.
Friday, February 28, 2020
Tuesday, February 25, 2020
DNA Stories: Did She Marry Her Cousin?
To watch the video hit here
What are the odds of one Smolenyak marrying another Smolenyak? And if that happened, what are the odds that they were related - kissing cousins of some sort? Well, Megan Smolenyak did marry another Smolenyak, and used DNA testing to answer the obvious question: Did she marry her cousin? [This video was made well before the recent development of the use of genetic genealogy to assist with the resolution of cold cases, so yes, I know that remark I made is now outdated!]
What are the odds of one Smolenyak marrying another Smolenyak? And if that happened, what are the odds that they were related - kissing cousins of some sort? Well, Megan Smolenyak did marry another Smolenyak, and used DNA testing to answer the obvious question: Did she marry her cousin? [This video was made well before the recent development of the use of genetic genealogy to assist with the resolution of cold cases, so yes, I know that remark I made is now outdated!]
Saturday, February 22, 2020
DNA Ancestry Kits: The Risks to Consider Before You Spit
Spit in a vial, pay $200, wait a few weeks.
You might find out you have a large amount of Neanderthal DNA. That you’re related to Napoleon.
Or, that you’ve accidentally been dating your half-sister and have a life-threatening medical condition.
That little genetic testing kit you got for Christmas can turn out to be more than you bargained for.
“Some people have had mistaken results,” Duke University law and philosophy professor Nita Farahany said.
“Some people have discovered things like their ancestry is not what they thought it was, some people have found that their parents are not what they thought they were. There are some psychological consequences to the information as well.”
23andMe has over 5 million customers. AncestryDNA has more than 10 million, and there are dozens more direct-to-consumer DNA analysis companies on the market.
Last year, one test connected a Philadelphia police officer with his dad for the first time, a former Philadelphia police officer himself.
Another test helped a woman find out more about her African heritage— tracing her roots to Nigeria.
But the popularity of the kits has drawn skeptics, too, who say that by sending in a DNA test, you’re putting your personal information at risk.
Your DNA, after all, might be the most personal bit of information you have.
Are these DNA ancestry kits safe?
23andMe says it won’t share your data without your permission, and has strict measures in place to prevent data breaches.
That doesn’t mean it’s not possible.
Data breaches have become more common in general, and cyber attacks affected billions of people last year.
If you use a DNA analysis service, that data could be stolen just as easily as it would be for someone to break into your email account.
“There’s always danger of hacking, and it’s not just 23andMe that faces this danger of hacking,” Delaram Kahrobaei, chair of cyber security at University of York and adjunct professor at New York University and CUNY Graduate Center.
But having your DNA information stolen isn’t quite the same as having your credit card or social security number stolen.
“If someone steals your credit card information, you can just replace your information,” Kahrobaei said.
“If someone steals your genomic data, it’s very hard to protect it anymore because these data are not replaceable.”
The consequences of this kind of breach would show up over the long term.
President George W. Bush signed the Genetic Nondiscrimination Information Act in 2008. The law bans discrimination based on your DNA. It protects your health insurance, and it protects you at work.
For example, your health insurance company couldn’t use your DNA information to find out you’re at high risk for a certain disease, and then raise your rates or refuse to cover you because of it.
However, the law doesn’t protect you when it comes to life insurance, or disability insurance, or at school.
So when you send in your spit, you’re agreeing to that tiny chance. For some, that risk is worth the information they get.
There’s just one problem.
Your family members don’t get the chance to click “yes” on that privacy agreement. And because of that, they might not be aware that by sharing your DNA, you’re sharing theirs, too.
A family affair
Last year, police identified a suspect as the notorious Golden State Killer — who killed 12 people and raped 45 women in California in the 1970s and 1980s — after decades of searching for his identity.
Because he had no past criminal convictions, Joseph James DeAngelo wasn’t in the FBI’s extensive DNA database.
But a distant relative did a home DNA test just for fun. Police were able to identify DeAngelo using the database from one of those genealogy sites.
While some might argue that’s a just use of the information, it’s an example of what can be traced.
In other cases, your relatives might be happy not knowing anything about their father. They might not want to know if they have any half-siblings. They may not want to be contacted at all.
