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Jovialis
01-05-18, 23:16
https://www.youtube.com/watch?time_continue=4&v=B7m5rNkDjHE

Wanted: A million people willing to share their DNA and 10 years of health habits, big and small, for science.


On Sunday, the U.S. government will open nationwide enrollment for an ambitious experiment: If they can build a large enough database comparing the genetics, lifestyles and environments of people from all walks of life, researchers hope to learn why some escape illness and others don't, and better customize ways to prevent and treat disease.

"A national adventure that is going to transform medical care," is how Dr. Francis Collins, director of the National Institutes of Health, describes his agency's All of Us Research Program.

Congress has authorized $1.45 billion over 10 years for the project. It all hinges on whether enough people around the country will sign up, either online or through participating health centers.

There's already interest: More than 25,000 people got early entry to the project over the past year through an invitation-only pilot test run by participating universities and health providers.

WHY STUDY SO MANY?

Most of today's medical care is based on what happened to the average person in short studies of a few hundred or thousand patients with a specific health condition.

And most people who volunteer for those studies are white, leaving questions about the best care for people of different races.

"One-size-fits-all is far from an optimal strategy," Collins said Tuesday in announcing enrollment for All of Us.

The project involves "precision medicine," using traits that make us unique to forecast and treat disease. Learning enough to individualize care requires studying a massive number of participants: The healthy and not-so-healthy, young and old, rural and urban, blue-collar and white-collar—and people of all races and ethnicities.

For now, participants must be at least 18. Next year, the study will open to children, too.

While there are other big "biobanks" of genetic data from at least 100,000 people, the NIH project aims to be the largest and most diverse of its kind. At least half of the participants must be from groups traditionally under-represented in medical research, Collins stressed.

GENES AREN'T THE WHOLE STORY

Sure, what genes you harbor can raise your risk for various diseases. But other factors can increase or reduce some genetic risks.

So first volunteers will share electronic health records and blood samples, and answer periodic questionnaires about their diet, sleep, environmental exposures and other lifestyle factors. They might wear fitness trackers and other sensors.

And later this year they'll start undergoing genetic testing, initially to look for so-called "variants" in DNA that affect disease risk, similar to what some private companies now sell, Collins said. Fully mapping the genetic code is too pricey now for a million people, but that more comprehensive approach eventually will be used with some participants, too.

Among the first lessons Collins hopes to learn is about resilience: Why do some people stay healthy despite smoking or pollution or poor nutrition?

"We have no idea how those people escape those odds," he said.

LEARN YOUR RESULTS

Unlike with most medical studies, participants can choose to see their own test results and share them with their physician long before the study reaches any big-picture conclusions. A caution: There are still many questions about how best to use the results of genetic tests. Still, "we will try to help their doctors sort through what it means," Collins said.

One result that might bring a quick benefit: Genetic variants can signal who is prone to side effects from more than 100 drugs, information that could be used to prescribe a safer drug if only their doctors knew, Collins added.

PROTECTING PRIVACY

The privacy of DNA databases made headlines last week when investigators used a free genealogy website to track down a suspected California serial killer. That's pretty different than the security under which medical DNA must be handled.

NIH said it has taken as many steps as possible to safeguard against would-be hackers. Volunteers' medical data is stripped of identifying information and replaced with a code. Only scientists meeting specific security requirements will be cleared to study the data. NIH also said federal "certificates of confidentiality" prohibit disclosure to law enforcement.

Privacy wasn't a worry for Michelle McNeely, 41, an early participant at Dallas' Baylor Scot & White Health System. She underwent breast cancer treatment in 2016 and considers taking part in All of Us a way to give back.

"If they can use my genes and someone's genes in California and someone's genes in New York to find some common ground, to help discover some cure—they can use my genes all day long," McNeely said.

https://medicalxpress.com/news/2018-05-million-dna-health-habits-science.html

Link to the website:

https://allofus.nih.gov/

Angela
02-05-18, 18:00
https://www.youtube.com/watch?time_continue=4&v=B7m5rNkDjHE

Wanted: A million people willing to share their DNA and 10 years of health habits, big and small, for science.


On Sunday, the U.S. government will open nationwide enrollment for an ambitious experiment: If they can build a large enough database comparing the genetics, lifestyles and environments of people from all walks of life, researchers hope to learn why some escape illness and others don't, and better customize ways to prevent and treat disease.

