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Description

There is an unprecedented proliferation of large-scale research initiatives that store human biological material as well as vast troves of genomic and phenotypic data for current and future use. Simultaneously, there has been growing recognition of the need for diversity within genomic data sets. With these shifts in scale and focus, we need to consider novel approaches to informed consent that are both scalable and adaptable. This panel will discuss the use of technology to adapt and enhance the informed consent process, and how the goals of informed consent are accomplished. At the conclusion of this panel, audience members will be able to: (1) compare and contrast various technology-enabled models of informed consent to facilitate genomic research, (2) discuss the potential impact of these new approaches to the informed consent process on the conduct of research, and (3) describe operational and technical challenges of implementation and evaluation of these enhanced informed consent processes.

Learning Objective 1: 1. Discuss technological, process, and ethical challenges and keys to success in designing informed consent processes for genomic research.
2. Describe ethical and technical challenges and keys to success in conducting research consent remotely and/or through online interfaces.

Learning Objective 2: 3. Better understand the comparative advantages and disadvantages, in diverse populations, of using traditional versus mobile, participant-facilitated consent to enroll patient-participants into a precision medicine research project.
4. Better understand the extent to which several forms of technology-enabled consent achieve the goals of informed consent to research.

Authors:

Fuad Abujarad (Presenter)
Yale School of Medicine

Megan Doerr (Presenter)
Sage Bionetworks

Michelle Meyer (Presenter)
Geisinger Health System

Stephanie Kraft (Presenter)
University of Washington School of Medicine

Tiffani Bright (Presenter)
Washington University in St. Louis

Presentation Materials:

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