Ask an expert
Over the past few years, many of these services have added health information to the test results in addition to ancestry information. That means you get stats about your likelihood to develop cancer, Parkinson’s disease and Alzheimer’s, among other things.
This information has an educational purpose. It can help inform you about lifestyle decisions, for example: telling you if you’re a fast or slow caffeine metabolizer.
But the results, while helpful, shouldn’t be the only thing informing your lifestyle, Farahany said.
That’s because it’s complex information if you don’t have a background in statistics or genetics.
“The information isn’t filtered through a physician,” she said. “The result is that many people may not understand fully what the risks are, and what it means when it says you have an increased risk of Alzheimer’s disease or breast cancer.”
If you get a health result that worries you, the best thing to do is take it to the doctor’s office, or better, a genetic counselor.
However, a shortage of genetic counselors may make it harder to get the information you need about your results in a world where more people are scrutinizing their DNA.
You may not be able to make big decisions without getting checked out by a doctor. However, deciding on your own to take a bunch of supplements or alter your diet dramatically based on DNA test results can also be harmful in the long run.
‘The end of privacy’?
In some cases, your medical data may be able to help others down the road.
23andMe gives users the option to opt in to sharing their data for medical research purposes, and says most users do. As a result, the data has been fueling research finding genetic variants associated with risk-taking.
The company has also partnered with pharmaceutical giants like Pfizer to identify markers for depression.
Farahany says companies like 23andMe have been able to learn things from the research that might help humanity down the road. That’s in part because of the sheer amount of data available.
“The only way we’re going to get to the point of getting good insights from genetics is having a lot of people’s genomes to analyze,” she said.
Some have privacy concerns about data sharing for research, as well.
A 2015 issue of the magazine Science talks about this kind of research as “the end of privacy,” giving up the anonymity we used to have in favor of the greater good.
There are already solutions in the works to help keep our info safe. One might be encrypting the DNA used in research for privacy.
This way, this type of research can be more accessible, but less invasive.
As with any type of information sharing, deciding to participate comes down to personal choice.
Farahany said she’s in favor of keeping the DNA testing available to consumers. But it might not be right for everyone.
It’s up to you to decide if the test has value for you and pit that against the risks, she said.
To read more of the article hit here
You might find out you have a large amount of Neanderthal DNA. That you’re related to Napoleon.
Or, that you’ve accidentally been dating your half-sister and have a life-threatening medical condition.
That little genetic testing kit you got for Christmas can turn out to be more than you bargained for.
“Some people have had mistaken results,” Duke University law and philosophy professor Nita Farahany said.
“Some people have discovered things like their ancestry is not what they thought it was, some people have found that their parents are not what they thought they were. There are some psychological consequences to the information as well.”
23andMe has over 5 million customers. AncestryDNA has more than 10 million, and there are dozens more direct-to-consumer DNA analysis companies on the market.
Last year, one test connected a Philadelphia police officer with his dad for the first time, a former Philadelphia police officer himself.
Another test helped a woman find out more about her African heritage— tracing her roots to Nigeria.
But the popularity of the kits has drawn skeptics, too, who say that by sending in a DNA test, you’re putting your personal information at risk.
Your DNA, after all, might be the most personal bit of information you have.
Are these DNA ancestry kits safe?
23andMe says it won’t share your data without your permission, and has strict measures in place to prevent data breaches.
That doesn’t mean it’s not possible.
Data breaches have become more common in general, and cyber attacks affected billions of people last year.
If you use a DNA analysis service, that data could be stolen just as easily as it would be for someone to break into your email account.
“There’s always danger of hacking, and it’s not just 23andMe that faces this danger of hacking,” Delaram Kahrobaei, chair of cyber security at University of York and adjunct professor at New York University and CUNY Graduate Center.
But having your DNA information stolen isn’t quite the same as having your credit card or social security number stolen.
“If someone steals your credit card information, you can just replace your information,” Kahrobaei said.
“If someone steals your genomic data, it’s very hard to protect it anymore because these data are not replaceable.”
The consequences of this kind of breach would show up over the long term.