"A national adventure that is going to transform medical care," is how Dr. Francis Collins, director of the National Institutes of Health, describes his agency's All of Us Research Program.

Congress has authorized $1.45 billion over 10 years for the project. It all hinges on whether enough people around the country will sign up, either online or through participating health centers.

There's already interest: More than 25,000 people got early entry to the project over the past year through an invitation-only pilot test run by participating universities and health providers.

WHY STUDY SO MANY?

Most of today's medical care is based on what happened to the average person in short studies of a few hundred or thousand patients with a specific health condition.

And most people who volunteer for those studies are white, leaving questions about the best care for people of different races.

"One-size-fits-all is far from an optimal strategy," Collins said Tuesday in announcing enrollment for All of Us.

The project involves "precision medicine," using traits that make us unique to forecast and treat disease. Learning enough to individualize care requires studying a massive number of participants: The healthy and not-so-healthy, young and old, rural and urban, blue-collar and white-collar—and people of all races and ethnicities.

For now, participants must be at least 18. Next year, the study will open to children, too.

While there are other big "biobanks" of genetic data from at least 100,000 people, the NIH project aims to be the largest and most diverse of its kind. At least half of the participants must be from groups traditionally under-represented in medical research, Collins stressed.

GENES AREN'T THE WHOLE STORY

Sure, what genes you harbor can raise your risk for various diseases. But other factors can increase or reduce some genetic risks.

So first volunteers will share electronic health records and blood samples, and answer periodic questionnaires about their diet, sleep, environmental exposures and other lifestyle factors. They might wear fitness trackers and other sensors.

And later this year they'll start undergoing genetic testing, initially to look for so-called "variants" in DNA that affect disease risk, similar to what some private companies now sell, Collins said. Fully mapping the genetic code is too pricey now for a million people, but that more comprehensive approach eventually will be used with some participants, too.

Among the first lessons Collins hopes to learn is about resilience: Why do some people stay healthy despite smoking or pollution or poor nutrition?

"We have no idea how those people escape those odds," he said.

LEARN YOUR RESULTS

Unlike with most medical studies, participants can choose to see their own test results and share them with their physician long before the study reaches any big-picture conclusions. A caution: There are still many questions about how best to use the results of genetic tests. Still, "we will try to help their doctors sort through what it means," Collins said.

One result that might bring a quick benefit: Genetic variants can signal who is prone to side effects from more than 100 drugs, information that could be used to prescribe a safer drug if only their doctors knew, Collins added.

PROTECTING PRIVACY

The privacy of DNA databases made headlines last week when investigators used a free genealogy website to track down a suspected California serial killer. That's pretty different than the security under which medical DNA must be handled.

NIH said it has taken as many steps as possible to safeguard against would-be hackers. Volunteers' medical data is stripped of identifying information and replaced with a code. Only scientists meeting specific security requirements will be cleared to study the data. NIH also said federal "certificates of confidentiality" prohibit disclosure to law enforcement.

Privacy wasn't a worry for Michelle McNeely, 41, an early participant at Dallas' Baylor Scot & White Health System. She underwent breast cancer treatment in 2016 and considers taking part in All of Us a way to give back.

"If they can use my genes and someone's genes in California and someone's genes in New York to find some common ground, to help discover some cure—they can use my genes all day long," McNeely said.

https://medicalxpress.com/news/2018-05-million-dna-health-habits-science.html

Link to the website:

https://allofus.nih.gov/

I think this is a fabulous idea. However, they should make sure they have enough diversity, because there are differences by "ethnic" group or "race".

Salento
02-05-18, 18:28
We should find out which Lobbies are pushing for the DNA Database, who will have access to it, and the consequences of abuse to the Public.
I’m not far from the Insurance Capital of the World. I’m sure this Corporations would love getting all that data. Discrimination by DNA!

Jovialis
02-05-18, 18:29
I think this is a fabulous idea. However, they should make sure they have enough diversity, because there are differences by "ethnic" group or "race".

I think so as well. Hopefully, it will be able to yield many breakthroughs in medical science. I like the fact that there's initiatives like this being conducted.

