collapse

Author Topic: they know what you are doing  (Read 274013 times)

Offline ArMaP

  • Administrator
  • Hero Member
  • *****
  • Posts: 13171
  • Gold 770
Re: they know what you are doing
« Reply #840 on: April 05, 2018, 04:48:12 am »
Google may read the files BUT if you block OUTGOING apps   nothing will happen
If you block Chrome from sending information then you cannot use it to access web sites, as it will not be able to initiate outgoing communications.
I suppose that's why that cleanup tool uses the Chrome process, as they are sure that is already allowed to send data to the Internet.

Offline space otter

  • Hero Member
  • *****
  • Posts: 5659
  • Gold 691
Re: they know what you are doing
« Reply #841 on: April 15, 2018, 07:39:45 am »

holy heck..id'd from a photo on line and then arrested..WOW
 you hafta watch the vid at the link..really
they do know what you are doing


http://www.bbc.com/news/uk-wales-43711477

WhatsApp photo drug dealer caught by 'groundbreaking' work
By Chris Wood
BBC News
6 hours ago

A pioneering fingerprint technique used to convict a drugs gang from a WhatsApp message "is the future" of how police approach evidence to catch criminals.

An image of a man holding ecstasy tablets in his palm was found on the mobile of someone arrested in Bridgend.

It was sent to South Wales Police's scientific support unit and helped to secure 11 convictions.

These are believed to be the first convictions in Wales from fingerprints taken from a photograph.

The unit's Dave Thomas described its use as "groundbreaking" and said officers are now looking more closely at photographs on phones seized for potential evidence.

'Ecstasy pills for sale' in WhatsApp message
Teens found selling drugs on Snapchat and Instagram
How drugs are offered on Instagram
He said: "It is an old-fashioned technique [fingerprinting], not new.

"Ultimately, beyond everything else, we took a phone and looked at everything on it - we knew it had a hand with drugs on it.

"These guys [the dealers] are using the technology not to get caught and we need to keep up with advancements."

The photograph came to light after a tip-off drugs were being sold from a house in the Kenfig Hill area of Bridgend.

pic of folks
It was raided and large quantities of Gorilla Glue - a type of cannabis - was recovered.

Mr Thomas praised the officer that spotted a photograph among a stream of WhatsApp messages going back months as potentially carrying significant evidence.

"It had a number of texts such as 'what do you want to buy?' on it," he said.

"There was then the photograph of the hand holding pills that seemed like it was sent to potential customers saying 'these are my wares, I'm selling these'.

"But he was not thinking it showed part of his hand and there was potentially a fingerprint."

The scientific support unit - a joint venture between the Gwent and south Wales forces, based in Bridgend - was able to scan the image into its system.

However, there were just parts of the middle and bottom of a finger visible - records only keep the top part.

This meant the image did not find a match on national databases.

pic of drugs
Drug dealer Elliott Morris sent this photograph out on a Whatsapp message to potential customers in Bridgend




However, other evidence meant officers had an idea who they believed was behind the drugs operation.

"While the scale and quality of the photograph proved a challenge, the small bits were enough to prove he was the dealer," added Mr Thomas.

"It has now opened the floodgates and when there is part of a hand on a photograph, officers are sending them in."

He believes it is the first time someone's fingerprint has been identified by a photograph in Wales and shows the potential of a forensic unit with a small piece of evidence.

Mr Thomas pointed to how about 80% of people now have mobile phones and use them to record incidents such as fights and car crashes.

"We can download and enhance (footage)," he said.

"These are all advancements in the digital world - they provide lots of questions we need to provide answers for."

Making greater use of social media messages is just one area being developed.

"We want to be in a position where there is a burglary at 20:30, we can scan evidence and by 20:45 be waiting at the offender's front door and arrest them arriving home with the swag," he added.

"That will work through remote transmission - scanning evidence at the scene and sending it back quickly for a match.

"It's the future. We are not there yet but it could significantly enhance the ability of the local bobbies to arrest people very quickly."


Offline space otter

  • Hero Member
  • *****
  • Posts: 5659
  • Gold 691
Re: they know what you are doing
« Reply #842 on: April 15, 2018, 03:22:20 pm »


if you really want to get pissed about your info being used by farce book when you never joined..read this
AHHHHHHHHHHHHHHHHHHHHHHHHHHHH >:(


https://www.huffingtonpost.com/entry/facebook-tracking-of-non-users-sparks-broader-privacy-concerns_us_5ad34f10e4b016a07e9d5871

TECH 04/15/2018 09:19 am ET Updated 6 hours ago
Facebook’s Tracking Of Non-Users Sparks Broader Privacy Concerns
CEO Mark Zuckerberg said that, for security reasons, the company collects “data of people who have not signed up for Facebook.”

By David Ingram

SAN FRANCISCO (Reuters) - Concern about Facebook Inc’s respect for data privacy is widening to include the information it collects about non-users, after Chief Executive Mark Zuckerberg said the world’s largest social network tracks people whether they have accounts or not.