President George W. Bush signed the Genetic Nondiscrimination Information Act in 2008. The law bans discrimination based on your DNA. It protects your health insurance, and it protects you at work.
For example, your health insurance company couldn’t use your DNA information to find out you’re at high risk for a certain disease, and then raise your rates or refuse to cover you because of it.
However, the law doesn’t protect you when it comes to life insurance, or disability insurance, or at school.
So when you send in your spit, you’re agreeing to that tiny chance. For some, that risk is worth the information they get.
There’s just one problem.
Your family members don’t get the chance to click “yes” on that privacy agreement. And because of that, they might not be aware that by sharing your DNA, you’re sharing theirs, too.
A family affair
Last year, police identified a suspect as the notorious Golden State Killer — who killed 12 people and raped 45 women in California in the 1970s and 1980s — after decades of searching for his identity.
Because he had no past criminal convictions, Joseph James DeAngelo wasn’t in the FBI’s extensive DNA database.
But a distant relative did a home DNA test just for fun. Police were able to identify DeAngelo using the database from one of those genealogy sites.
While some might argue that’s a just use of the information, it’s an example of what can be traced.
In other cases, your relatives might be happy not knowing anything about their father. They might not want to know if they have any half-siblings. They may not want to be contacted at all.
Ask an expert
Over the past few years, many of these services have added health information to the test results in addition to ancestry information. That means you get stats about your likelihood to develop cancer, Parkinson’s disease and Alzheimer’s, among other things.
This information has an educational purpose. It can help inform you about lifestyle decisions, for example: telling you if you’re a fast or slow caffeine metabolizer.
But the results, while helpful, shouldn’t be the only thing informing your lifestyle, Farahany said.
That’s because it’s complex information if you don’t have a background in statistics or genetics.
“The information isn’t filtered through a physician,” she said. “The result is that many people may not understand fully what the risks are, and what it means when it says you have an increased risk of Alzheimer’s disease or breast cancer.”
If you get a health result that worries you, the best thing to do is take it to the doctor’s office, or better, a genetic counselor.
However, a shortage of genetic counselors may make it harder to get the information you need about your results in a world where more people are scrutinizing their DNA.
You may not be able to make big decisions without getting checked out by a doctor. However, deciding on your own to take a bunch of supplements or alter your diet dramatically based on DNA test results can also be harmful in the long run.
‘The end of privacy’?
In some cases, your medical data may be able to help others down the road.
23andMe gives users the option to opt in to sharing their data for medical research purposes, and says most users do. As a result, the data has been fueling research finding genetic variants associated with risk-taking.
The company has also partnered with pharmaceutical giants like Pfizer to identify markers for depression.
Farahany says companies like 23andMe have been able to learn things from the research that might help humanity down the road. That’s in part because of the sheer amount of data available.
“The only way we’re going to get to the point of getting good insights from genetics is having a lot of people’s genomes to analyze,” she said.
Some have privacy concerns about data sharing for research, as well.
A 2015 issue of the magazine Science talks about this kind of research as “the end of privacy,” giving up the anonymity we used to have in favor of the greater good.
There are already solutions in the works to help keep our info safe. One might be encrypting the DNA used in research for privacy.
This way, this type of research can be more accessible, but less invasive.
As with any type of information sharing, deciding to participate comes down to personal choice.
Farahany said she’s in favor of keeping the DNA testing available to consumers. But it might not be right for everyone.
It’s up to you to decide if the test has value for you and pit that against the risks, she said.
To read more of the article hit here
Thursday, February 20, 2020
An at-home DNA testing company is helping the FBI solve violent crimes
The move raises privacy concerns
FamilyTreeDNA, a popular at-home DNA test, is working with the FBI to help the agency solve violent crimes, the company acknowledged in a statement released this week. The policy appears to go beyond the privacy rules generally laid out by other major DNA testing companies.
BuzzFeed News first reported on the FamilyTreeDNA policy. The company told the outlet it had cooperated with the agency in less than 10 cases.
In its statement, the company said the laboratory that performs DNA tests for FamilyTreeDNA, as well as others, has been accepting samples from the DNA to identify suspects and human remains. The laboratory is also owned by FamilyTreeDNA president Bennett Greenspan.
