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Are ancestry DNA tests private? What you’re giving away with a tube of spit – National

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Are ancestry DNA tests private What you’re giving away with a tube of spit National

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Spit in a tube, and we’ll tell you your past — and, perhaps, your future.

That’s the pitch behind many of the direct-to-consumer DNA tests on the market today, which offer to trace your ancestry and spot any genetic mutations that put you at risk for cancer.

But what many of these testers don’t tell you is how much they want your DNA — and how much your $130 test is actually worth to them.


READ MORE:
Mystery van that collected DNA samples and Medicaid info in Louisville shuts down

“Very few of these genetic tests can be run as cheaply as they’re being offered to consumers,” said Malia Fullerton, a professor of bioethics and humanities at the University of Washington. “The way you make your money is by repurposing the data.”

Your DNA has become a commodity in itself, and ancestry companies are storing it in databases that can be used to develop expensive new drugs, study hereditary diseases, increase insurance premiums or even track down potential criminals.

WATCH: Questions surround police mass DNA testing





Some companies have stricter privacy rules than others, but Fullerton says one DNA test could come back to haunt you — or one of your relatives — years down the line.

“Even if you’re willing to take the risk and make your information available … you are dragging along your family members,” Fullerton said.

Here’s what you need to know about the race to cash in on the most intimate piece of personal information you have: your DNA.

What’s in my DNA?

Your DNA is a genetic blueprint for your whole body — from your height and ethnicity to your blood type and risk of hereditary diseases. It’s in all of your cells and it can hold tens of thousands of genes that define who you are.

Scientists created the first full map of a person’s DNA in 2003 at a cost of US$2.7 billion. Nowadays, it only costs about $1,200 to sequence a full human genome or a few hundred dollars to scan parts of the genome, depending on the complexity of the scan.

WATCH: The value of sequencing the human genome





This affordability has triggered a booming DNA-testing industry dedicated to helping you find long-lost relatives and ancestral ties to faraway countries. Newer tests can also spot mutations that put you at risk of developing cancer or identify genes that respond well to certain drugs.

You can collect your own DNA for one of these tests by scraping the inside of your cheek with a cotton swab. It doesn’t hurt, and you certainly won’t miss the DNA in your spit. However, that information can be harmful if it falls into the wrong hands.

Who is banking DNA?

Experts say we’re in the midst of a DNA gold rush as public researchers and private firms race to build their own massive research databases. They want to create a sort of genetic search engine so they can “google” various genes linked to hereditary diseases, aging or drug interactions. However, these databases are only as valuable as the samples they contain — and more samples mean more money for private companies.

AncestryDNA is currently sharing its database of 14 million customers with a Google subsidiary for longevity research. The company 23andMe has a deal with GlaxoSmithKline, a major pharmaceutical company, to develop “novel treatments and cures based on genetic insights from the consented 23andMe community.” The company says approximately eight million of its 10 million customers have opted into its research program.

The rest of the DNA-testing companies are flirting with one million customers, and they tend to share their data more widely.

WATCH: Family reunited through DNA testing





“When you give your genetic information to one of these direct-to-consumer companies, they generally keep it,” said Tim Caulfield, a professor of law at the University of Alberta and Canada Research Chair in health law and policy.


READ MORE:
Why an unmarked van offered cash for DNA samples in low-income areas of Kentucky

Caulfield says you should always read the fine print on direct-to-consumer DNA tests because companies will tell you if they plan to share your data with others. DNA-testing firms are required by law to disclose this up front, but you probably won’t know exactly what’s happening unless you read their terms of service.

“Make sure you know what you’re getting involved in,” Caulfield told Global News.

He adds that your DNA can be used against you in a variety of ways. For example, an insurance company might want to boost your premiums if you have a mutation linked breast cancer, and the FBI might want to check your DNA against its cold-case database, just to see if you’re a partial match.

Investigators found the suspected Golden State Killer by uploading his old DNA sample to GEDmatch, an open-source DNA database, in 2018. They found a partial match with one of his relatives and managed to track him down through process of elimination.

WATCH: Website helps police catch alleged Golden State Killer





AncestryDNA and 23andMe both say they don’t share their data with law enforcement unless they are subpoenaed to do so. However, some of their competitors, including FamilyTreeDNA, have started collaborating with law enforcement.

Canada has made it illegal for employers or insurance companies to discriminate based on genetic data, such as a predisposition toward cancer. However, the science often moves faster than the law can keep up, Caulfield says. The situation also becomes more complicated when you’re sending your DNA to another country where different laws apply.

