Hospital and Drugmaker Move To Build Vast Database of New Yorkers' DNA (nytimes.com) 15
The Mount Sinai Health System began an effort this week to build a vast database of patient genetic information that can be studied by researchers -- and by a large pharmaceutical company. From a report: The goal is to search for treatments for illnesses ranging from schizophrenia to kidney disease, but the effort to gather genetic information for many patients, collected during routine blood draws, could also raise privacy concerns. The data will be rendered anonymous, and Mount Sinai said it had no intention of sharing it with anyone other than researchers. But consumer or genealogical databases full of genetic information, such as Ancestry.com and GEDmatch, have been used by detectives searching for genetic clues that might help them solve old crimes.
Vast sets of genetic sequences can unlock new insights into many diseases and also pave the way for new treatments, researchers at Mount Sinai say. But the only way to compile those research databases is to first convince huge numbers of people to agree to have their genomes sequenced. Beyond chasing the next breakthrough drug, researchers hope the database, when paired with patient medical records, will provide new insights into how the interplay between genetic and socio-economic factors -- such as poverty or exposure to air pollution -- can affect people's health. The health system hopes to eventually amass a database of genetic sequences for 1 million patients, which would mean the inclusion of roughly one out of every 10 New York City residents. The effort began this week, a hospital spokeswoman, Karin Eskenazi, said.
Vast sets of genetic sequences can unlock new insights into many diseases and also pave the way for new treatments, researchers at Mount Sinai say. But the only way to compile those research databases is to first convince huge numbers of people to agree to have their genomes sequenced. Beyond chasing the next breakthrough drug, researchers hope the database, when paired with patient medical records, will provide new insights into how the interplay between genetic and socio-economic factors -- such as poverty or exposure to air pollution -- can affect people's health. The health system hopes to eventually amass a database of genetic sequences for 1 million patients, which would mean the inclusion of roughly one out of every 10 New York City residents. The effort began this week, a hospital spokeswoman, Karin Eskenazi, said.
Just swab the subway (Score:3)
And you got all.
Re: (Score:2)
This kind of information isn't fully useful unless the DNA is linked to the complete medical history of the individual.
You want to know if there are any similarities among the sequences from patients with Alzheimer's? The DNA they study has to from patients with Alzheimer's, which means the DNA sequences can't be fully anonymized.
Also, from the summary: [They] hope the database, when paired with patient medical records, will provide new insights into how the interplay between genetic and socio-economic fac
HIPPA may say no to this! (Score:2)
HIPPA may say no to this!
Re:HIPPA may say no to this! (Score:4, Informative)
Re: (Score:2)
HIPPA may say no to this!
Isn't a Hippa a female Hippo? :-)
I think you meant HIPAA - Health Information Portability and Accountability Act.
As for the 'Accountability' part, is there truly any 'accountability' when every patient in a big hospital corporation is having DNA collected without consent? AFAIC the answer is "no".
When the title is "Company X and Y to ..." (Score:4, Interesting)
Use it to sell to them... (Score:3)
What a joke, they wont pay for this and cannot do it without everyone cooperating. But once created any drug then has to be purchased by people and they cannot live without the drug company "cooperating" by giving them the life saving drug.
Guess which group gets their part for free? Guess which side has to pay?
Yeah, right... (Score:2)
The data will be rendered anonymous
And the cheque's in the mail, and I won't come in your mouth, and so on. Does anybody really believe this bullshit anymore?
Bull (Score:2)
>"genetic information for many patients, collected during routine blood draws, could also raise privacy concerns."
Ya think? I don't know how this can possibly be allowed without informed consent. I hope that is what they are doing (who knows, the article is behind yet another paywall).
>"The data will be rendered anonymous"
That is utter bull-****. How many times have we heard that nonsense. There is NO WAY they are going to take all the PII off the sample before it is tested (including ANY referenc
Re: (Score:2)
>Archived at: https://archive.ph/ [archive.ph] [archive.ph]
Useful.
And the video linked: https://www.mountsinaimillion.... [mountsinaimillion.org]
They even admit that they are storing the PII linked to the results and that there is a risk of disclosure. Kudos for them for at least admitting it. But there you have it- the data is not anonymous.
Well, which is it? (Score:1)
The only way this data would have been useful in studies is
How mush do they pay? (Score:2)
Health Insurance (Score:2)
Once this database has been created, how long will it take for the health insurance industry to use it to load premiums based on genetic profiling.