The laboratory has been working with the FBI by generating “data profiles” from law enforcement evidence samples. Officials can then upload that sample to databases, including FamilyTreeDNA, and search for possible matches.
The FBI doesn’t have free rein over the genetic database, the company said. “We came to the conclusion that if law enforcement created accounts, with the same level of access to the database as the standard FamilyTreeDNA user, they would not be violating user privacy and confidentiality,” Greenspan said in a statement. To obtain any information beyond that would require a legal order, the statement said.
DNA testing has aided law enforcement in some high-profile cases, including by tracking down the suspected Golden State Killer through a publicly accessible genetic database. Generally, though, private DNA testing companies have pledged to resist working with law enforcement, and voluntarily aiding officials could raise concerns from privacy advocates.
“If we can help prevent violent crimes and save lives or bring closure to families, then we’re going to do that,” Greenspan said in the statement. “We’re going to do it within a framework that continues to ensure that the privacy of our customers, which has been paramount to us since day one and remains so today, is protected to the greatest degree possible.”
To read more of the article hit here
FamilyTreeDNA, a popular at-home DNA test, is working with the FBI to help the agency solve violent crimes, the company acknowledged in a statement released this week. The policy appears to go beyond the privacy rules generally laid out by other major DNA testing companies.
BuzzFeed News first reported on the FamilyTreeDNA policy. The company told the outlet it had cooperated with the agency in less than 10 cases.
In its statement, the company said the laboratory that performs DNA tests for FamilyTreeDNA, as well as others, has been accepting samples from the DNA to identify suspects and human remains. The laboratory is also owned by FamilyTreeDNA president Bennett Greenspan.
The laboratory has been working with the FBI by generating “data profiles” from law enforcement evidence samples. Officials can then upload that sample to databases, including FamilyTreeDNA, and search for possible matches.
The FBI doesn’t have free rein over the genetic database, the company said. “We came to the conclusion that if law enforcement created accounts, with the same level of access to the database as the standard FamilyTreeDNA user, they would not be violating user privacy and confidentiality,” Greenspan said in a statement. To obtain any information beyond that would require a legal order, the statement said.
DNA testing has aided law enforcement in some high-profile cases, including by tracking down the suspected Golden State Killer through a publicly accessible genetic database. Generally, though, private DNA testing companies have pledged to resist working with law enforcement, and voluntarily aiding officials could raise concerns from privacy advocates.
“If we can help prevent violent crimes and save lives or bring closure to families, then we’re going to do that,” Greenspan said in the statement. “We’re going to do it within a framework that continues to ensure that the privacy of our customers, which has been paramount to us since day one and remains so today, is protected to the greatest degree possible.”
To read more of the article hit here
Monday, February 17, 2020
Americans are losing interest in at-home DNA ancestry testing
Saturated market and privacy concerns are slowing down the business, with both Ancestry and 23andMe firing workers.
Millions of Americans have purchased DNA kits over the past decade, drawn by the idea of delving into their lineage. But what once seemed like the start of a new industry based on powerful, and increasingly affordable, genetic testing technology is suddenly looking like a blast from the past.
In a blog post this week, Ancestry.com CEO Margo Georgiadis cited a "slowdown in consumer demand across the entire DNA category" over the last 18 months. The company also announced that it was laying off 6% of its workers.
"The DNA market is at an inflection point now that most early adopters have entered the category," she wrote. "Future growth will require a continued focus on building consumer trust and innovative new offerings that deliver even greater value to people."
Launched more than 30 years ago as a way for people to research their family history, Ancestry later added DNA testing so consumers could explore their genetic roots geographically. It announced a new health-focused genetic testing service in October.
Ancestry's layoffs came just weeks after rival DNA testing company 23andMe slashed about 100 positions, or 14%, of its workforce. A spokesperson told CBS MoneyWatch in an email that the move came as 23andMe narrows its focus to its "consumer and therapeutics businesses."
Further evidence of the slowdown for DNA testing came in late 2019, when Veritas Genetics — the first company to map a person's DNA for less than $1,000 — suspended it U.S. operations. The company cited an "unexpected adverse financing situation" as the reason for the move. The company said in a tweet last month that it working to reopen the business. It did not respond to a request for further comment.
