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  • - - B  Participant Bill of Rights + + B  Data Sharing Release: Participants +
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    • +
  • +
    + + C  Data Sharing Release: Staff +
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    • +
  • +
    + + D  Sample Release Script +
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    + + E  Post-visit release email +
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    + + F  IRB application template
  • - C  Databrary Privacy Policy + G  Databrary Privacy Policy
  • - D  Terms and Conditions of Use + H  Terms and Conditions of Use +
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    + + I  Participant Bill of Rights
  • - E  Grants + J  Grants
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    Table of contents

  • Changing institutions
  • B Definitions
    • -
  • C Privacy Policy
    • -
  • D Terms and Conditions of Use
    • @@ -735,17 +763,9 @@

    B Definitions

    Authorized Investigator: A person who has permission from an Institution to conduct independent research and who has received authorization from an Institution and from Databrary to access Databrary.

    Authorized Organizational Representative (AOR): A person granted authority by an Institution to sign the Databrary Access Agreement on behalf of the Institution and thereby bind the Institution to the terms of the Databary Access Agreement.

    Institution: An academic, not-for-profit, research, government, or health entity whose employees or students conduct scientific research or educational activities.

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    Volume:

    Session: A type of folder in Databrary

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    Materials: A type of folder in Datatbrary for items such as stimuli, blank survey materials,

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    Volume Sharing Levels:

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    Participant Sharing Levels:

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    C Privacy Policy

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    D Terms and Conditions of Use

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    Materials: A type of folder in Datatbrary for items such as stimuli, blank survey materials.

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    D Terms and Condi
    - - B  Participant Bill of Rights + + B  Data Sharing Release: Participants
    diff --git a/docs/appendices/grants.html b/docs/appendices/grants.html index 4224037..f956ebe 100644 --- a/docs/appendices/grants.html +++ b/docs/appendices/grants.html @@ -7,7 +7,7 @@ -Databrary Guide - Appendix E — Grants +Databrary Guide - Appendix J — Grants + + + + + + + + + + + + + + + + + + + + + + + + + + + + +
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    Appendix F — IRB application template

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    Below is boilerplate language prepared by Databrary that researchers can use to help draft applications to their institutional review board (IRB). This document is intended to help researchers who plan to store and share video data in Databrary prepare IRB materials for approval. Researchers should confirm institution/agency/directorate/program-specific application requirements before submission.

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    Please contact us at contact@databrary.org for further assistance.

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    F.1 Secondary Reuse

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    This project will conduct secondary analyses of participant data obtained from Databrary, an online platform for the storage, sharing, and re-use of video and other research data. Participants’ consent for study participation and release of data were obtained by the original researcher under the oversight of their institutional review board. Because there is no direct contact with participants as a part of this project, the level of additional risk to participants is low.

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    F.2 Primary data collection

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    Data will be handled by the team of researchers approved on the IRB protocols of all Principal Investigators and Co-Investigators. Data are linked to participants by subject ID. However, video data are potentially identifiable because participants’ faces are visible and their names may be heard. With participant consent, study data will be stored on Databrary, a secure web-based video library housed at NYU, allowing permission-based access to coders from all labs comprising the project team. At the end of each lab visit, caregivers will be asked whether they are comfortable: 1) storing their videos and children’s birthdates and other metadata on Databrary, and 2) sharing their data with authorized researchers outside of this protocol who are members of the academic research and clinical communities authorized to access Databrary. If caregivers agree to video sharing, the videos will be made available to authorized researchers as outlined below. If caregivers do not agree, their videos will be accessible only by researchers on the project protocol and not shared with the larger community. The policies for sharing videos and other potentially identifiable data on Databrary have been carefully developed and monitored with the advice of the legal counsel, grants/contracts office, and IRBs of both New York University and The Pennsylvania State University. Currently, more than 360 institutions in the U.S. and around the world have formally approved the Databrary Access Agreement to enable video sharing and reuse. Parents also will be told that they can share portions of data or ask for particular sessions not to be shared while sharing other sessions.

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    F.3 Policies for Databrary access and data sharing.

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    Sensitive or identifiable data shared with Databrary will only be viewable to and downloadable by authorized users who have been granted secure access by Databrary’s administrators. Select data may be made available to the public, but only as determined by the researcher and on the basis of participant permission. Only researchers with Principal Investigator status from institutions with Institutional Review Boards or similar review entities, and researchers affiliated with Principal Investigators and under their supervision, are authorized for access.

