In Our DNA SC Research Governance Committee

The Research Governance Committee was developed to support researchers interested in the data created by the In Our DNA SC community health research project.

Core value

The core value of the Research Governance Committee is that responsible research can lead to discoveries that benefit everyone. We strive to make data available for all approved investigators, so that new scientific discoveries can be maximized, and precision medicine can become a reality for everyone.

Goal

The goal of the Research Governance Committee is to assess the objectives of the genomics research requests to ensure that the In Our DNA SC participant data will be leveraged in a responsible way to advance precision medicine research and fuel new insights into human health.

Responsibilities

Its responsibilities are to develop and implement policies for data access, review research proposals, review of potential violations of the Data User Code of Conduct, and recommend sanctions in response to violations.

Governance

The Research Governance Committee is comprised of representatives from MUSC and the community with relevant expertise in such fields as human subjects research, human genomics, ethical/legal/social issues, health disparities research, privacy and security, community health, and data science. Diversity is a critical consideration for committee membership.

Principals

The framework for access to In Our DNA SC data resources is guided by the following principles:

• Participants are research partners.
• Participant privacy must be protected to the greatest extent possible, and their data must be kept secure.
• Participants' data may not be used for research purposes that could harm or stigmatize them.
• Participants must be able to find information on the data that In Our DNA SC researchers have accessed, and for what purpose. Researchers must self-declare the research purpose when accessing In Our DNA SC data. This information must be auditable and lay abstracts made publicly available to the participants.
• Data should be accessible as possible for approved users.
• We should continuously seek to remove unnecessary barriers to accessing In Our DNA SC data.
• For research studies, no group of data users should have privileged access to In Our DNA SC resources based on anything other than data protection criteria; this includes researchers based at institutions participating in the In Our DNA SC project. Users must be both trusted and trustworthy.
• A Data User Code of Conduct defines the appropriate use of In Our DNA SC data.
• We must also have appropriate deterrence and auditing measures in place to promote responsible stewardship of In Our DNA SC data.
• Any user concerned that their research purpose might stigmatize research participants or be inconsistent with the Data User Code of Conduct, might contact InOurDNASC@musc.edu to request guidance from the In Our DNA SC Research Governance Committee.
• If users violate the Data User Code of Conduct, their case will be reviewed by the Research Governance Committee, which will consider appropriate sanctions.