The cost-cutting points to shrinking consumer demand for for DNA kits, which experts attribute to a saturated market and, increasingly, privacy concerns.
The latter was highlighted in a recent warning to military employees not to take mail-in DNA tests. The Pentagon in December warned the tests could create security risks and hurt the careers of service members.
"We can conclude the slowdown in DNA testing is responsible for at least the majority of layoffs, as Illumina and everybody else is reporting testing is down," genealogist Blaine Bettinger said. "The growth rate in 2017 and 2018 was huge, and probably not sustainable," he added.
llumina signaled the market for DNA kits was shrinking during a conference call with investors over the summer. The maker of genetic-sequencing technologies cited "weakness" in the direct-to-consumer genetics market in saying it was adapting a "cautious view" of the market for ancestry and health tests. It counts 23andMe among its customers.
Privacy has also been front and center as consumers fret about the data compiled by Facebook, Google and other technology giants. The worries slammed the genetics world in particular after a suspect in the Golden State Killer case was arrested in 2018 based on a genetics match with a family relative. That led to questions about whether individuals can be located and convicted of crimes based on distant relatives' DNA.
High-profile cases where DNA from testing is used to identify a criminal suspect may give consumers pause, and "may make people realize DNA testing is not just for entertainment," Bettinger said. Still, "As genealogists we want as many people in the database as possible, as it helps our research and makes discoveries possible."
Ancestry and other testing companies tell their customers their information will not be used used unless they explicitly opt in to databases used by genealogical researchers. At 23andMe, 80% do opt in for scientific research, so that's 8 million of 10 million users.
According to Bettinger: "Testing companies understand if there's ever a breach or use that wasn't authorized, say goodbye to their business."
Pricing could also be a factor, given that you need a subscription to Ancestry's database of more than 15 million samples.
"The marketing that you're going to find out that your 20% Irish is only appealing for so long," genealogist Rich Venezia told CBS MoneyWatch. "A kit is just $60 but it's another $400 for a year. I use Ancestry every day, so $400 a year is a business necessity for me, but for hobby genealogists who want to do research for their dad for Christmas, it becomes much more expensive."
Separately, Venezia is among those lobbying against proposed fee increases by a federal agency, the U.S. Citizenship and Immigration Services (USCIS), to retrieve older citizenship information, visa applications and other records for deceased relatives.
The cost of getting a single paper file stands at $130, but would surge as much as 380%, to $625, under the proposal involving a USCIS program that lets family members, genealogists and others obtain information about ancestors who came to the U.S. between the late 19th and mid-20th centuries.
The USCIS extended its comment period until next week, with Senator Mitt Romney, a Republican from Utah, among those who've questioned the proposed increase.
To watch several broadcast on the subject hit here
Millions of Americans have purchased DNA kits over the past decade, drawn by the idea of delving into their lineage. But what once seemed like the start of a new industry based on powerful, and increasingly affordable, genetic testing technology is suddenly looking like a blast from the past.
In a blog post this week, Ancestry.com CEO Margo Georgiadis cited a "slowdown in consumer demand across the entire DNA category" over the last 18 months. The company also announced that it was laying off 6% of its workers.
"The DNA market is at an inflection point now that most early adopters have entered the category," she wrote. "Future growth will require a continued focus on building consumer trust and innovative new offerings that deliver even greater value to people."
Launched more than 30 years ago as a way for people to research their family history, Ancestry later added DNA testing so consumers could explore their genetic roots geographically. It announced a new health-focused genetic testing service in October.
Ancestry's layoffs came just weeks after rival DNA testing company 23andMe slashed about 100 positions, or 14%, of its workforce. A spokesperson told CBS MoneyWatch in an email that the move came as 23andMe narrows its focus to its "consumer and therapeutics businesses."
Further evidence of the slowdown for DNA testing came in late 2019, when Veritas Genetics — the first company to map a person's DNA for less than $1,000 — suspended it U.S. operations. The company cited an "unexpected adverse financing situation" as the reason for the move. The company said in a tweet last month that it working to reopen the business. It did not respond to a request for further comment.