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    Authorized users are required to sign a user access agreement that specifies that they will: (1) be responsible for maintaining the confidentiality of the data; (2) abide by ethical principles for treatment of human subjects as mandated by their local Institutional Review Boards; (3) agree not use the data for commercial purposes; and (4) treat data in Databrary with the same high standards of care that they would treat data collected in their own laboratories.

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    Only videos and other identifiable data that have been permissioned for sharing by all the depicted individuals in each recording are made available to the community of authorized Databrary users. In consultation with ethics board officials at New York University and the Pennsylvania State University, Databrary has developed template Sharing Release forms that contributors can add to their IRB protocol. These forms allow researchers to ask participants for permission to share their data.

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    Federal policies do not require re-consenting of minor participants when they reach the age of majority, if re-consenting is impractical or otherwise increases risks to participants (e.g., by requiring researchers to maintain links between identifiable information and collected data for extended time periods).

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    F.4 Policies and provisions for reuse and redistribution

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    Access to videos and metadata will be available for educational and research purposes, subject to participant consent. Such access will be provided using the Databrary web-based application. Materials generated under the project will be disseminated in accordance with the policies of [GRANT-GIVING ORGANIZATION] and participating institutions. Publication of data shall occur during the project, if appropriate, or at the end of the project, consistent with normal scientific practices.

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    F.5 Archiving and preservation of research data

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    Data in Databrary will be preserved indefinitely in a secure data storage facility at New York University (NYU); the facility is managed by the university’s Information Technology Services department. Central IT staff handle storage, network, and backup systems. NYU does routine tape backups that are stored off site and performs regular file fixity checks to monitor the integrity of stored assets. Federal regulations do not require that data be destroyed after a particular time period if they are stored indefinitely in a recognized repository.

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    F.6 Data Security

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    Data and metadata stored in Databrary are subject to the security policies and best practices implemented by NYU. For more information about these policies and services, please visit NYU ITS Computer & Network Security at https://www.nyu.edu/life/information-technology/cybersecurity.html.

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    + + + + + \ No newline at end of file diff --git a/docs/appendices/participant_info.html b/docs/appendices/participant_info.html index ef013c3..c5318af 100644 --- a/docs/appendices/participant_info.html +++ b/docs/appendices/participant_info.html @@ -7,7 +7,7 @@ -Databrary Guide - Appendix B — Participant Bill of Rights +Databrary Guide - Appendix I — Participant Bill of Rights + + + + + + + + + + + + + + + + + + + + + + + + + + + + +
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    Appendix E — Post-visit release email

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    Sometimes researchers cannot obtain release from participants for sharing at the time of the visit. When it is possible to recontact families to re-consent them to ask for their Databrary release, we have created language that can be used to communicate to parents to ask for their release to share video data with Databrary.

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    E.1 Sample email to use for sending the Databrary Release Form to participants after their visit

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    Dear Parent,

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    Previously, you visited [LAB NAME] lab to participate in a study on [RESEARCH AREA]. The data that researchers like me collect from babies and families are incredibly valuable for helping to understand how children learn and develop. There are many different ways that children are learning and developing all the time. They are learning to move, to talk, to interact with people, to understand the world around them, and so much more. Video recordings collected at labs like mine are so rich that one researcher can never study every aspect of a child’s development. There’s huge potential for other child development researchers to use the same videos to learn about many different aspects of how children grow and develop!

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    The information that you provided when you participated is incredibly useful to me and I am truly grateful.

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    I’ve recently joined a new initiative, called Databrary, that aims to make video recordings and data like the data you provided when you participated in my study, accessible to other researchers so that we all can understand more about child development in a more efficient and collaborative way.

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    I now have a new request. I’d like to ask if you are comfortable allowing us to share the data we collected from your session with other researchers just like me. The data would be shared in a secure, online library and would not be available to the public. Only approved researchers that are at a university and have been vouched for by their university officials would be able to access the videos and information shared in the library. The data shared on Databrary will never be used for commercial purposes. Your personal contact information will never be uploaded to Databrary and researchers will never have access to it.

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    If you agree, I’ve attached a permission form that you can sign and email back to me. There are two levels of permissions, the first is to ask if you give permission to share your data through Databrary with other researchers just like me. The second level asks whether you would allow other professors/researchers like me to show short bits of the videos to students or researchers for educational and scientific purposes.