“I think we need more of a regulatory response in Canada,” Caulfield said.

Private profit ahead of public research

AncestryDNA and 23andMe are the two largest testing companies by far, and they’re sitting on massive amounts of data that the scientific community would love to see. For example, cancer researchers are trying to build their own databases to search for rare genes linked to certain forms of the disease, but they’re working with tens of thousands of samples, not millions.

“You have to pool your data together to understand the bigger picture,” said Dr. Lillian Siu, an oncologist at the Princess Margaret Cancer Centre in Toronto. Siu says private companies are holding onto tremendously helpful information that could push cancer research forward if it were shared more widely.

“This is the only way we can learn,” she told Global News. “If we silo our data, we will only see what we have. We will never see the world.”

WATCH: Preventing breast cancer through genetics





Siu asks her patients to contribute to Project GENIE, a gene-sharing database run by the American Association for Cancer Research. The database includes over 60,000 voluntary patient records from more than a dozen organizations in Canada and the United States.

“We can use that data to learn,” Siu said. “I often use the GENIE data set, for example, to understand the frequency of a mutation.”

However, some genes are one in a million, meaning a database of 60,000 might not have enough samples for a proper study.

Several national health organizations have established similar biobanks. The U.K. Biobank is one of the largest public databases with info from 500,000 volunteers. However, these databases are all dwarfed by the ones run by AncestryDNA and 23andMe.

“The data that is sitting with them is extremely useful for us as well,” Siu said. “They should not hesitate about sharing.”

WATCH: Study suggests genetic markers exist for diabetes, heart disease





Genealogy enthusiast Leah Larkin says ancestry companies are doing a lot of good with their data. She says they help reunite families and give pharmaceutical companies the tools they need to create new life-saving treatments.

“There is a huge upside to all of this DNA testing,” Larkin told Global News. “For them, a large database means they have sufficient power to search for … genes associated with medical conditions.”

However, she also acknowledges that these companies pose a risk to personal privacy, both for their customers and their customers’ families.

“No one can guarantee that anything on the internet is never going to get hacked,” she said.

She adds that these companies are trying to drive a profit so they’re more likely to choose money over other concerns like privacy or the public good.

“If you want absolute privacy, I would say don’t do a test,” Larkin said.

Caulfield says the benefits of getting a DNA test often don’t outweigh the risks, particularly when it comes to getting screened for cancer.

“There is a huge amount of variability between these direct-to-consumer testing companies,” he said.

“People should view it as recreational science and go in with a skeptical eye.”

© 2019 Global News, a division of Corus Entertainment Inc.



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FOREIGN NEWS

Catholic Bishops react to military coup in Mali

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Catholic Bishops react to military coup in Mali

Contrary to the expectations of the people, the leadership of the Episcopal Conference of Mali (CEM) has termed the Tuesday, August 18 military coup in the West African nation as “regrettable” and “a big failure for our democracy” and called for a change of mentality if the country has to put an end to coups.

In an interview with ACI Africa Wednesday, August 19, made available to RECOWACERAO NEWS AGENCY, RECONA, the President of CEM, Bishop Jonas Dembélé said that the governance challenges the country is facing can be managed through dialogue.

“The military coup that led to the ousting of President Ibrahim Boubacar Keïta is regrettable because we are in a state of law and democracy. This is the second time that Mali has had a military coup as a result of the way in which the country is governed. It is a big failure for our democracy even if there were reasons for it,” Bishop Dembélé told ACI Africa.

“It is true that our country has serious challenges including bad governance, the poor management of the economy, corruption, insecurity and so on,” Bishop Dembélé said and probed, “Why is it that we Malians have not managed to engage in dialogue to be able to discuss these problems and face up to these challenges responsibly?”

“Our leaders, our people lack transparency, they hate those who speak the truth and advocate for good governance. This mentality must change for our country to move on,” the Prelate told ACI Africa August 19.

Bishop Dembélé who is a frontline member of RECOWA-CERAO urged the military officials “to ensure a return to democracy as promised but most especially ensuring the new leadership of the country put the people first and tackle the security challenges facing the nation.”

Asked about the role of the Church in the current crisis, the 57-year-old Prelate noted, “For us the Catholic Church in Mali, our role is to preach peace; our role is to preach dialogue. We shall continue in this path of dialogue for peace just like Cardinal Jean Zerbo and some religious leaders initiated.”

“In a state of law, power is not in the hands of certain individuals but to the people. The anger of our people led to this crisis, but we must work for peace and reconciliation in Mali,” Bishop Dembélé said.