Privacy concerns have swamped Facebook since it acknowledged last month that information about millions of users wrongly ended up in the hands of political consultancy Cambridge Analytica, a firm that has counted U.S. President Donald Trump’s 2016 electoral campaign among its clients.

Zuckerberg said on Wednesday under questioning by U.S. Representative Ben Luján that, for security reasons, Facebook also collects “data of people who have not signed up for Facebook.”

Lawmakers and privacy advocates immediately protested the practice, with many saying Facebook needed to develop a way for non-users to find out what the company knows about them.

“We’ve got to fix that,” Representative Luján, a Democrat, told Zuckerberg, calling for such disclosure, a move that would have unclear effects on the company’s ability to target ads. Zuckerberg did not respond. On Friday Facebook said it had no plans to build such a tool.

Critics said that Zuckerberg has not said enough about the extent and use of the data. “It’s not clear what Facebook is doing with that information,” said Chris Calabrese, vice president for policy at the Center for Democracy & Technology, a Washington advocacy group.

COOKIES EVERYWHERE
Facebook gets some data on non-users from people on its network, such as when a user uploads email addresses of friends. Other information comes from “cookies,” small files stored via a browser and used by Facebook and others to track people on the internet, sometimes to target them with ads.

“This kind of data collection is fundamental to how the internet works,” Facebook said in a statement to Reuters.

Asked if people could opt out, Facebook added, “There are basic things you can do to limit the use of this information for advertising, like using browser or device settings to delete cookies. This would apply to other services beyond Facebook because, as mentioned, it is standard to how the internet works.”

Facebook often installs cookies on non-users’ browsers if they visit sites with Facebook”like” and “share” buttons, whether or not a person pushes a button. Facebook said it uses browsing data to create analytics reports, including about traffic to a site.

The company said it does not use the data to target ads, except those inviting people to join Facebook.

TARGETING FACEBOOK
Advocates and lawmakers say they are singling out Facebook because of its size, rivaled outside China only by Alphabet Inc’s Google, and because they allege Zuckerberg was not forthcoming about the extent and reasons for the tracking.

“He’s either deliberately misunderstanding some of the questions, or he’s not clear about what’s actually happening inside Facebook’s operation,” said Daniel Kahn Gillmor, a senior staff technologist at the American Civil Liberties Union.

Zuckerberg, for instance, said the collection was done for security purposes, without explaining further or saying whether it was also used for measurement or analytics, Gillmor said, adding that Facebook had a business incentive to use the non-user data to target ads.

Facebook declined to comment on why Zuckerberg referred to security only.

Gillmor said Facebook could build databases on non-users by combining web browsing history with uploaded contacts. Facebook said on Friday that it does not do so.

The ACLU is pushing U.S. lawmakers to enact broad privacy legislation including a requirement for consent prior to data collection.

The first regulatory challenge to Facebook’s practices for non-users may come next month when a new European Union law, known as the General Data Protection Regulation (GDPR), takes effect and requires notice and consent prior to data collection.

At a minimum, “Facebook is going to have to think about ways to structure their technology to give that proper notice,” said Woodrow Hartzog, a Northeastern University professor of law and computer science.

Facebook said in its statement on Friday, “Our products and services comply with applicable law and will comply with GDPR.”

The social network would be wise to recognize at least a right to know, said Michael Froomkin, a University of Miami law professor.

“If I’m not a Facebook user, I ought to have a right to know what data Facebook has about me,” Froomkin said.

(Reporting by David Ingram; Editing by Peter Henderson and Richard Chang)


really ready to toss this machine..

Offline ArMaP

  • Administrator
  • Hero Member
  • *****
  • Posts: 13171
  • Gold 770
Re: they know what you are doing
« Reply #843 on: April 15, 2018, 04:05:07 pm »
The first regulatory challenge to Facebook’s practices for non-users may come next month when a new European Union law, known as the General Data Protection Regulation (GDPR), takes effect and requires notice and consent prior to data collection.
Not only that, it says that those doing data processing (collection is also considered processing) should say, in clear language, what they use the data for, and that any "data holder" (in this case anyone that visits Facebook) has the right of knowing what data about them is stored and ask for the removal of the data. They should also say who uses that data besides facebook. If the data is used for something not shown in the consent form then they may be penalised. The GDPR also has penalties for data breaches, and for any serious breach of the GDPR they have fines that may go up to 20,000,000 Euros or 4% of the worldwide annual turnover, whichever is higher.

If this Cambridge Analytica case had happened after May 25th facebook could be in serious trouble with the EU.

Offline ArMaP

  • Administrator
  • Hero Member
  • *****
  • Posts: 13171
  • Gold 770
Re: they know what you are doing
« Reply #844 on: April 15, 2018, 04:08:10 pm »
But one thing is certain, facebook is not the only one doing that, just look at the right side of this forum's pages and you will see two other cases, Amazon and Walmart. Those images are hosted on their own servers, so they get information about who visits these pages.