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    It is completely alright if you would not like to share the video from your session. Sharing does not affect your future participation in visits to the lab or the importance of your contribution to science and the field.

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    Kind Regards, [PI NAME/LAB]

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    + + + + + \ No newline at end of file diff --git a/docs/appendices/privacy_policy.html b/docs/appendices/privacy_policy.html index f1c2a3d..9255fa6 100644 --- a/docs/appendices/privacy_policy.html +++ b/docs/appendices/privacy_policy.html @@ -7,7 +7,7 @@ -Databrary Guide - Appendix C — Databrary Privacy Policy +Databrary Guide - Appendix G — Databrary Privacy Policy + + + + + + + + + + + + + + + + + + + + + + + + + + + + +
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    Appendix B — Data Sharing Release: Participants

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    This page provides template data sharing release language and a sample script that researchers may use when seeking informed assent from children. This language is advisory and not mandatory.

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    Databrary Release for [Study Name]

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    Version date: April 29, 2020

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    What we are asking

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    This form requests your permission to share material from this session in a secure, web-based data library called Databrary (Databrary.org). Material from this session may include video/audio recordings, photographs, and images; other information such as age, birth date, sex, ethnicity, education, and self-reported health information; and information supplied by researchers who analyze data from this session. The library allows only authorized researchers to have access to shared information. Data sharing will lead to faster progress in research on human development and behavior.

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    If you agree to share your data, this form also requests permission to allow authorized Databrary researchers to show selected video excerpts and images from recordings of this session for scientific presentations and/or informational and educational purposes, but never for commercial purposes. Giving permission to share your information in Databrary is separate from consenting to participate in a research study. You do not have to give permission to share your information in the library. You can agree to share your data, but not agree to allow researchers to show excerpts and images. Your choices will not affect receipt of payment if offered for participation in this or future studies.

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    Will the information be confidential (kept private)?

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    No information will be included in the data library about how to contact you or your family. No data files will be identified by anyone’s name. However, images and/or voices of people in the recordings may be seen or heard. First and/or last names of people may be spoken aloud. If the study takes place in your home, aspects of your home may be seen or heard. In addition, other information may have been collected about you, your child, or your family in conjunction with this session. Thus, someone might be able to identify you, your child, or other people unintentionally. But the authorized researchers with access to the library have agreed not to reveal the identities of people in the library.

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    Who has access to information in the library?

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    Only authorized researchers will have access to information in the library. Researchers who are granted access must agree to maintain confidentiality and not use information for commercial purposes. Researchers promise to treat information in the library with the same high standards of care that they treat information collected in their own laboratories.

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    How long will information remain in the library?

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    Information in the library will be preserved indefinitely in a secure location so that future researchers can use it. Permission to share can be revoked, but information previously shared cannot be retrieved. To revoke sharing permission, contact NAME OF PI: CONTACT INFORMATION. For questions, contact ethics@databrary.org.

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    Compensation

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    There will be no compensation for sharing information in the library. [IF ORAL OR WRITTEN ASSENT TO SHARE DATA IS NEEDED, USE THE FOLLOWING SCRIPT]

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    +Assent to Share Script +
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    Spoken to child by Experimenter:

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    Earlier, we asked you if you wanted to be in the study and if we could record you while you [describe task]. You said yes. Right now, only the people who work in this room will see the recordings of you or other information about you from this session. Is it okay with you if we put these recordings and other information about you in a library so that other scientists who don’t work in this room can also see it? There are many other scientists who want to learn about how children grow and change, but they can’t because they don’t work in this room.

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    If you say yes, only other scientists who have approval to use the library will see the recordings or other information. Your friends, your teachers, and your classmates won’t be able to see them unless you say it is okay.

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    You can talk this over with your parents before you decide if you want your recordings and other information to be in the library. I will also ask your parents to give their permission for your recordings to be in the library, but even if your parents say “yes” you can still say “no” and decide not to put your recordings in the library. If you don’t want your recordings and other information to be in the library, we don’t have to put them in there. Remember, having your recordings and other information in the library is up to you. No one will be upset if you don’t want the recordings and other information to be in there.

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    You can ask any questions that you have about the library. If you have a question later that you didn’t think of now, you can call me or ask [your parents, teacher, whoever the child may choose] to call me at [telephone number].

