| Session Title: Internal Review Boards (IRB) Place in the Philanthropic and Nonprofit Sector: Are Foundations and the Vulnerable Populations They Serve at Risk? |
| Think Tank Session 814 to be held in Mineral Hall Section E on Saturday, Nov 8, 8:00 AM to 9:30 AM |
| Sponsored by the Non-profit and Foundations Evaluation TIG |
| Presenter(s): |
| Delia Carmen, Annie E Casey Foundation, dcarmen@aecf.org |
| Discussant(s): |
| Delia Carmen, Annie E Casey Foundation, dcarmen@aecf.org |
| Bill Bacon, Packard Foundation, bbacon@packard.org |
| Ben Kerman, Casey Family Services, bkerman@caseyfamilyservices.org |
| Abstract: As a matter of practice, Foundations make major investments in the evaluation of both their own program initiatives as well as to support research in their fields of interest. Such investments are primarily made to large university and research partners with existing IRB credentials that provide needed protections to constituents or human subjects that are included in these efforts. However, as Foundations move to become more and more data-driven and results oriented the demands for performance measures that can only be obtained through original data collection which is increasingly being carried out by non-credentialed grantees as principal investigators, presents a new set of challenges for foundations and the non-profit sector in safeguarding the privacy, confidentiality, rights and privileges of those individuals who participate in and share information for study. This Think-tank session will ask participants to explore and discuss the best ways to incorporate non-government mandated IRB protocols into foundations' grant-giving protocols without becoming onerous, unwieldy barriers to reflective learning and strategic use of data. Key questions to be raised and discussed include: 1. What is deemed to be research in the grant-giving field? Who makes this assessment for program officers? 2. What are the legal implications for a foundation funding research or evaluation and where is the line between a foundation and grantee's responsibility? 3. What can Foundations ethically do with older, existing potentially rich, informative research data that may not have been collected using IRB protocols or under an IRB-approved protocol that does not comply with current standards? 4. How do foundations build the necessary capacity of its non-university/ research partner grantees to develop and sustain the necessary informed consent and confidentiality safeguards into their original data collection activities? |