erence. Practical considerations, such as the ability to afford insurance that includes genomics coverage, need to be accounted for in these measures.

He also noted that better infrastructure is needed to measure economic-related outcomes in addition to traditional measures. Electronic medical records systems need to anticipate the need for the eventual integration of genomic information so that downstream outcomes can be captured.

BOX 7-1 Research Needs Identified by Individual Speakers

In the final session of the workshop, David Veenstra and Scott Ramsey revised and reorganized the workshop themes that W. Gregory Feero presented (see Chapter 1) into four categories of research needs. This box compiles these needs as Veenstra and Ramsey presented them. These themes should not be seen as recommendations of the workshop, but they are promising concepts that warrant further discussion and possible action.

Evidence—Comparative-Effectiveness Research

  • Need for development of the evidence base—collaboration, infrastructure with clinical trials groups.
  • Need for innovative approaches to the prioritization of comparative-effectiveness research.
  • Determining if and how genomic sequence information modifies health care provision and patient outcomes.
  • Impact of increasing accuracy of sequencing on patient outcomes and costs.
  • Evaluation of proper use of family history to guide medical decision making, integrated into health information technology infrastructure.

Health Economics Methods

  • Need better (quicker) approaches and frameworks for performing health economic evaluations of genomic testing.
  • Evaluation of evidence thresholds for data in hand versus data that must be obtained, and cost of further research.
  • Divergence of economic assessment models in public health, clinical care, and academics.
  • In the setting of a disruptive technology and a zero-sum game/shrinking pool of resources, what/who will be replaced, and how will genomic interventions be funded?


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