The Mount Sinai Health System, one of New York City’s largest hospital systems, is set to work with pharmaceutical company Regeneron to gather the genetic information of upwards of one million patients in an effort to search for treatments for a range of illnesses.
According to the New York Times, Mount Sinai has said that the data will be anonymous, and has no intention of sharing the information with anyone other than researchers, but due to consumer and genealogical databases like Ancestry of GEDmatch, where DNA has been used to solve old crimes, some have expressed their concerns in giving this information up.
Mark Gerstein, a professor of Biomedical Informatics at Yale University, told the New York Times that while there is definitely benefits to capturing and studying this genomic information, he said he would not participate himself, and urged others to consider the future consequences of adding their DNA to a database.
"I tend to be a worrier," he said.
"If the datasets leaked some day, the information might be used to discriminate against the children or grandchildren of current participants," Dr. Gerstein said, adding that they might be teased or denied insurance.
Gerstein noted that even if the data is anonymous and secure today, "Securing the information over long periods of time gets much harder."
"The risk of the data being hacked over such a long period of time becomes magnified," he said, noting that Regeneron may not even be in existence in 50 years.
Despite privacy concerns, doctors and researchers hope that the consenting participation in the database could help with the research in treatments for and sources of illnesses like schizophrenia, Alzheimer's, kidney disease, and more.
Participation would be optional, with patients being asked during routine blood draws or other medical appointments or events.
Karin Eskenazi, a hospital spokeswoman, said that the health system hopes to amass a genetic sequence database of 1 million patients, representing roughly one in every 10 New York City residents.
Mount Sinai has previously attempted to create a database of genetic information, slowly building BioMe, a biobank, over the last 15 years. But progress has been slow, with researchers becoming frustrated that the database only has around 50,000 DNA sequences so far.
Those frustrated say it’s because of the drawn out consenting process, with consists of multiple surveys, as well as a lengthy discussion with the patient.
This process has being boiled down though to a short video as well as a signature.
In an effort to avoid costing upwards of tens of millions of dollars, Mount Sinai has partnered with Regeneron, the company known for its Covid-19 monoclonal antibody treatment, to do the actual sequencing work.
In return for the work they put in, the pharmaceutical company will gain access to the genetic sequences as well as partial medical records of participants, though the records shared with Regeneron will be more limited.
Mount Sinai’s project will also not include a complete DNA makeup of a patient, but rather the sequence of around 1 percent of each patient’s genome, called an exome.
Researchers and doctors hope that New York City’s diverse population would make for a more well rounded collection of genetic data.
"The scale and the type of discoveries we’ll all be able to make is quite different than what’s possible up until today with smaller studies," said Dr. Aris Baras, a senior vice president at Regeneron.
"If you’re not of European ancestry, there is less information about variants and genes and you’re not going to get as good a genetic test as a result of that," Baras added.
With the Mount Sinai Health System having seven hospitals in New York City, and seeing around 1.1 million patients a year and handling more than 3 million outpatient visits, Alexander Charney, a professor at the Icahn School of Medicine at Mount Sinai who is overseeing the project, says that 300,000 people so far have given consent to the project.
Charney said that the enrollment rate for such data collection is usually high at around 80 percent, "So the math checks out. We should be able to get to a million."
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