Anna K. Harding, PhDCollege of Public Health and Human Sciences

Oregon State University

Confederated Tribes of the

Umatilla Indian Reservation

Data-Sharing Issues for Community-Based Research Projects Involving Academic and

Community Partners

Response, Recovery, and Resilience to Oil Spills and Environmental Disasters: Engaging Experts and Communities

January 29, 2013

1

Context of Community-Based Participatory Research (CBPR)

CBPR requires that:o University and community partners determine together the

research aims and design such that it benefits the communityo Community and university partners have developed a trusting

equitable, relationship and shared leadership plano University researchers need to understand the culture of the

communityo Decisions have been made about ownership of data;

conditions for data analyses, including scope of analysis , privacy issues, intellectual property rights

o Potential conflicts around data interpretation and communication of results, including publication are handled upfront

2

o EPA-STAR-J1-R831046 (2003-2007) “Estimating Environmental Exposures for Tribes Practicing Traditional Subsistence Lifestyles”

https://www.box.com/shared/70r3579u5gh7ysdugfv7

o Signed MOU in place

o Several pilot projects

o NIEHS-P42ES016465 (2009-2013) “Tribal-University Collaboration to Address Tribal Exposures to PAHs and Improve Community Health”

3 3

History of Collaboration between OSU and CTUIR

Understanding the Culture of the Community

Building Cultural Capacity at OSU about Tribal research issues

o SRP Engagement Core (with help from NIEHS-funded Environmental Health Sciences Center) sponsored symposium at OSU on issues/perspectives related to research in Tribal communities

o Included Tribal legal issues, research ethics, concepts in indigenous and western science, integration of socio-cultural health indicators into Tribal risk research.

o Featured speakers from CTUIR and Swinomish Tribal Community and tribal legal scholar

o Bi-directional capacity buildingo Presentation and speaker details:

http://oregonstate.edu/superfund/outreachevents

4

o Challenge was to match up needs and goals of CTUIR with that of other projects in SRP

o CTUIR has research and data needs of its own and capacity of its own—likely not the traditional types of “community outreach” materials

CommunityOutreach

--Tribal Values

UniversityScience

Information Transmission ModelCommunity Engagement Models

Dual-Capacity Model

University & Tribal Scientists

Tribal & Academic constituents

EngagementTranslation

Matching Community Goals with Academic Research Goals

6

Material and Data Sharing Agreement

7 27

o Core developed unique agreement signed by all three parties—CTUIR, OSU, PNNL and is

used by all in SRP who are working with CTUIR data. Been adapted for other Tribal projects

and is adaptable to any CBPR.

o Material and Data supplied by CTUIR to OSU or to PNNL, or collected by OSU on behalf of

CTUIR, is and remains the property of CTUIR and shall not be shared with third parties

without the written permission of CTUIR. Participant data shall not be sold or used,

internally or externally, for any purpose not directly related to the scope of work defined in

this agreement without the written permission of CTUIR.

o All publications and presentations developed using materials or data collected under this

Agreement must be presented to Director of the Department of Science and Engineering, CTUIR for review and approval prior to dissemination.

Material and Data Sharing Agreement

8 28

Material and Data Sharing Agreement

8 28

Harding, A.; et al. 2012. Conducting research with tribal communities: Svereignty, ethics, and data-sharing issues. EHP 120(1): 6-10.

Material and Data Sharing Agreements have the following components:

1. General project scope and collaborators.

2. Types of material and data collected: States the types of material and data to be collected and the general collection method.

3. Constraints on material and data use. Stipulates that data cannot be shared with third parties without written permission from owner of data.

4. Data access and security

9

Material and Data Sharing Agreement

4. Risks and benefits of research to the tribal community, for both the individual and the tribal community

5. Agreement on communication of research and mutual review processes

6. Confidentiality agreement regarding use of community data and disclosure of information

7. Termination of agreement and return of data to owners

10

Material and Data Sharing Agreement

IRB

Extra effort at informed consent and identifying potential risks

Governmental & Regulatory context

Sovereignty;Cross-cultural history,

psychology, world view

IPR

Data ownership;

Publication rules

CTUIR 2010

Ethics and Informed Consent

11

13

Conclusions—Key Points

o Communication, transparency, bi-directional exchange of science and culture, authentic and organic partnership development, commitment to the relationship—necessary for community-university partnerships to succeed.

o University researchers engaged in tribal projects should become familiar with issues of sovereignty (with Tribal nations), ethics and informed consent, and intellectual property rights.

o Material and Data Sharing agreements explicitly state agreed-on processes for transparency that benefit community and university partners. Highly recommended for any research partnership between communities and university researchers.

LSU Superfund Research Center personnel Margaret Reams, Community Engagement Core LeaderMaude Walsh, Research Translation Core LeaderTabitha CaleDenise AttawayLSU graduate students

Other OSU Investigators and Engagement Core key personnelKim Anderson and her lab crewBarbara Harper, CTUIR and OSUStuart Harris, CTUIRSandra UesugiNaomi HirschPat Berger

Tribal Advisory committee members, especially Jamie Donatuto (Swinomish)and other Collaborators, including Catherine O’Neill

Funding

P42 ES016465 (PI Williams), Engagement Core Leader Harding)

P30 ES000210 (PI Beckman)

R21 ES020120 (PI Anderson)

13

Acknowledgments