Offline space otter

  • Hero Member
  • *****
  • Posts: 5659
  • Gold 691
Re: they know what you are doing
« Reply #845 on: April 15, 2018, 05:18:49 pm »


yeah
 this is one of the very few places i stop at where NOT SECURE in right in the address

Offline ArMaP

  • Administrator
  • Hero Member
  • *****
  • Posts: 13171
  • Gold 770
Re: they know what you are doing
« Reply #846 on: April 15, 2018, 05:44:17 pm »

yeah
 this is one of the very few places i stop at where NOT SECURE in right in the address
That "not secure" means only that the connection is not established with encryption, so it's relatively easy to intercept the communications between the server and the clients.

Offline space otter

  • Hero Member
  • *****
  • Posts: 5659
  • Gold 691
Re: they know what you are doing
« Reply #847 on: April 28, 2018, 08:37:50 pm »


do you really want to join the dna craze?..at least this time it caught a rapist and killer

entire article at link

http://www.bbc.com/news/world-us-canada-43915187



Janelle Cruz had been dead for a decade when it was discovered that the DNA sample from her body matched DNA from the Harringtons and Manuela Witthuhn. Over time the DNA profile also matched with the Domino and Sanchez murders, and the Smiths, as well as to two Contra Costa County rape cases from the late 1970s.

Although law enforcement has had a DNA profile for the Golden State Killer for decades now, a matching profile was never found in any national DNA database, meaning the man had never been caught for a subsequent crime where his DNA would have been collected.

Eventually a task force joined all the affected jurisdictions together with the FBI to try to collaborate, offer new reward money and send out a call for tips to the public. Although journalists and armchair detectives have been fascinated by the case and offered thousands of tips over the years, no suspect has ever matched the DNA profile, until two weeks ago.

..

The break came after Paul Holes, a retired investigator with the Contra Costa District Attorney's Office and long time investigator on the case, searched a free, do-it-yourself genealogy website called GEDmatch.

According to the Sacramento Bee, the site is a place for people to find long lost relatives, and has a database of 800,000 DNA profiles.

...............................

https://www.nytimes.com/2018/04/27/health/dna-privacy-golden-state-killer-genealogy.html

The Golden State KillerIs Tracked Througha Thicket of DNA,
and Experts Shudder
The arrest of a suspect has setoff alarms among some scientists
and ethicists worried thatconsumer DNA may be widely
accessed by law enforcement.

By GINA KOLATA and HEATHER MURPHYAPRIL 27, 2018

...................

http://www.chicagotribune.com/news/nationworld/ct-golden-state-killer-dna-implications-20180428-story.html

A genealogy site led police to the Golden State Killer. Who else can tap into this DNA 'treasure trove'?

....................

DNA used in hunt for Golden State Killer previously led to wrong man
https://www.nbcnews.com/.../dna-used-hunt-golden-state-killer-previously-led-wrong-...
8 hours ago - An Oregon officer working at the request of California investigators persuaded a judge in to order a 73- year-old man in a nursing home to provide a DNA sample.

..........................

How DNA from family members helped solve the 'Golden State Killer ...
abcnews.go.com/US/dna-family-members-helped-solved-golden-state-killer/story?id...
13 hours ago - It was a long process to connect the DNA of the unknown "Golden State Killer" to the suspected serial killer and rapist, identified this week as 72-year-old former police officer Joseph DeAngelo. Interested in 'Golden State Killer' Case? Add 'Golden State Killer' Case as an interest to stay up to date on the



Offline space otter

  • Hero Member
  • *****
  • Posts: 5659
  • Gold 691
Re: they know what you are doing
« Reply #848 on: May 08, 2018, 06:10:40 am »

hey you can help them out.. volunteer here...yikes.!!!



https://nypost.com/2018/05/02/us-seeking-1-million-volunteers-for-massive-study-of-dna-health-habits/

entire article

US seeking 1M volunteers for massive study of DNA, health habits
By Associated Press May 2, 2018 | 2:37am | Updated

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

On Sunday, the US 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.

Modal Trigger
Dr. Francis Collins, director of the National Institutes of HealthReuters
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.

.......................

local paper

http://triblive.com/news/healthnow/13607679-74/wanted-volunteers-for-large-study-of-dna-health-habits

The University of Pittsburgh and UPMC will partner with 100 organizations across the country to participate in the National Institutes of Health's research program called All of Us that launches nationwide Sunday.

The goal of the program is to enroll 1 million volunteers to donate biological samples and share health care information to help researchers understand illnesses and develop treatments.

The program, funded by NIH, is part of the Precision Medicine Initiative started by former President Obama in 2015.

“Welcome to the future of health care,” said Dr. Steven Reis, Pitt's associate vice chancellor for clinical research, health sciences, and professor of medicine and emergency medicine.

