Your opportunity to leave a health legacy for generations of family members to come
Describing precautions established to ensure the safety of volunteer health information Dr. Levy said, “The All of Us Program is governed by the Federal Information Security Management Act, PMI Privacy and Trust Principles and the PMI Data Security Policy Principles and Framework. Teams of experts will conduct security testing and set-up safeguards against the unintended release of data. A database of the information collected will be available to researchers. Volunteer recruits will also have access to the database to make discoveries about their health. Patient navigators will educate and empower volunteers to make informed consent about their involvement. Information covering all facets of the program, i.e., program operations, expectations, benefits/rights, and expected outcomes will be shared.”
“I’m Hispanic, explained,” Dr. Zeno Franco, a clinical psychologist at the Medical College of Wisconsin, and co-prime investigator and assistant director of research for this program. I know that the All Of Us program symbolizes a new day in medical investigation. Genetic testing of family members revealed that 20% of our genome comes from Mexican native Indian tribes. We didn’t understand this information until genetic tests were completed. We’re regaining information about our family that was lost.”
Continuing, he said, “By launching a study of this size and scope, we hope to accelerate our understanding of disease onset and progression, treatment response, and health outcomes. As a result of genetically driven precision medicine for, minorities will be included in future medical advances. If minorities, however, are not part of the sample, consideration for our specific health profiles will not be addressed. This will only compound the level of inequities and outcomes in health care.”
Just as Henry Ford altered the core of America’s economy and lifestyles, the emerging field of precision medicine will also increase the success of medical professionals.
“This research will not focus on specific diseases but will be an asset for researchers working on a variety of important health questions. Data collected will be used to develop measures for risk of multiple diseases based on environmental exposure, genetic considerations, and interactions between the two. Researchers will also be able to — identify causes of individual differences in response to commonly used drugs; reveal biological markers that signal increased or decreased risk of developing common diseases; develop new disease classifications and relationships; and create a platform to enable trials of targeted therapies.
Blood samples requested only once from volunteers will be maintained at Mayo Clinic for analysis. This is part of the way that we keep volunteer identity secure. Given the current immigration dilemma, a concern expressed by the Latino community is being required to submit social security numbers. As a result, social security information is not required as part of the data collected from participants,” explained Dr. Franco.
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