for whom. Teutsch showed how different stakeholders need different types of evidence for their respective decision-making processes (see Chapter 2, Figure 2-5). However, in doing this, Terry said, one must avoid dichotomies, or creating an “us against them” culture. Stakeholders must engage in crosstalk to understand where there are synergies or overlaps, and to develop continuums.

In closing, Terry said there is a great deal of stress in the system resulting from the difficulty of evidence development and assessment. A critical step is to develop novel partnerships to elucidate the value of genomics. Industry must work with academia, government, and consumers so that stakeholders understand their overlapping and disparate concerns, and then understand the investment each needs to make for post licensure studies, large cohort studies, registries and biobanks, and other activities that are needed to generate the evidence and address stakeholder concerns.


University of Michigan, School of Public Health

One goal of the workshop was to consider the integrated systems needed for evidence creation. The presentations demonstrated that these integrated systems are up and running in many ways. Some are just starting, some are more mature, and hopefully they will contribute to the development of a learning health care system. The evolution of genomics technologies is running parallel with the advance of other new innovations and, therefore, our systems needs to be adaptive. Kardia recalled Berg’s comment that evidence-based research takes great care and infrastructure to conduct, and yet evidence that actually changes practice is rare. This is an important lesson, Kardia said. Although one strives to be efficient, effective, and streamlined to produce tangible results, as people, our processes are naturally messy. Even in that messiness, if one focuses on the common public good, pursues excellence in all arenas, and trusts in a collective process, then eventually progress will be made. In the past year, there has been progress in terms of the crosstalk among stakeholders, increased awareness of the key issues, and new ideas about how to translate genomics into improved health.

This is an adaptive process, Kardia concluded. There is a balance between doing and thinking. Are people spending enough time in that deeper thinking process, Kardia asked, to find the tipping points where things that seem so slow to catalyze can more quickly come to fruition? Currently, there is a sense of frustration in trying to figure out what to do

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