The NIH started a pilot version of the program last year. Project participants include the University of California system, as well as participating organizations in New York, Boston and Detroit, Reis said. All data will be used solely for research purposes.
Both Pitt and UPMC have 5,000 participants, a number they hope will grow to 120,000. They also have received $60 million from the NIH to fund their share. Overall, the NIH will invest $500 million in the program, which is expected to continue for five — possibly longer — years. The program is currently open to only UPMC patients. It will be open to everyone in about a month, Reis said.

Precision medicine is a new approach to treatment of disease that takes people's lifestyles, environments and biological makeup, including genes, into account.

“This is something that is needed,” said Andrew Brown, a researcher at Pitt's School of Dental Medicine, who was part of the local beta All of Us.

Participants, usually recruited by their primary care doctor, are asked to fill out a survey that looks at overall health habits, as well as where they live and work. Their measurements and blood pressure are taken. They also provide a urine sample.

“It was very easy,” said Janice Yasko, 77, of Evans City. “Being an old lady, I think about these things.”

For Errika Hager, 29, a Plum mother of two, becoming part of the pilot portion of All of Us, was more personal. She developed gestational diabetes during one of her pregnancies. Plus, her grandmother had breast cancer and another close relative developed amyotrophic lateral sclerosis, or ALS.

“For me, I also wanted to raise awareness of the African American community,” she said.

The national research portal will open in the first half of next year. Currently, anyone older than 18 can participate. The NIH is developing a similar data base for children.

Suzanne Elliott is a Tribune-Review staff writer.
« Last Edit: May 08, 2018, 06:14:16 am by space otter »

Offline The Seeker

  • grouchy, old, but inquisitive...
  • Administrator
  • Hero Member
  • *****
  • Posts: 3757
  • Gold 426
  • The one-armed Bandit
Re: they know what you are doing
« Reply #849 on: May 08, 2018, 03:55:44 pm »
No. They don't need my dna, don't need to know my habits; don't know what they are looking for but they can look elsewhere...

my names bennent and I aint in it
Look closely: See clearly: Think deeply; and Choose wisely...
Trolls are crunchy and good with ketchup...
Seekers Domain

Offline zorgon

  • Administrator
  • Hero Member
  • *****
  • Posts: 21309
  • Gold 903
Re: they know what you are doing
« Reply #850 on: May 08, 2018, 04:25:24 pm »
Ach Ja!  Gather zee information for zee study of creating zee Master Race   :o

I think Uncle Adolf tried this before, nicht wahr?

 ::)

 8)
« Last Edit: May 08, 2018, 04:26:56 pm by zorgon »

Offline space otter

  • Hero Member
  • *****
  • Posts: 5659
  • Gold 691
Re: they know what you are doing
« Reply #851 on: May 09, 2018, 02:05:04 pm »


well what a lot of folks don't know is that  babies  are already in the database for dna , as well as blood type and fingerprints and probably more we don't know about
what most parents don't know is that they can opt out..but it's ususally just done

i guess with this health thing they want some of the older folks...
i wonder if the undertakers keep samples now

sigh




Quote
Newborn screening began in the 1960s when scientist Robert Guthrie, MD, PhD, developed a blood test that could detect whether newborns had the metabolic disorder, phenylketonuria (PKU).Since then, scientists have developed more tests to screen newborns for a variety of severe conditions.

Quote
Newborn screening tests check for rare but serious conditions in babies just after birth. All states require certain screening tests to be performed on newborns, even if they appear healthy. These generally include a variety of blood tests and a hearing test. (Some states now do heart defect screenings as well.)


http://genes-r-us.uthscsa.edu/resources/newborn/overview.htm



http://www.babysfirsttest.org/newborn-screening/screening-101



DNA Gene Sequencing and Newborn Screening – Where are We and ...
https://www.babygenes.net/.../dna-gene-sequencing-and-newborn-screening-where-ar...
Jan 25, 2017 - The benefit is that state newborn screening programs provide more than just a newborn screening test. ... Currently, DNA sequencing is used only as a second tier test for certain diseases (cystic fibrosis) or as a confirmatory test for a positive newborn screen, which is a costly and limited use of this technology.

Offline The Seeker

  • grouchy, old, but inquisitive...
  • Administrator
  • Hero Member
  • *****
  • Posts: 3757
  • Gold 426
  • The one-armed Bandit
Re: they know what you are doing
« Reply #852 on: May 09, 2018, 02:12:51 pm »
That is more of a modern deal with the babies; an old fart boomer like me popped out before any of that got started  :P
Look closely: See clearly: Think deeply; and Choose wisely...
Trolls are crunchy and good with ketchup...
Seekers Domain

Offline Shasta56

  • The Roundtable
  • Hero Member
  • *****
  • Posts: 1611
  • Gold 148
Re: they know what you are doing
« Reply #853 on: May 09, 2018, 02:36:10 pm »
Doctors can prescribe safer drugs by listening to patient's. They can also quit prescribing whatever the pharma representative displays as the flavor of the week.
Daughter of Sekhmet

Offline space otter

  • Hero Member
  • *****
  • Posts: 5659
  • Gold 691
Re: they know what you are doing
« Reply #854 on: May 13, 2018, 05:51:24 am »

entire article copied here



https://www.msn.com/en-us/news/us/dna-of-every-baby-born-in-california-is-stored-who-has-access-to-it/ar-AAxbj8F?li=BBnb7Kz

DNA of every baby born in California is stored.
 Who has access to it?

