5:10 - 5:30 pmSaturday, September 17
LK 101
The Connected and Open Research Ethics (CORE) Initiative: Shaping ethics in the digital age
LK 101
The Connected and Open Research Ethics (CORE) Initiative: Shaping ethics in the digital age
Assistant Professor, Behavioral Medicine/School of Medicine, UC San Diego
Background: Mobile Imaging, pervasive Sensing, Social-media and location Tracking (MISST) data collection methods introduce new ethical and regulatory challenges for researchers and Institutional Review... Read more

Description

Background: Mobile Imaging, pervasive Sensing, Social-media and location Tracking (MISST) data collection methods introduce new ethical and regulatory challenges for researchers and Institutional Review Boards (IRBs). The Connected and Open Research Ethics (CORE) project, led by an interdisciplinary research team, is working with stakeholders, including IRBs and scientists, to address these challenges. The CORE initiative involves development and testing of an interactive web-based platform where stakeholders can engage in discussion via the CORE Forum and exchange dynamic “best practices” on the CORE Resource Library. The CORE is a global community where digital health stakeholders work collaboratively to promote the ethical design and timely review of research protocols involving MISST technologies.

Methods: The CORE platform is being designed and tested using a participatory approach involving key stakeholders. Formative research, involving focus groups and key informant interviews, was initiated in fall 2015 to identify features and functionality of the CORE platform. The CORE Network members are now contributing research protocol and informed consent language to populate the CORE Resource Library.

Results: Audio recordings of focus groups and interviews with stakeholders were transcribed and analyzed. Results indicate a growing demand for guidance and expertise to evaluate the ethical and regulatory dimensions of research protocols using MISST technologies. Frequently reported challenges include: unfamiliarity with MISST technologies, difficulties determining potential risks and benefits to research subjects, identifying appropriate data management strategies and consideration of bystander rights. Stakeholders consistently voice support of the CORE concept as a resource to aid in the IRB review process. Barriers focus primarily on concerns of sharing information and ideals about ethical standards that are not empirically informed.

Discussion: We anticipate the CORE Platform will facilitate stakeholder dialogue via its growing Network Q&A Forum and Resource Library. The CORE is a first step in facilitating the ethical design and appropriate review of research using MISST technologies.

Acknowledgements: The CORE project is supported by the Robert Wood Johnson Foundation (Principal Investigator: Nebeker, #72876, 2015-2017) and the UC San Diego Chancellor’s Interdisciplinary Collaboratory Fellowship program. CORE team members include: Nadir Weibel, Cinnamon Bloss, Rasheed Al Kotob, Vincent Chan, Sarah Dunseath, Rebeca Giacinto, John Harlow, Araceli Lopez-Arenas and Michelle Takemoto

Camille Nebeker is an Assistant Professor of
Behavioral Medicine at UC San Diego and founder/director of the Collaborative
for Advancing Professional and Research Integrity (CAPRI). CAPRI programs
include the Building Research Integrity and Capacity (BRIC) and Connected and
Open Research Ethics (CORE) initiatives. Dr. Nebeker’s research is supported by
federal sources as well as the Robert Wood Johnson Foundation.

Contact Us

We're not around right now. But you can send us an email and we'll get back to you, asap.

Not readable? Change text. captcha txt

Start typing and press Enter to search