The Mount Sinai Health System is building a database of patient genetic information that can be used by researchers and a large pharmaceutical company.
Privacy concerns are raised by the effort to gather genetic information for many patients, collected during routine blood draws.
Mount Sinai said it wouldn't share the data with anyone other than researchers. The use of consumer or genealogy databases full of genetic information has helped detectives solve old crimes.
Researchers at Mount Sinai say that large sets of genetic sequence can help uncover new insights into many diseases. The only way to get a lot of people to agree to have their genomes mapped is to convince them.
Beyond chasing the next breakthrough drug, researchers hope the database will provide new insights into how the interplay between genetic and socio- economic factors can affect people's health
Alexander Charney is a professor at the Icahn School of Medicine at Mount Sinai.
One out of every 10 New York City residents would be included in the health system's database of 1 million patients. A hospital spokeswoman said the effort started this week.
Mount Sinai has built a genetics database before. Over the course of the last 15 years, Mount Sinai has been slowly building a bank of biological samples, called BioMe. A lengthy one-on-one discussion with a Mount Sinai employee is one of the reasons why researchers have been frustrated by the slow pace.
The consent process is not happening anymore. Mount Sinai has eliminated the health surveys in favor of watching a short video and giving a signature. It started trying to enroll patients who were getting blood tests as part of their care.
There are a lot of large biobank programs. It would be the first large-scale one to draw participants from New York City. The program could change how many people in New York think about their genetic information.
It will cost tens or hundreds of millions of dollars to sequence a large number of DNA samples. Mount Sinai has a partnership with a pharmaceutical company that will do the actual work on the project. According to Mount Sinai doctors leading the program, the company will get access to the genetic sequence and partial medical records of the participants. Data will be shared with other researchers as well.
According to Mount Sinai, the data shared with Regeneron will be more limited due to the fact that Mount Sinai has access to electronic health records of each patient. Diagnostic reports and vital signs can be accessed by the company.
Large genetic data can be combined with health records to help researchers find rare genes that may be associated with a disease.
Mount Sinai, one of the city's largest hospital systems, is trying to enroll a million patients in a program called the "Mount Sinai Million Health Discoveries Program." The database will be one of the largest in the country, along with one run by the U.S. Department of Veterans Affairs and another run by the National Institutes of Health.
The Mount Sinai project will sequence about 1 percent of each individual's genome, called the exome.
A large biobank in Britain is one of the reasons why Regeneron has studied the DNA of 2 million patients.
The number of patients Mount Sinai hopes to enroll would make it different from other databases.
The scale and the type of discoveries we will all be able to make is different than what has been possible before.
People of European ancestry are more likely to get a genetic test for cancer risk than are people of other races.
If you are not of European ancestry, you won't get as good a genetic test as you would if you are.
More than 3 million outpatient visits to doctor's offices are handled by Mount Sinai Health System in New York City. According to Dr. Charney, the hospital system was drawing 300,000 patients' blood every year and he expected many of them to consent to having their blood used for genetic research.
He said that the enroll rate for such data collection is high. The math looks good. It should be possible to get to a million.
Mark Gerstein is a professor at Yale University. He urged people to consider whether adding their genes to a database might one day affect their children's lives.
He stated that he tends to be a worrier.
He said that our knowledge of the causes of diseases like Alzheimer's would only increase in the future. The data may be used to discriminate against the children or grandchildren of current participants. He said they could be teased or denied insurance.
Even if the data was secure, that could change. He said that securing the information over a long period of time gets more difficult. He said that the risk of the data being hacked became magnified.
Other doctors said genetics offered hope for developing treatments for a range of diseases. Dr. Charney studies scurvy. He used Mount Sinai's database to look for a particular variant of a genes.
Only one of the three patients with that variant had a lifelong psychotic illness. He wondered if the genomes of the other two people were protected by their environment.
Those patients are being called in for more research. They are going to use gene-editing technology to study the effect of various changes to this particular genetic variant. We are asking what is schizophrenia in a dish. Trying to answer that question can help you better understand the disease process.
A 65-year-old man is in Mount Sinai's genetic database. He was healthy until he reached 60, but his heart started to fail quickly. He was found to suffer from cardiac amyloidosis, a condition in which the heart's ability to pump blood is reduced.
He got a new heart. He was happy to give his genome to research. He was involved in genetics research that helped identify a variant in a person's genes. He chose to participate in medical research.
He credits the doctors at Mount Sinai with saving his life when he found his heart was failing.
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