8 hrs ago

SAN FRANCISCO -- You probably know where your Social Security card, birth certificate and other sensitive information is being stored, but what about your genetic material? If you or your child was born in California after 1983, your DNA is likely being stored by the government, may be available to law enforcement and may even be in the hands of outside researchers, CBS San Francisco's Julie Watts reports.

Like many states, California collects bio-samples from every child born in the state. The material is then stored indefinitely in a state-run biobank, where it may be purchased for outside research.

State law requires that parents are informed of their right to request the child's sample be destroyed, but the state does not confirm parents actually get that information before storing or selling their child's DNA.

KPIX has learned that most parents are not getting the required notification. We've also discovered the DNA may be used for more than just research.

In light of the Cambridge Analytica-Facebook scandal and the use of unidentified DNA to catch the Golden State Killer suspect, there are new concerns about law enforcement access, and what private researchers could do with access to the DNA from every child born in the state.

The Lifesaving Test

It all begins with a crucial and potentially lifesaving blood test.

The Newborn Genetic Screening test is required in all 50 states, and is widely believed to be a miracle of modern medicine.

Nearly every baby born in the United States gets a heel prick shortly after birth. Their newborn blood fills six spots on a special filter paper card. It is used to test baby for dozens of congenital disorders that, if treated early enough, could prevent severe disabilities and even death.

It's estimated that newborn screening leads to a potentially life-saving early diagnosis each year for 5,000 to 6,000 children nationwide.

The California Department of Public Health reports that from 2015-2017 alone, the Newborn Screening test diagnosed 2,498 babies with a "serious congenital disorder that, if left untreated could have caused irreparable harm or death."

But, unless you or your child is diagnosed with one of these disorders, the test is often lost in the fog of childbirth.

We randomly selected six new moms and asked what they knew about their child's genetic test.

Three of the moms remembered the heel prick, while the other three say they think they knew about the test. But, like most parents, none knew what happened to their baby's leftover blood spots after the test.

They were shocked when KPIX reporter Julie Watts explained it to them.

Your rights after the test

The lab generally only needs a few of the blood spots for the baby's own potentially lifesaving genetic test. They use to collect five blood spots total from each child in California, they've now increased that to six.

Some states destroy the blood spots after a year, 12 states store them for at least 21 years.

California, however, is one of a handful of states that stores the remaining blood spots for research indefinitely in a state-run biobank.

Even though the parents pay for the lifesaving test itself, the child's leftover blood spots become property of the state and may be sold to outside researchers without the parent's knowledge or consent.

"I just didn't realize there was a repository of every baby born in the state. It's like fingerprints," new mom Soniya Sapre responded.

Amanda Feld, who had her daughter 15 months ago, was concerned in light of recurring data breaches. "We know that companies aren't very good at keeping data safe. They try," she said.

New mom Nida Jafri chimed in, "There should be accountability and transparency on what it's being used for."

"Blood is inherently or intrinsically identifiable,"added Sapre.

Some states allow parents to opt-in or give informed consent before they store the child's sample.

In California, however, in order to get the potentially lifesaving genetic test for your child, you have no choice but to allow the state to collect and store the remaining samples.

You do have the right to ask the biobank to destroy the leftovers after the fact, though the agency's website states it "may not be able to comply with your request."

You also have the right to find out if your child's blood spots have been used for research, but you would have to know they were being used in the first place and we've discovered that most parents don't.

Samples used to save more lives

Dr. Fred Lorey, the former director of the California Genetic Disease Screening Program, explained that blood spot samples are invaluable to researchers.

"They're important because these samples are needed to create new testing technology," Lorey said.

He explained that they're primarily used to identify new diseases and improve the current tests, ultimately saving more babies

With nearly 500,000 births a year, California's biobank is, by far, the largest and is crucial for research nationwide.

According to the Department of Public Health, more than 9.5 million blood spot samples have been collected since 2000 alone. The state has stored blood spots since 1983.

As a result, California can now test newborns for more than 80 different disorders, more than any other state. The standard panel nationwide is around 30 disorders.

But researchers with the California Genetic Disease Screening Program aren't the only ones with access to samples stored in the biobank.

Blood spots are given to outside researchers for $20 to $40 per spot.

Regulations require that the California Genetic Disease Screening Program to be self-supporting.

"It has to pay for itself," Lorey noted. Allowing outside researchers to buy newborn bloodspots helps to recoup costs.

According to biobank records, the program sold about 16,000 blood spots over the past five years, totaling a little more than $700,000. By comparison, the program reported $128 million in revenue during the last fiscal year alone, mostly generated by the fees parents pay for the test. Parents are charged around $130 on their hospital bill for the Newborn Screening Test itself.