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    Would you allow your recordings and other information to be stored in the library?

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    [Participant answers yes or no; only a definite yes may be taken as permission to share.]

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    ORAL ASSENT: Researcher must record response in signature table and initial.

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    WRITTEN ASSENT: If you can read and write, and want to have your recordings and other information stored in the library, I can show you the box to check in the signature table.

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    Would you allow other people besides scientists working in the library to see parts of the recordings?

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    [Participant answers yes or no; only a definite yes may be taken as permission to share.]

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    ORAL ASSENT: Researcher must record response in signature table and initial.

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    WRITTEN ASSENT: If you can read and write, and you want to allow other people to see parts of the recordings, I can show you the box to check in the signature table.

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    Signatures

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    All people in the session must decide whether to provide permission for the following:

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    Permission to share with authorized researchers

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    I give permission to share the material from this session with authorized researchers in a secure data library called Databrary. Authorized researchers may use the materials for research purposes.

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    OR

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    Permission to show excerpts and images

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    I give permission to share data from this session with authorized researchers in a secure library called Databrary. Authorized researchers may use the data for non-commercial research and educational purposes.

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    In addition, I give permission for authorized researchers to show selected excerpts or images from shared recordings in public settings for informational or educational purposes. I understand that at times these presentations may be videotaped or recorded by people who sponsor presentations, and that the recordings may be made available to the public via the internet (e.g., YouTube). In giving my permission, I trust that authorized researchers will use their professional judgment and uphold ethical principles in determining which excerpts or images to present and to which audiences. No one directly associated with this research project or Databrary will make your data directly available to the public.

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    We will give you a copy of this form and the signature page for your records. If you have any questions about the data-sharing library, please email contact@databrary.org. For questions about your rights as a research participant, you may contact [APPROPRIATE CONTACT FOR LOCAL INSTITUTION].

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    Adults

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    I give permission to share with authorized researchers☐ Yes ☐ No
    I give permission to show excerpts and images☐ Yes ☐ No
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    Name ________________________________
    Signature _________________________
    Date _____________________________

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    To be completed by researcher obtaining permission

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    I certify that all participants present have consented or assented above and agreed to release this session to share in Databrary.☐ Yes ☐ No
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    Signature of person who explained this:

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    Name ________________________________
    Signature _________________________
    Date _____________________________

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    Appendix D — Sample Release Script

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    Below is a sample script that can be used to introduce the Databrary Release.

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    Now that you have finished this session, there’s one more thing we want to ask you. The data that researchers collect from babies and families are incredibly valuable for helping scientists to understand how children develop.

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    So we wanted to ask if you are comfortable with allowing us to share the data we collected from this session with other researchers just like the professor who runs this lab/project. The data would be shared in a secure, online library, it’s not available to the public– only researchers that are authorized by their University would be able to access the information in the library.

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    This permission form also asks whether you would allow other professors/ researchers like Dr. [PI’s Name] to show short bits of the videos to students or researchers for educational and scientific purposes. These data will not be used or shown for commercial purposes.

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    Appendix C — Data Sharing Release: Staff

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    This page provides template data sharing release language that researchers may use when seeking permission to share recordings of research staff. This language is advisory and not mandatory.

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    Databrary Staff Release Form

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    Version date: April 29, 2020

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    This form requests your release to share recordings of you collected during the performance of your research duties in a secure, web-based data library called Databrary (databrary.org). The library allows authorized researchers to access shared videos, and potentially to use carefully selected excerpts for scientific presentations and/or informational and educational purposes (based on the level of release given by participants). Authorized researchers will use professional judgment and uphold ethical principles in determining which excerpts and images to present and with which audiences.

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    Signature of lab member:

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    I give permission to share with Databrary any videos where I am recorded in the performance of my research duties. Authorized researchers may use the material for research purposes.

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    In addition, I give permission for authorized researchers to show selected excerpts from shared research videos in public settings for informational or educational purposes. I understand that researchers may use the excerpts in presentations. I also understand that at times these presentations may be videotaped or recorded and made available to the public via the internet (e.g., YouTube). In giving my permission, I trust that authorized researchers will use their professional judgment and uphold ethical principles in determining which excerpts and images to present and with which audiences.

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    Name: ____________________

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    Signature: ____________________ Date:____________________

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