02-05-2025
Geisinger's MyCode biobank continues to grow, make impact
A community health initiative that began in 2007, Geisinger's MyCode has grown into a biobank made up of data from more than 350,000 health system patients.
As Geisinger adds more partners under the growing Risant Health through parent company Kaiser Permanente, those databases are not being shared with other health systems but diversifying its data could be useful in the future, officials said.
Geisinger has long used clinical digitization, being one of the first health systems to use electronic health records in 1995, according to Christa Martin, Geisinger's chief scientific officer and principal investigator of the MyCode study.
'Right now we are not sharing or combining any databases,' Martin said in reference to Risant Health, though she also highlighted the value of collaboration to enrich databases.
Two years ago, it was announced that Kaiser was launching a conglomeration of a handful of health systems across the country with similar, value-based medicine at its core. Geisinger was the first system to be part of Risant Health, earning regulatory approval last April. In December, North Carolina-based Cone Health became the second health system to join Risant, whose CEO is former Geisinger boss Dr. Jaewon Ryu.
Martin stressed that eventually expanding its research would be beneficial to patients.
'In rural Pennsylvania, a rather homogeneous patient population, when we are doing studies, we would like to diversify,' Martin said. 'Often, collaborations take place to set up data for studies to have representation to diversify or tailor for the research question being asked.'
MyCode grows
In 2007, health system officials started MyCode Community Health Initiative, a 'systemwide biobank to store blood and other samples for use in research,' according to Geisinger.
In 2013, Geisinger collaborated with Regeneron to document DNA sequencing of MyCode-consented participants.
'This allows us to look at genetic information related to health and disease,' Martin said.
Today, MyCode is made up of more than 350,000 Geisinger patients, including more than 230,000 patients with DNA sequencing.
While Martin could not provide a monetary value for the biobank, she explained it is a value to the health system to have such a resource.
'Having a biobank like this allows us to apply for research grants, which help Geisinger support the research we do with external funding,' Martin said.
Close to $50 million of grant funding supports Geisinger research. 'A lot of that is made possible by having the biobank available to us,' Martin said.
Other 0.1 percent
Susquehanna University Assistant Professor of Biology Antonio Rockwell explained that approximately 99.9 percent of all DNA in humans is identical. The other 0.1 percent results in the variations observed in billions of people globally.
'Large variable regions often lack genes, but they contain key genetic markers that can be used for relatively important investigations such as into an individual's ancestry,' Rockwell said. 'Collectively, studying an individual's genes and non-coding regions of DNA — regions that lack genes — can help that person maintain/predict organ health by contextualizing their health to their family lineage.'
A recent study utilized Geisinger's MyCode Community Health Initiative to determine if genomic screening increases identification of disease risk. Of 175,500 patient-participants from the biobank, the study found genomic screening of 3.4 percent revealed potentially medically actionable results.
Results were disclosed to the more than 5,000 patients, 90 percent of whom were unaware of their genomic risk.
The study concluded the findings demonstrated 'the utility of genomic screening in identifying at-risk individuals.' Officials said the value of MyCode extends beyond determining an individual patient's risks. The data is also shared for broader research efforts.
Data sharing
'Data sharing is really important,' Martin said. 'A lot of diseases are relatively rare. To learn about them, you need to collaborate and share data to have enough information to try and improve health and outcomes.'
According to Rockwell, biobanks enable population-level research.
'Compiling DNA data from thousands of individuals allows researchers to compare regions linked to different pathologies across large groups of people. This creates translational research opportunities in which certain treatments can be created to mitigate or inhibit conditions closely associated with someone's genetic makeup,' Rockwell said. 'In the future, biobanks have the potential to make certain diseases caused by genetic disposition less prominent within our society.'
Since Geisinger's health initiative began nearly 20 years ago, patients have become more willing to share their data, according to Martin.
'Most people who participate in research are doing it to help others. We explain to patients the more we can share data in a responsible way, the more opportunities to learn and to make discoveries,' Martin said. 'People understand that to do good research, you have to share data and we will do everything we can to protect that data.'
Martin further explained how Geisinger protects patient data with a multi-layered approach.
'We follow a lot of the same guidelines they follow for clinical records. We work with an institutional review board to determine who can access the data,' Martin said. 'The MyCode governing board determines that the studies being done are appropriate. Most of the time, the data used for research is de-identified.'
