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  • As Geisinger Health System’s MyCode genetics research initiative grows to more than 132,000 participants, the community is seeing results in more ways than one.

    And now the MyCode project is helping serve as a springboard to local participation in a federal initiative that could pump $40 million to $50 million of government funds and bring numerous jobs into central Pennsylvania’s economy in the years ahead.

    The DNA of the first participants in the study that began in 2007 has been read, and 148 people were found to have gene mutations that put them at greater risk for developing certain diseases or conditions such as cancer, heart disease or dangerously high cholesterol.

    One finding of particular note: The research so far suggests that the incidence of familial hypercholesterolemia, a genetic disorder characterized by high cholesterol, is much higher than previously believed. While national data has shown about one in 500 people affected by FH, the Geisinger data is showing about one in 225 to 250, according to Andy Faucett, director of policy and education with Geisinger’s Genomic Medicine Institute in Danville.

    “We’re starting to be able to provide results that will guide research around the world,” Faucett noted.

    Findings like this are significant because they can help improve health care by finding ways to diagnose medical conditions earlier or before they appear and also to help find new treatments or medications to manage these diseases, according to Geisinger.


    For patients, the information can also be “empowering,” said Miranda Hallquist, genetic counselor with the Genomic Medicine Institute in State College.

    “Knowing it is related to genetics frequency empowers them to take steps,” Hallquist said, adding that “we’re changing people’s health care, giving them information they would not otherwise have gotten” as quickly.

    The MyCode initiative includes a biobank that stores blood and saliva samples from Geisinger patients who have agreed to participate. Geisinger has already far surpassed its initial goal of 100,000 participants and has set its next goal at 250,000.

    Consenters at various Geisinger facilities approach patents to see if they want to participate in the program, and to answer questions they might have. Patients can also sign up at www.mygeisinger.org. Participation is relatively simple, generally involving donation of an extra 2 tablespoons of blood at the patient’s next blood draw. Participants also allow Geisinger to access information in their medical records.

    About 90 percent of patients asked have agreed to participate, according to Geisinger.

    “It surprised me how altruistic people in central Pennsylvania are,” Faucett said. He noted that while the program is open to all ages, many participants are older because that age group tends to go to the doctor more.

    “People are more concerned not so much about the information for themselves, but for their children and grandchildren,” he said.

    Currently Geisinger has between 1 million and 1.4 million active patients, “so we have talked with about 10 percent of the patient population,” Faucett said. His goal is that every patient have the opportunity to participate.


    Of those who provide samples, about 4 percent will hear back because they have genetic markers that make them susceptible to a certain disease. Other participants do not hear back because nothing of concern was found in their DNA.

    For those who are found to be at increased risk, meetings are scheduled to discuss the results and appropriate next steps, Hallquist said.

    “We talk about what the result means for them and their family members,” she said.

    Part of that education process, Hallquist said, means helping patients sort through the “genetics gobbledygook.”

    For the 96 percent of participants whose genetics don’t show increased risks, their data is still “imperative” to the research project, Hallquist said.

    The turnaround time from MyCode samples to results can take a year or more. Hallquist said that while that process should get faster as more staff are added, she emphasized that MyCode is not a substitute for clinical testing for those with health concerns.


    Geisinger’s experience with the MyCode project helped it become one of four new health care provider organizations selected to participate in the federal Precision Medicine Initiative Cohort Program to help build a nationwide million-person study.

    The PMI was launched by then President Barack Obama in 2015 “to bring us closer to curing diseases like cancer and diabetes, and to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

    Ultimately depending on final funding from the National Institutes of Health, the program could bring $40 million to $50 million to Geisinger over the course of five years, Faucett said. These funds will be used to recruit participants, providing multiple jobs throughout the Geisinger footprint. NIH provides funding on a yearly basis, he said.

    Participants in the MyCode initiative will be approached about joining the PMI study as well, but it will ask more of patients than MyCode does, Faucett and Hallquist said.

    Central Pennsylvania is fertile ground for such studies.

    It is a “very stable community, with patients willing to participate,” Faucett said.

    Additionally Geisinger officials noted that its electronic health records system goes back to the late 1990s.

    “For many families, we have three generations of patient records,” Hallquist said. This includes an average of 14 years of health information for MyCode participants.

    MyCode has allowed Geisinger to recruit “amazing scientists,” Faucett said. “The types of research we are doing is growing every day.”

    Faucett sees a future in which physicians will order a patient’s genetic profile and use it to help guide care over a lifetime.

    It was the MyCode project that brought Hallquist to Geisinger.

    “Precision medicine is the future,” she said, while noting that healthy lifestyle choices are still as important as ever. “Being able to look at someone’s DNA to help determine what their risks are, it’s spectacular that it’s moving in that direction.”


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