Making money off your DNA

But while the state may not be making money off your child's DNA, Lorey admitted that there is the potential for outside researchers to profit off your child's genetic material.

"Do any of those studies result in something that the company can make money from?" reporter Julie Watts asked Lorey in a recent interview. "Could they create a test or treatment that they ultimately profit from?"

"Theoretically, yes," Lorey admitted. "I'm not aware of any cases that that's happened because virtually all, not all, of these researchers that have made requests are scientific researchers."

He explained that researchers who request the spots must meet specific criteria. Their studies must first be approved by a review board. They're also supposed to return or destroy remaining blood spot samples after use.

However, privacy advocates point to the Cambridge Analytica-Facebook scandal where third-party researchers were supposed to destroy data, but instead used it for profit – and untimely to attempt to influence a presidential election.

Watts pressed Lorey on that point.

"So there is no possibility a researcher may request blood spots for a specific research experiment … but then keep blood spots without the department's knowledge to be used for other purposes?" she asked.

"I want to say no" he said. "But I'm not ready to say no because I know how humans can be sometimes."

"De-identified DNA"

However, Lorey stressed that the blood spots cards, stored in the state biobank, are "de-identified." There is no name or medical information on the card, just the blood spots and a number.

Lorey explained the identifying information is stored in a separate building and after a few years is microfiched so it's not even kept on a server. Samples do need to be re-identified for various reasons, but Lorey says, in those cases, parents are notified.

And to be clear, he stressed, there is also no genome database. The state does not sequence or extract the DNA from the blood spots collected, although a researcher might, depending on the study.

Privacy advocates, like Consumer Watchdog's Jamie Court insist DNA is inherently identifiable.

"There is no such thing as de-identified DNA," Court said. "The very nature of DNA is that it identifies you and your genetic code specifically."

Court points to the recent case of the Golden State Killer. Investigators used public ancestry sites to identify a murder suspect using decades-old unidentified DNA from a crime scene.

And we've learned, researchers aren't the only ones with access to the blood spots.

Law enforcement access

A public records request revealed coroners often use blood spots to identify bodies, and at least one parent requested blood spots to prove paternity.

Law enforcement also can — and does — request identified blood spots. We found at least five search warrants and four court orders, including one to test a child's blood for drugs at birth.

According to the Department Of Public Health, "Only a court order can provide a third-party (including law enforcement) access to an identified stored specimen without parental consent."

"I think the storage of DNA for purposes other than medical research without informed consent clearly is violating a duty and a trust that the state has to the public," Court said. "What are they trying to hide?"

State law says parents should know -- they don't

According to the Department of Public Health, it's not hiding anything. The agency points to page 13 of the Newborn Screening brochure which does disclose that the blood spots are stored.

"In addition to being available on the Internet in multiple languages, healthcare providers give the brochure to parents prenatally and at birthing centers and hospitals," the Department of Public Health stated.

We asked the six new moms to bring in all the paperwork they collected from the hospital. Only one of the six women actually had the required newborn screening pamphlet and she admitted that between delivering a baby and learning to raise a tiny human, she hadn't found the time to flip to page 13.

"I feel like that's something that should have been discussed with us in person, not on whatever page in a document," another new mom, Lesley Merritt, responded.

Argelia Barcena added that they were not told the pamphlet was crucial or mandatory reading material.  "I saw it as reference material, to refer to if needed, they dont tell you 'you must read it,'" she pointed out.

Keep in mind new parents are generally sent home with folders full of paperwork including a variety of medical testing forms and pamphlets with information ranging from breastfeeding and vaccines, to sudden infant death and CPR.

"Everyone who came into our room gave us another pamphlet," New Mom Amanda Feld pointed out.

In the case of the Genetic Screening Pamphlet, the moms agreed they wouldn't have thought it was relevant to read after the fact unless their child was actually diagnosed.

And they're not alone. We conducted an exclusive Survey USA news poll of parents with kids born in California over the past five years.

While a majority of parents reported that they did know about the life-saving test, three-quarters said they didn't know the state would store the leftover blood spots indefinitely for research, and two-thirds weren't sure they ever got the newborn screening information.

When we read the six moms that portion of page 13 that disclosed the blood spots could be used for outside research, they noted that it's not clear the blood spots are stored indefinitely, available to law enforcement, nor that using blood spots for "department approved studies" means giving them to outside researchers." P.13 states:

"Are the stored blood spots used for anything else? Yes. California law requires the NBS program to use or provide newborn screening specimens for department approved studies of diseases in women and children, such as research related to identify-ing and preventing disease."

Lorey helped draft previous versions of the pamphlet. He agreed that the portion on page 13 "could be clarified," but he said he believed the information included provides "adequate disclosure."

He was surprised, however, when Watts showed him all the forms she was sent home from the hospital with and he acknowledged it could be difficult for parents to digest it all while also learning to care for a newborn.

