Data Sharing

Genomic Data Sharing is the sharing, for research purposes, of large scale human and non-human genomic data generated from NIH funded research.

Why support Data Sharing?

Genetic Alliance has written to NIH Genomic Data Sharing Policy Team encouraging them to adopt a dynamic consent approach when obtaining consent from human research participants.

• Encouraging widespread data-sharing using a dynamic consent approach focuses on ensuring that participants are appropriately informed about the research to which they are contributing. Dynamic consent is an alternative to broad consent that addresses the changing nature of biomedical research.
• Dynamic consent maintains and upholds participant respect by actively producing research as an ongoing partnership between participants and researchers. To achieve this, dynamic consent uses information technology to place patients and research participants at the center of decision–making. These technologies are ubiquitous in other sectors, but new to biomedical research. It makes what seemed onerous and impossible in the past, possible and simple.
• There are advantages in employing a dynamic consent system.

  1. This participant-centered paradigm of consent recognizes user autonomy and tailors the experience to meet individual needs.

  2. Engaging participants promotes scientific literacy, transparency, and trust in research as participants become more informed about the research carried out on their samples and information. and additional treatment options for genetic diseases.

 

Genetic Alliance's Previous Statements on Data Sharing

 

Sign-on letter to the Response to the NIH Draft Genomic Data Sharing (GDS) Policy, November 20, 2013

Genetic Alliance Response to the NIH Draft Genomic Data Sharing (GDS) Policy, November 20, 2013