He continued in recollections, “The Bishops in Mali have always issued messages before every election in our country sounding the alert and inviting the government to organize transparent elections, ensure good governance and better management of resources.”
“But it seems our messages are never taken into consideration that is why we find ourselves in this situation today,” the Local Ordinary of Kayes Diocese told ACI Africa and added, “If the opinion of the Episcopal Conference of Mali is needed to mediate in bringing back stability and peace in the country, then we are ready.”

As a way forward, the Bishop urged the people of God in Mali to “seek the path to conversion” and to accept dialogue in the spirit of truth and honesty.
“We all want change in our

country, but this change can only be possible if individually we seek the path to conversion. It is for Malians be they Muslims or Christians or members of traditional religion, to do an examination of conscience and accept personal and community conversion in order to engage in sincere dialogue,” he said.

The Malian Prelate added, “Now there is this coup d’état to demand change we really wonder where change should come from. As long as we don’t change our behavior, our mentality, we will always have a repeat of the current situation.”

On Tuesday, August 18, President Keita announced his resignation and dissolved parliament hours after mutinying soldiers detained him at gunpoint, Aljazeera reported.
“For seven years, I have with great joy and happiness tried to put this country on its feet. If today some people from the armed forces have decided to end it by their intervention, do I have a choice? I should submit to it because I do not want any blood to be shed,” President Keita said August 18 during the televised address to the nation.

Rev. Fr. George Nwachukwu
RECOWACERAO NEWS AGENCY, RECONA

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FOREIGN NEWS

Harris accepts VP nomination

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Harris accepts VP nomination

Senator Kamala Harris formally accepted the Democratic nomination for vice president on Wednesday following a scathing speech by former President Barack Obama, who said the fate of the nation” depends entirely on the outcome of this election.”

Both Mr. Obama and Harris stressed the importance of voting, with Harris saying “we’re all in this fight together.” Harris sounded an optimistic note by highlighting her personal history and the promise of America, saying she was “so inspired by a new generation.”

“Make no mistake, the road ahead will not be not easy,” she said. “We will stumble. We may fall short. But I pledge to you that we will act boldly and deal with our challenges honestly. We will speak truths. And we will act with the same faith in you that we ask you to place in us.” She called Mr. Trump a “predator” in a speech that came after Mr. Obama issued his most forceful rebuke of his successor to date, saying Mr. Trump “hasn’t grown into the job because he can’t.”

“This president and those in power — those who benefit from keeping things the way they are — they are counting on your cynicism,” Mr. Obama said. “They know they can’t win you over with their policies. So they’re hoping to make it as hard as possible for you to vote, and to convince you that your vote doesn’t matter.

That’s how they win. That’s how they get to keep making decisions that affect your life, and the lives of the people you love. That’s how the economy will keep getting skewed to the wealthy and well-connected, how our health systems will let more people fall through the cracks. That’s how a democracy withers, until it’s no democracy at all.”

Mr. Obama and Hillary Clinton, speaking earlier in the night, both said they had hoped Mr. Trump would rise to the occasion. But they both stressed what they called his failures while in office, with Mr. Obama saying Mr. Trump has shown “no interest in treating the presidency as anything but one more reality show that he can use to get the attention he craves.”

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Mali coup leaders vow to hold elections as history repeats itself

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Mali coup leaders vow to hold elections as history repeats itself

The Malian soldiers who forced President Ibrahim Boubacar Keita to resign in a coup promised early Wednesday to organize new elections after their takeover was swiftly condemned by the international community.

In a statement carried overnight on state broadcaster ORTM, the mutinous soldiers who staged Tuesday’s military coup identified themselves as the National Committee for the Salvation of the People led by Colonel Major Ismael Wagué.

“With you, standing as one, we can restore this country to its former greatness,” Wagué said, announcing that borders were closed and that a curfew was going into effect from 9 p.m. to 5 a.m

The news of Keita’s departure was met with jubilation by anti-government demonstrators in the capital, Bamako, and alarm by former colonial ruler France and other allies and foreign nations.

The U.N. Security Council scheduled a closed meeting Wednesday August 19, 2020 afternoon to discuss the unfolding situation in Mali, where the U.N. has a 15,600-strong peacekeeping mission. Keita, who was democratically elected in a 2013 landslide and re-elected five years later, still had three years left in his term.

But his popularity had plummeted, and demonstrators began taking to the streets calling for his ouster in June.

West African regional bloc ECOWAS had sent mediators to try and negotiate a unity government but those talks fell apart when it became clear that the protesters would not accept less than Keita’s resignation.

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