Angela
02-05-18, 19:00
We should find out which Lobbies are pushing for the DNA Database, who will have access to it, and the consequences of abuse to the Public.
I’m not far from the Insurance Capital of the World. I’m sure this Corporations would love getting all that data. Discrimination by DNA!

Goodness, that's being a bit of a conspiracy theorist, don't you think? The benefits greatly outweigh the risks imo. Also, you don't have to volunteer, you know.

Live near Hartford, do you? I have family there, and yes, one works for an insurance company! :)

Jovialis
02-05-18, 19:07
https://www.youtube.com/watch?v=20i7OpFQSTs

Jovialis
02-05-18, 19:16
We should find out which Lobbies are pushing for the DNA Database, who will have access to it, and the consequences of abuse to the Public.
I’m not far from the Insurance Capital of the World. I’m sure this Corporations would love getting all that data. Discrimination by DNA!

Dr. Francis Collins was also involved with the Human Genome Project. Which was also a government initiative. Thankfully it was conducted as well. Considering the gains that were made in the advancement of genetic science, I think the benefits of programs like "All of Us" are very great.

https://en.wikipedia.org/wiki/Human_Genome_Project
https://www.genome.gov/10001772/all-about-the--human-genome-project-hgp/

Salento
02-05-18, 19:27
Goodness, that's being a bit of a conspiracy theorist, don't you think? The benefits greatly outweigh the risks imo. Also, you don't have to volunteer, you know.

Live near Hartford, do you? I have family there, and yes, one works for an insurance company! :)
Now you know why I say that.
We know well how this Corporations operates from the “Inside”.
I’m optimistic too by nature, but by experience I try avoiding being naive. I do give the benefit of the doubt, unless motivations, or events are very clear to my Insight.

Jovialis
02-05-18, 19:29
Public funding of scientific R&D has a significant positive impact on the wider economy, but quantifying the exact impact of research can be difficult to assess. A new report by research firm Battelle Technology Partnership Practice estimates that between 1988 and 2010, federal investment in genomic research generated an economic impact of $796 billion, which is impressive considering that Human Genome Project (HGP) spending between 1990-2003 amounted to $3.8 billion. This figure equates to a return on investment (ROI) of 141:1 (that is, every $1 invested by the U.S. government generated $141 in economic activity). The report was commissioned by Life Technologies Foundation.



According to the study, Economic Impact of the Human Genome ProjectPDF file, the benefits have been widespread and increasing over time. HGP produced 3.8 million job-years of employment, or one job-year for each $1,000 invested. Personal income generated by HGP (wages and benefits) exceeded $244 billion over the time frame, averaging out to $63,700 income per job-year. Since the HGP's completion in 2003, federal investment in genomic research has actually increased. In 2010 dollars, HGP spending by the National Institutes of Health (NIH) and the Department of Energy (DOE) amounted to $5.6 billion; for the seven years following, federal genomics spending totaled $7.2 billion dollars.


In 2010 alone, genomics directly supported more than 51,000 jobs, and indirectly supported more than 310,000 jobs, according to the Battelle study. This created $20 billion in personal income and added $67 billion to the U.S. economy.


The government has even been repaid for its HGP spending. Last year, tax revenues returned to federal, state and local governments nearly equaled the entire 13-year investment in the HGP. Genomics-enabled industry generated more than $3.7 billion in federal taxes and $2.3 billion in U.S. state and local taxes in 2010.


Importantly, the scientific and economic benefits of investing in the HGP are growing, the report finds. The impact on medicine, agriculture, energy and the environment are still in their early stages, with the promise of great things to come.


Another report on the economic impact of NIH funding - An Economic Engine: NIH Research, Employment and the Future of the Medical Innovation SectorPDF file - released on the same day as the Battelle report assessed the economic impact of NIH's 2010 budget on the larger economy. The report finds that the $31.2 billion investment in NIH during 2010 created nearly 488,000 jobs and generated more than $68 billion for the U.S. economy, with benefits in every state in the Union. United for Medical Research, a coalition of universities, patient advocacy groups, and life science and pharmaceutical firms published the study. Moving forward, NIH, along with other federal agencies including the National Science Foundation and the White House Office of Science and Technology Policy is beginning to track the impact of federal science funding on the economy through an initiative called "Science and Technology for America's Reinvestment: Measuring the Effect of Research on Innovation, Competitiveness and Science," or STAR METRICS [starmetrics.nih.gov].

https://www.genome.gov/27544383/calculating-the-economic-impact-of-the-human-genome-project/


Research projects like this also have a very beneficial economic impact as well.