He was also surprised to see the version of the newborn screening brochure that Watts was given.

Instead of the required 14-page pamphlet with the storage disclosure on page 13, she had a one page, tri-fold hand-out with no mention of storage, or a parent's right to opt out of it. Instead there was a web link where parents could go "For more information…"

Required disclosure

State regulations say that parents are supposed to get the full 14 page pamphlet twice, once before their due date, and again in the hospital before the heel prick test.

But in practice, most parents say they didn't even see the pamphlet until after the test, if they got it at all.

While the state says it "distributes more than 700,000 copies of the booklets to health providers each year," it admits that it doesn't track whether doctors are giving them out. It also does not confirm parents are informed of their rights to opt out of storage before storing or selling the child's DNA.

Federal law

Under federal law, blood spots are currently defined as human subjects, and therefore require informed consent for federal research. But, that doesn't apply to private researchers, and even that protection is about to expire when a new federal policy, known as the Common Rule, takes effect this year.

Following strong opposition from the research community, proposed protections for unidentified bio-specimens were stripped from the final rule. This means researchers won't need consent to use de-identified blood spots, and, in some cases, can even use identified blood spots without consent.

It's ultimately up to each state to develop their own policies on disclosure. Parents in  Texas successfully sued the state, ultimately forcing their biobank to destroy samples taken for research without consent or disclosure.

State law

In California, the newborn screening law doesn't actually authorize the state to store a child's leftover blood spots after the test, or give it to outside researchers, it only authorizes the life-saving genetic test itself.

However, the newborn screening law does say that state may store samples of the mother's prenatal blood, which is taken early in the pregnancy, but only if the mother opts in.

Parents don't get to opt in to storing their baby's DNA however and that was not decided by voters or lawmakers.

While the newborn screening law was enacted by the state legislature, the authorization to store every child's DNA and sell it to researchers is actually in a separate regulation enacted by the Director of California Department of Public Health. It says that a child's "blood specimen and information," collected during a test paid for by the child's parents, becomes "property of the state."

"Any tissue sample that is given in a hospital or any medical facility, once it's given, is no longer your property," Lorey explained. "You can agree with that or disagree with that, but it happens to be the law."

In 2015, former California Assemblyman Mike Gatto introduced a law that would have initially made both the test and storage opt-in. It was strongly opposed by the powerful hospital and research lobbies, and after several revisions, it died in the Senate Health Committee.

Health advocates said their primary opposition at the time was due to the fact that Gatto's bill would have made both the test and storage opt in, and since the test itself is crucial to saving lives, they said the test should not be optional.

Researchers, on the other hand, oppose letting parents opt in to the storage too because they believe they would get fewer samples if parents had a choice.

But, that doesn't seem to be the case in California.

Calif. moms opt in to prenatal

Along with newborn blood spots, the California Genetic Disease Screening Program also tests mothers' blood in the first and second trimesters, and they're allowed to opt in.

About 90 percent of pregnant women do opt in to letting the state store their own blood for research. And, unlike the newborn screening test, a majority of moms said they do remember the disclosures and pamphlets about their own genetic test, because they got them early in the pregnancy.

Eighty four percent of parents surveyed said they think they should get information about their child's genetic screening at the same time they learn about their own. That would give them time — several months without the distraction of a newborn — to process the information and understand their rights before the child is born.

Many said they also should have the right to opt out of storage before their child's DNA is stored, or at least give informed consent before it is sold for research.

The problem with opting in

Critics of the opt-in option point to Texas. Following a lawsuit by parents, the biobank was forced to destroy blood spots that were taken without consent to store them for research. Now Texas allows parents to opt-in to storage.

When the potentially life-saving screening test is given in Texas, a storage consent form with a matching ID number is given to the parents to take home from the hospital and review. Blood spots are not stored in the biobank unless parents sign and return the consent form. As a result, a significant percentage of samples are destroyed.

Critics note that many parents never return the form, likely in part due to the distractions of a new baby.

Ultimately, that hurts the biobank and researchers because they get fewer samples, and more importantly, fewer samples from certain communities.

This means that research performed with those samples may not be valid for the entire population. In contrast, research performed with samples from California's biobank is considered very strong and applicable to all babies.

A Calif. opt-in solution

Parents and advocates we spoke with in California would like to see the informed consent given out early in the pregnancy, long before the due date, which may lead to a higher opt-in rate than in Texas.

An opt-in early in the pregnancy would require a system in place to match the mothers' consent forms, collected in the first trimester, with the babies' blood spots, collected months later by hospital staff.

Lorey said California already has a similar matching system in place for the prenatal genetic test so it does seem feasible.

Court believes parents should have the right to opt-in before their baby's genetic material is collected and stored indefinitely by the state, though that would be fought hard by the powerful hospital and research lobbies in Sacramento.

"Informed consent basically means we should know what we're donating a sample for," Court said. "If hospitals and the medical complex is so concerned that if we knew that we might not donate our samples, than we absolutely need to know what they're doing with them because it suggests there is a purpose beyond what we know."

