private law, research ethics guidance, contracts, informed consent materials, consortium and institutional policies and research ethics requirements that are applicable to you.

You agree to obtain all approvals and authorizations that the Data Provider requires you to hold, and maintain them throughout the entire period of data use and data retention. 

  1. Scientific Publications and Research Outputs. 

In publishing the findings from Your research, You agree to include the attribution statement that is associated to the dataset.  Such an attribution statement provides clear instructions on how to attribute the Research Team, and/or the database or biobank of origin, and/or the dataset.

In addition, You agree that the publications arising from Your research will not contain the personal data of research participants. Such publications will not contain information that could reasonably be expected to cause a research participant to experience harm or stigmatization. 

  1. Intellectual Property. 

The Data Provider and the B2AI-Voice Consortium provide no guarantees that the Bridge2AI Voice Data is free of third-party intellectual property rights, database rights, and other related rights.

Nothing in this Agreement shall operate to transfer to You any intellectual property rights in or relating to the Data. 

You agree not to use intellectual property protection, database rights, or related rights in a way that could prevent or limit access to, or use of, any element of the Data or research conclusion derived from it.

You can elect to perform further research that would add intellectual and resource capital to the Data and decide to obtain intellectual property rights on these downstream discoveries.

  1. Re-identification, stigmatization, and harm. 

You agree not to attempt to re-identify research participants, nor to take any actions that could reasonably be expected to result in the re-identification thereof. You further agree not to attempt to contact or communicate with the research participants.

You agree not to use the Data in a manner that is reasonably anticipated to cause research participants, their families, their communities, or members of specific populations to experience harm or stigmatization.  

  1. Data Transfer. 

You agree not to transfer or to disclose the Data to third parties outside of Your Research Team. Should You wish to share the Data with external collaborator(s), they must first complete a Data Access Agreement authorizing them to access and use the Data. You are responsible for ensuring that external collaborator(s) have been duly authorized to access and use the Data before transferring the Data to them.

Notwithstanding, the Data can be transferred or disclosed to third parties for the purpose of ensuring compliance with the monitoring and audit requirements that research funding agencies, sponsors, and regulators impose, or with binding public law. You may also disclose the Data to third-party service providers that provide services that are integral to the performance of the research activities described in this agreement. 

In all cases, you must bind recipient third parties to hold the Data according to standards of confidentiality and security that are equivalent to those described in this Agreement. 

  1. Security. 

You agree to hold the Data using state-of-the-art security measures. These measures must at a minimum include organizational safeguards, technological safeguards, and physical safeguards. 

You further agree to comply with all data security and privacy standards established by the U.S. National Institutes of Health under its Genomic Data Sharing (GDS) Policy from time to time, the current version of which is located at NIH Security Best Practices for Controlled-Access Data Subject to the NIH Genomic Data Sharing (GDS) Policy (https://sharing.nih.gov/sites/default/files/flmngr/NIH_Best_Practices_for_Controlled- Access_Data_Subject_to_the_NIH_GDS_Policy.pdf).

  1. Data Breach Notification. 

You agree to provide immediate notice to the Data Provider if a data breach, a breach of confidentiality, or an instance of individual re-identification is known, or is reasonably suspected to have affected the Data.

Such information must be submitted to the Data Provider and to the Principal Investigators of the Bridge2AI Voice Consortium: Yael Bensoussan (yaelbensoussan@usf.edu) and Olivier Elemento (ole2001@med.cornell.edu).

You agree to respect any reasonable measures that the Bridge2AI Consortium might require to mitigate potential harms affecting research participants, and to respond to the data breach in compliance with their legal, ethical, and institutional responsibilities.

  1. Destruction. 

You agree to destroy the Data once it is no longer useful for Your research, upon termination of this Agreement, or immediately upon request of the Data Provider, whichever comes first.

You agree not to retain any copies of the Data, except as required to ensure compliance with applicable legal requirements; to ensure compliance with Data retention or audit requirements; or to preserve study integrity.