The cost-cutting points to shrinking consumer demand for for DNA kits, which experts attribute to a saturated market and, increasingly, privacy concerns.
The latter was highlighted in a recent warning to military employees not to take mail-in DNA tests. The Pentagon in December warned the tests could create security risks and hurt the careers of service members.
"We can conclude the slowdown in DNA testing is responsible for at least the majority of layoffs, as Illumina and everybody else is reporting testing is down," genealogist Blaine Bettinger said. "The growth rate in 2017 and 2018 was huge, and probably not sustainable," he added.
llumina signaled the market for DNA kits was shrinking during a conference call with investors over the summer. The maker of genetic-sequencing technologies cited "weakness" in the direct-to-consumer genetics market in saying it was adapting a "cautious view" of the market for ancestry and health tests. It counts 23andMe among its customers.
Privacy has also been front and center as consumers fret about the data compiled by Facebook, Google and other technology giants. The worries slammed the genetics world in particular after a suspect in the Golden State Killer case was arrested in 2018 based on a genetics match with a family relative. That led to questions about whether individuals can be located and convicted of crimes based on distant relatives' DNA.
High-profile cases where DNA from testing is used to identify a criminal suspect may give consumers pause, and "may make people realize DNA testing is not just for entertainment," Bettinger said. Still, "As genealogists we want as many people in the database as possible, as it helps our research and makes discoveries possible."
Ancestry and other testing companies tell their customers their information will not be used used unless they explicitly opt in to databases used by genealogical researchers. At 23andMe, 80% do opt in for scientific research, so that's 8 million of 10 million users.
According to Bettinger: "Testing companies understand if there's ever a breach or use that wasn't authorized, say goodbye to their business."
Pricing could also be a factor, given that you need a subscription to Ancestry's database of more than 15 million samples.
"The marketing that you're going to find out that your 20% Irish is only appealing for so long," genealogist Rich Venezia told CBS MoneyWatch. "A kit is just $60 but it's another $400 for a year. I use Ancestry every day, so $400 a year is a business necessity for me, but for hobby genealogists who want to do research for their dad for Christmas, it becomes much more expensive."
Separately, Venezia is among those lobbying against proposed fee increases by a federal agency, the U.S. Citizenship and Immigration Services (USCIS), to retrieve older citizenship information, visa applications and other records for deceased relatives.
The cost of getting a single paper file stands at $130, but would surge as much as 380%, to $625, under the proposal involving a USCIS program that lets family members, genealogists and others obtain information about ancestors who came to the U.S. between the late 19th and mid-20th centuries.
The USCIS extended its comment period until next week, with Senator Mitt Romney, a Republican from Utah, among those who've questioned the proposed increase.
To watch several broadcast on the subject hit here
Saturday, February 15, 2020
Who owns your DNA? You should, according to this biodata bill of rights
Biodata reveals an essential, unchangeable part of who we are—and we should have rights to know who’s using it and what they’re doing with it.
In the next decade, businesses and governments will increasingly collect biological data, from facial recognition to DNA. Every time you command a smart speaker, have your face scanned, or track your health on any app, it’s all going into your biological data bank. Today, startups like Voicesense and Sonde Health can decode our voice to make predictions about anything from depression to defaulting on our mortgage. In the U.S., the Department of Homeland Security is planning on developing a DNA database of immigrants in federal detention facilities. Meanwhile, in China, the government is collecting DNA and biometrics from all residents aged 12 to 65 in Xinjiang, a region home to 11 million Muslim Uighurs.
Big Tech is banking on our biology, too: According to CB Insights, genomics is the second most important investment category for the top tech companies, and Alibaba is boosting investments in Hong Kong’s biotech sector.
Adding fuel to the fire, consumers are not only open to sharing their DNA but are also willing to pay more for DNA-based products. In 2019, consumer interest in DNA testing doubled when compared to 2017, and consumers are willing to pay a premium of 20% or more for products and services based on DNA, according to research by Lifenome. While sales of DNA kits from 2017 to 2019 confirm this testing frenzy, there are also signs that consumers are slamming the breaks as privacy concerns become more prominent in the news cycle.