Angela
02-05-18, 20:08
Now you know why I say that.
We know well how this Corporations operates from the “Inside”.
I’m optimistic too by nature, but by experience I try avoiding being naive. I do give the benefit of the doubt, unless motivations, or events are very clear to my Insight.

My dear Salento, there's absolutely nothing in the slightest nefarious about what my cousin Louis does.

Jovialis
02-05-18, 20:40
https://www.youtube.com/watch?v=GDx42mxyAy4

Jovialis
02-05-18, 20:54
Now you know why I say that.
We know well how this Corporations operates from the “Inside”.
I’m optimistic too by nature, but by experience I try avoiding being naive. I do give the benefit of the doubt, unless motivations, or events are very clear to my Insight.

You sent your DNA information to several corporations already with your personal consumer genomics samples.

Salento
02-05-18, 21:15
My dear Salento, there's absolutely nothing in the slightest nefarious about what my cousin Louis does.
This are For Profit biz, with the goal of providing Quarterly Earning to Investors.
CEOs and Bigwigs don’t last very long if the don’t prioritize positive profits.
They come and go all the time.
I’m sure cousin Louis is Great Guy. :)

Salento
02-05-18, 21:27
You sent your DNA information to several corporations already with your personal consumer genomics samples.

That’s our choice, and we have the option to Share, or not our data.
An open source DNA Database in the Millions could results in unpredicted consequences.
As Everything, there are Pro and Con. :)

Jovialis
02-05-18, 21:28
That’s our choice, and we have the option to Share, or not our data.
An open source DNA Database in the Millions could results in unpredicted consequences.
As Everything, there are Pro and Con. :)

Well, this is a volunteer program as well, and they already extensively stressed that they're going to take precautions with privacy.

NIH said it has taken as many steps as possible to safeguard against would-be hackers. Volunteers' medical data is stripped of identifying information and replaced with a code. Only scientists meeting specific security requirements will be cleared to study the data. NIH also said federal "certificates of confidentiality" prohibit disclosure to law enforcement.

I just think it's kind of odd you would be suspicious of this, yet you have given your information out to companies already.

Salento
02-05-18, 21:55
@Jovialis
I wish that was that simple and that all people were nice.
Facebook is the latest example of abuse of Privacy.
They actually Sold the user private Informations. Most didn’t know. (Everybody click Yes without reading). Still not cool.

Angela
02-05-18, 22:07
Oh, for goodness' sakes.This requires effort on the volunteer's part. If you don't want to participate then don't.

I just hope people do join: there are so many illness, debilitating as well as lethal, which it would be a blessing to cure or at least ameliorate. More power to them.

In terms of facebook, I agree. However, you had to be a real moron not to realize you were putting yourself out there by using it. I joined,but basically put nothing on it because my privacy is important to me.

As for genetics companies, I tested with 23andme and sent my data to dienekes, although with some trepidation. I never sent it to eurogenes because I don't trust him any further than I can throw him. I have used gedmatch, which I sort of regret, but the identifying information isn't going to lead anywhere. I certainly have no family trees on there. You have to be cautious.

I will say that I've never met quite so many trusting people as I have met in this community, and that's not a good thing.

Angela
02-05-18, 22:21
Btw, you know some of the most important ways you lose your privacy?

Your phone-

Prepaid public transportation tickets or remote devices for highway toll booths

Navigation system on your car.

Credit cards: incredible what they can tell someone about you.

You want to go undetected? Pay cash wherever possible, use burner phones, take out the GPS.

Still, there are more and more cameras everywhere, although it's not like England.

Salento
02-05-18, 23:02
Our Digital foot print is everywhere already. I guess it’s to late now.
Even here, to some degree. Web servers knows: IP and area, if allowed GPS location, devices, user browsers, Screen resolutions, and more.
To whom has access to this Awesome Amount of data, remember what “Uncle Ben” said:
With Great Power Comes Great Responsibility!
(You know, from Spiderman) lol :)