Welcome to the NIH Precision Medicine Initiative (PMI) Feedback blog! The PMI will build a comprehensive scientific knowledge base to put precision medicine into practice on a much larger scale. To achieve this goal, the initiative will build a national research cohort study of 1 million or more Americans to propel our understanding of health and disease. Every few weeks we will feature a new topic and welcome the opportunity to know your thoughts.
This first post focuses on the critical research questions that can be uniquely addressed by the cohort to advance precision medicine. Currently, NIH is considering a number of areas where the research using such a cohort may be particularly helpful, including:
- Determining how an individual will respond to a particular drug based on their genes
- Discovering new molecular causes for a variety of rare diseases
- Identifying new ways to predict disease development using an individual’s genes or other physical characteristics
- Identifying new ways to predict disease using information about an individual’s environment or behaviors
- Testing new ways to prevent or treat disease using mobile health technologies, such as smartphones or activity trackers
We’d like your thoughts on the most important scientific questions that the cohort can answer.
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The Feedback site will accept comments on these topics through June 26. Comments received via the Feedback site may be considered by the NIH as it plans the development of the President’s Precision Medicine Initiative and the vision for building the national participant group, but NIH will not respond to comments.
The Precision medicine initiative sponsored by the NIH is the next obvious step with the exponential research evolving in the field of ” omic” spectrum( Genomics, Epigenetics,
Transcriptomics, Proteomics and Metabolomics and the rapidly advancing field of Bio-medical Informatics. By having a collaborative effort of all the stake holders, should enable us to generate a sense of excitement and seek a new horizon in Healthcare.
The enormous amount of data that is generated needs to be harnessed to provide accurate and precise inferences in a timely manner regarding disease processes and patients. The available technological functionality has still not reached the sophistication needed to achieve the full potential in terms of efficiency and effectiveness to predict desired outcomes.
The concept of interoperability and transparency of health information has to be established and adopted in a large scale in the country in a secure and confidential manner. Provisions must be made to improve the literacy state of the providers and the consumers pertaining to medical informatics which may enable them to realize the benefits thereby optimizing the utilization patterns.
This is an exciting initiative with possibilities to prevent illness and improve health, not just cure disease.
It is essential that the full range of US population groups be included in the cohort and that a priority be to include those people at highest risk for disease to avoid precision medicine from increasing health disparities. In addition it is vital to avoid PMI data being used to “blame the victim” or to punish the individuals or groups at highest risk (e.g. differential health insurance rates).
There needs to be DEA rescheduling and further research of classic hallucinogens for treating mental illness, addiction, and psychosomatic illnesses like chronic pain. It’s unethical not to pour funding into researching these chemicals that have benign safety and low addictive profiles.
I would like the genetic variations of cytochrome 450 to be included in the study. More than one half of the population carry genetic differences in CYP 1A2, 2C9, 2C19, and 2D6 pathways that can dramatically alter the effects of many drugs. It is especially important with the CYP2D6 ultra rapid metabolizers and poor metabolizers in regards to proper analgesia as these patients need mostly non-oral routes and higher doses of pain medications to achieve analgesia. The current Standard of Treatment being suggested by medical boards doesn’t work for them. 7 percent of the North American population has this genetic anomaly and it becomes very important for doctors , esp. pain doctors, and hospice to know about this to insure proper analgesia esp. with post surgical pain, cancer care and with intractable pain patients. I keep reading about cancer patients still dying in horrible pain and this should not be happening in 2015 with all these genetic tests available..