Whether it’s our voice or our DNA, privacy matters because biodata reveals an essential, unchangeable part of who we are—and its unintended use or disclosure can expose individuals to discrimination, manipulation, and levels of surveillance that can threaten our democratic way of life.
Together with our partners at the World Economic Forum, we convened an expert workgroup of academics, entrepreneurs, and professionals in genomics, health tech, policy, and data sciences to set the foundation for a biodata bill of rights that can protect people’s basic rights from companies and governments alike.
THE RIGHT TO UNDERSTAND HOW YOUR BIODATA IS USED, COLLECTED, AND SHARED
According to Statista, there are 3.25 billion digital voice assistants being used in devices around the world. However, we are still unsure how exactly companies are using and processing voice data, including whether Alexa stores conversations from children. Simply put, companies must not be able to bypass people’s right to know how and when their voice is translated into biodata that can be used to reveal intimate details about who they are.
Even welcome legislation like the the California Consumer Privacy Act (CCPA) leaves important gaps in how personal data is actually used. The complexity inherent in data protection can also create massive confusion when we lack a common set of principles.
Clarity is a right we just can’t take for granted anymore. When it comes to biodata, people must be clearly informed of how companies use their data, not just when the data is being traded or shared with third parties.
THE RIGHT TO OWN YOUR BIODATA—AND PROFIT FROM IT
When it comes to biodata, consumer ownership is critical not just to protect people against discrimination, but also to guarantee proper compensation. This presents technical challenges but is far from impossible.
Over the last five years, we have seen organizations like Mimirium and Madhive experiment with data ownership models where consumers own and securely store their data while organizations get access on a case-by-case basis. These models focus on personal data like social security or credit card numbers. But biodata raises the stakes significantly because while you can change a credit card number, you can’t change your DNA or voiceprint.
To prepare for the widespread use of biodata in business, we must adopt and scale distributed data ownership platforms to make it possible for people to fully own their biodata, know and manage information requests, and monetize data exchanges when appropriate.
THE RIGHT TO KEEP YOUR BIODATA ANONYMOUS
Anonymous data does not guarantee actual anonymity, but experts agree that new anonymization techniques and more rigorous testing can have a real impact in protecting privacy. As technologies like facial recognition and personal genomics instantly enable public and private organizations to operate in a state of permanent surveillance, it’s important to preserve people’s right to be anonymous.
The de-anonymized surveillance state is made worse by calls to limit anonymity for the purposes of battling trolling and bad behavior online. Some have demonized anonymity without fully acknowledging its value and role in society, running the risk of eliminating the very possibility of being anonymous for generations to come.
Today, organizations must take action by reassessing their policies and product features to put greater value on the wider range of self-expression and freedom that comes with anonymity.
THE RIGHT TO PORTABLE DATA SYSTEMS DESIGNED FOR BIODATA
Data portability is enforced in the EU by the General Data Protection Regulation (GDPR) and in the U.S. by the CCPA, and perhaps in the future by an act introduced in the U.S. Senate last fall aiming to stimulate competition in the tech sector.
Compliance with GDPR and CCPA on this matter is starting to look increasingly difficult as tech platforms struggle to resolve the tension between privacy and openness. The widespread use of biodata from DNA to biometrics will exacerbate this tension, which could block competition and restrict innovation. But open standards will be essential to ensure a seamless user experience across hyper-personalized services.
Big Tech is already creating alliances like the Voice Interoperability Initiative that recognizes the importance of open standards to make voice services work at scale. Governments should take notice and learn from public experiments taking shape in Brazil and the U.K. that lean on data portability principles to prioritize competition and innovation in a way that benefits the public—not a handful of corporations.
THE RIGHT TO PROVIDE DYNAMIC CONSENT
Today, broad consent is the standard across most organizations dealing with biodata like DNA. This means that consumers generally agree to a wide range of present and future uses.
Dynamic consent would require organizations to include specific uses and update consent requirements on a regular basis. Engineering transparency and user engagement via dynamic consent is a chance to establish an ongoing dialogue rather than yet another box that needs to be checked.
