Preparing For the Era of DNA-Guided Medicine
I have been involved with the field of personalized healthcare since helping to lobby for the Human Genome Project bill in the late 1980s. In 2000, it was great to see the first “working draft” of the genome get published ahead of schedule.
Like any new technology, however, there has been a lag in translating discovery into practical application. Although DNA-guided medicine – getting the right drug to the right patient in the right amount at the right time – is not moving into mainstream medicine as quickly as we would like, we can be optimistic that it will displace traditional trial-and-error approaches with increasing speed. In addition to the ongoing efforts in the diagnostic and biopharmaceutical industries, academia and government, a new piece of legislation should spur the development and adoption of personalized medicine.
The boost may come from The Genomics and Personalized Medicine Act, first introduced in 2006 as S. 3822 by then Senator Obama and now being expanded by Representative Patrick Kennedy in H.R. 6498. The bill acknowledges that promoting the shift toward personalized medicine “will require continued Federal leadership and agency collaboration, expansion and acceleration of genomics research, a capable genomics workforce, incentives to encourage development and collection of data on the analytic and clinical validity and clinical utility of genomic tests and therapies, and improved regulation over the quality of genetic tests, direct-to-consumer advertising of genetic tests, and use of personal genomic information.”
In addition, the bill directs the Director of the Centers for Disease Control and Prevention (CDC) to “expand efforts to educate and increase awareness of the general public about genomics and its applications to improve health, prevent disease and eliminate health disparities.” Yet, it seems that these efforts might be limited to the “ongoing collection of data on the awareness, knowledge and use of genetic tests through public health surveillance systems, and analysis of the impact of such tests on population health.”
I’m afraid that what might be collected is more about what we already know – public understanding of health and science, much less genomics, is low. (Really low. Of those surveyed by the National Science Foundation, about 10 percent knew what a molecule was, about 30 percent could define DNA and about half knew that it takes the earth one year to orbit the sun!) I’d like to see the legislation strengthened by including an initiative to identify gaps in public understanding which would then lead to new efforts in public education.
Why? It’s the only way to develop and sustain trust in the new technology. Despite assurances in the Genetic Information Nondiscrimination Act of 2008, people are wary about sharing their DNA. People need know what personalized medicine can and can’t deliver. Without some greater understanding and trust in the science – and the system of collecting and processing samples – we won’t see appropriate demand, we won’t see appropriate utilization and we won’t see enough people benefiting from the information that resides in their own bodies.
Like any new technology, however, there has been a lag in translating discovery into practical application. Although DNA-guided medicine – getting the right drug to the right patient in the right amount at the right time – is not moving into mainstream medicine as quickly as we would like, we can be optimistic that it will displace traditional trial-and-error approaches with increasing speed. In addition to the ongoing efforts in the diagnostic and biopharmaceutical industries, academia and government, a new piece of legislation should spur the development and adoption of personalized medicine.
The boost may come from The Genomics and Personalized Medicine Act, first introduced in 2006 as S. 3822 by then Senator Obama and now being expanded by Representative Patrick Kennedy in H.R. 6498. The bill acknowledges that promoting the shift toward personalized medicine “will require continued Federal leadership and agency collaboration, expansion and acceleration of genomics research, a capable genomics workforce, incentives to encourage development and collection of data on the analytic and clinical validity and clinical utility of genomic tests and therapies, and improved regulation over the quality of genetic tests, direct-to-consumer advertising of genetic tests, and use of personal genomic information.”
In addition, the bill directs the Director of the Centers for Disease Control and Prevention (CDC) to “expand efforts to educate and increase awareness of the general public about genomics and its applications to improve health, prevent disease and eliminate health disparities.” Yet, it seems that these efforts might be limited to the “ongoing collection of data on the awareness, knowledge and use of genetic tests through public health surveillance systems, and analysis of the impact of such tests on population health.”
I’m afraid that what might be collected is more about what we already know – public understanding of health and science, much less genomics, is low. (Really low. Of those surveyed by the National Science Foundation, about 10 percent knew what a molecule was, about 30 percent could define DNA and about half knew that it takes the earth one year to orbit the sun!) I’d like to see the legislation strengthened by including an initiative to identify gaps in public understanding which would then lead to new efforts in public education.
Why? It’s the only way to develop and sustain trust in the new technology. Despite assurances in the Genetic Information Nondiscrimination Act of 2008, people are wary about sharing their DNA. People need know what personalized medicine can and can’t deliver. Without some greater understanding and trust in the science – and the system of collecting and processing samples – we won’t see appropriate demand, we won’t see appropriate utilization and we won’t see enough people benefiting from the information that resides in their own bodies.
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