innovation, ethics, and education. Terry said that the direct-to-consumer route is important because patients need to have some sort of relationship with the system and need to be able to make sure that their information and data are being used properly. Robson emphasized that the quality of the information and education provided to consumers along with their genetic test results for inherited mutations are important. Having access to genetic results enables patients to be at the table when value conversations are happening, Terry said.
Direct-to-consumer genetic testing is an experiment that is pushing the envelope, Terry said. Projects like the Personal Genome Project are careful about saying what has been validated and what has not been, but many questions need to be resolved, such as who owns a person’s genome sequence, where it will be stored, and how it will be distributed. Old models to address these questions are not necessarily going to work, Terry said.
Finally, Pfeifer agreed with Terry that everyone is a consumer of health care and they are involved in different areas along the spectrum of the health care system. As taxpayers, people want investments that are effective and provide value. As consumers of health care, they want tests and treatments that are safe and effective. “We’re all in this together,” Pfeifer said. “We are just at different points of the spectrum.”