Meanwhile, a majority of parents surveyed said they would have opted-in to storage if given the chance.

Additionally, they said they're more likely to destroy their child's sample now than they would have been if they had been notified of their rights to begin with.

Both the California Hospital Association and the March of Dimes, which opposed previous legation that would have allowed parents to opt-in, say they are now open to improving the way the state informs parents that their child's samples will be stored and "may be used to advance research."

However, neither has an official position on allowing parents to opt-in to storage.

Short of an opt-in, Court said he thinks there should at least be a tracking mechanism to ensure every parent is getting complete and accurate information about the storage early in the pregnancy, before the DNA samples are stored.

Since state law already requires prenatal doctors to provide the information, Court notes, it wouldn't be a stretch to require they also get a signature from moms, allowing the state to track whether or not parents are actually getting the information.

What next?

So the questions remain: Should parents have the right to know that their child's DNA will be stored indefinitely in a state-run biobank and may be available to law enforcement? Should the state have to confirm that parents are informed of their rights before it stores and sells the child's DNA? Who has the power to make that happen?

Karen Smith, appointed by Governor Brown, is the current Director of the Department of Public Health. She has the power to adopt new regulations.

Though, for a more permanent fix, lawmakers in Sacramento would need to pass new legislation.

We've shared our findings with several state lawmakers on the Assembly Privacy Committee.  Many were shocked to learn that the state was storing DNA samples from every baby born in the state and selling them to outside researchers without parents' knowledge or consent.

So far, however, none have shown any interest in giving parents the right to opt out of storage before the child is born, or even requiring the state to confirm parents are informed before storing their baby's blood indefinitely.



oh yeah   ps

did you know that the foreskins from the circumcision of baby boys is used in research also and one of the researchers used her discovery to form a company, then sold at a large profit,
at one time called nu-skin ( I think)  and was the basis for skin for burn patients...
a good result but  also a profit made from a body part  parents had no knowledge or say over

what else has come out of 'research' of human parts taken in a hospital setting?  you can say you want your part back but the hospital says it's theirs.




http://www.thelivingmoon.com/forum/index.php?topic=9220.msg122908#msg122908
« Last Edit: May 13, 2018, 06:07:13 am by space otter »

 


Wal-Mart.com USA, LLC
affiliate_link
Free Click Tracking
Wal-Mart.com USA, LLC

* Recent Posts

Re: kits to feed your family for a year by Shasta56
[March 17, 2024, 12:40:48 pm]


Re: kits to feed your family for a year by space otter
[March 16, 2024, 08:45:27 pm]


Re: kits to feed your family for a year by Shasta56
[March 16, 2024, 07:24:38 pm]


Re: kits to feed your family for a year by space otter
[March 16, 2024, 10:41:21 am]


Re: Full Interview - Lance Corporal Jonathan Weygandt (1997) by RUSSO
[March 12, 2024, 07:22:56 pm]


Re: Full Interview - Lance Corporal Jonathan Weygandt (1997) by RUSSO
[March 09, 2024, 03:25:56 am]


Re: Full Interview - Lance Corporal Jonathan Weygandt (1997) by RUSSO
[March 09, 2024, 02:33:38 am]


Re: Music You Love by RUSSO
[March 09, 2024, 01:10:22 am]


Re: The Man Who Built UFOs For The CIA (Not Bob Lazar!) by RUSSO
[March 09, 2024, 12:14:14 am]


Re: Full Interview - Lance Corporal Jonathan Weygandt (1997) by RUSSO
[March 09, 2024, 12:08:46 am]


Re: A peculiar stone in DeForest by Canine
[March 03, 2024, 11:54:22 am]


Re: The Man Who Built UFOs For The CIA (Not Bob Lazar!) by kevin
[March 03, 2024, 11:30:06 am]


Re: The Man Who Built UFOs For The CIA (Not Bob Lazar!) by kevin
[March 03, 2024, 11:21:15 am]


Re: The Man Who Built UFOs For The CIA (Not Bob Lazar!) by kevin
[March 03, 2024, 11:16:05 am]


Re: Music You Love by RUSSO
[March 02, 2024, 07:58:09 pm]


Re: Full Interview - Lance Corporal Jonathan Weygandt (1997) by RUSSO
[March 02, 2024, 07:50:59 pm]


Re: The Man Who Built UFOs For The CIA (Not Bob Lazar!) by RUSSO
[March 02, 2024, 07:43:03 pm]


Re: The Man Who Built UFOs For The CIA (Not Bob Lazar!) by RUSSO
[March 02, 2024, 07:41:30 pm]


Re: The Man Who Built UFOs For The CIA (Not Bob Lazar!) by kevin
[March 01, 2024, 11:54:23 am]


Re: The Man Who Built UFOs For The CIA (Not Bob Lazar!) by kevin
[March 01, 2024, 11:34:15 am]