A more open and intentional approach to consent can be the difference between people actively avoiding volunteering their data or being receptive to new offerings. It’s the difference between FitBit users investigating how to delete their data before Google takes charge, and Apple recruiting 400,000 research participants in under eight months.
Securing consent and active participation via transparent methods like Apple’s new research app shows how to establish an ongoing line of communication centered on the use and value of biodata.
THE MARKET IS READY—GOVERNMENTS AND CORPORATIONS ARE NOT
Our research shows that consumers are drawn to the promise of products, services, and experiences personalized to the extreme, resulting in a significant demand for products driven by biodata. At the same time, governments and the private sector are radically expanding the collection and use of biodata.
The question is then, how do we shape a future where biodata improves our way of life rather than becomes a catalyst for a dystopian state of permanent surveillance? The answer begins with acknowledging the fundamental rights that are under threat and demanding a universal agreement to protect them before it’s too late.
To read more of the article hit here
In the next decade, businesses and governments will increasingly collect biological data, from facial recognition to DNA. Every time you command a smart speaker, have your face scanned, or track your health on any app, it’s all going into your biological data bank. Today, startups like Voicesense and Sonde Health can decode our voice to make predictions about anything from depression to defaulting on our mortgage. In the U.S., the Department of Homeland Security is planning on developing a DNA database of immigrants in federal detention facilities. Meanwhile, in China, the government is collecting DNA and biometrics from all residents aged 12 to 65 in Xinjiang, a region home to 11 million Muslim Uighurs.
Big Tech is banking on our biology, too: According to CB Insights, genomics is the second most important investment category for the top tech companies, and Alibaba is boosting investments in Hong Kong’s biotech sector.
Adding fuel to the fire, consumers are not only open to sharing their DNA but are also willing to pay more for DNA-based products. In 2019, consumer interest in DNA testing doubled when compared to 2017, and consumers are willing to pay a premium of 20% or more for products and services based on DNA, according to research by Lifenome. While sales of DNA kits from 2017 to 2019 confirm this testing frenzy, there are also signs that consumers are slamming the breaks as privacy concerns become more prominent in the news cycle.
Whether it’s our voice or our DNA, privacy matters because biodata reveals an essential, unchangeable part of who we are—and its unintended use or disclosure can expose individuals to discrimination, manipulation, and levels of surveillance that can threaten our democratic way of life.
Together with our partners at the World Economic Forum, we convened an expert workgroup of academics, entrepreneurs, and professionals in genomics, health tech, policy, and data sciences to set the foundation for a biodata bill of rights that can protect people’s basic rights from companies and governments alike.
THE RIGHT TO UNDERSTAND HOW YOUR BIODATA IS USED, COLLECTED, AND SHARED
According to Statista, there are 3.25 billion digital voice assistants being used in devices around the world. However, we are still unsure how exactly companies are using and processing voice data, including whether Alexa stores conversations from children. Simply put, companies must not be able to bypass people’s right to know how and when their voice is translated into biodata that can be used to reveal intimate details about who they are.
Even welcome legislation like the the California Consumer Privacy Act (CCPA) leaves important gaps in how personal data is actually used. The complexity inherent in data protection can also create massive confusion when we lack a common set of principles.
Clarity is a right we just can’t take for granted anymore. When it comes to biodata, people must be clearly informed of how companies use their data, not just when the data is being traded or shared with third parties.
THE RIGHT TO OWN YOUR BIODATA—AND PROFIT FROM IT
When it comes to biodata, consumer ownership is critical not just to protect people against discrimination, but also to guarantee proper compensation. This presents technical challenges but is far from impossible.
Over the last five years, we have seen organizations like Mimirium and Madhive experiment with data ownership models where consumers own and securely store their data while organizations get access on a case-by-case basis. These models focus on personal data like social security or credit card numbers. But biodata raises the stakes significantly because while you can change a credit card number, you can’t change your DNA or voiceprint.
To prepare for the widespread use of biodata in business, we must adopt and scale distributed data ownership platforms to make it possible for people to fully own their biodata, know and manage information requests, and monetize data exchanges when appropriate.
THE RIGHT TO KEEP YOUR BIODATA ANONYMOUS
Anonymous data does not guarantee actual anonymity, but experts agree that new anonymization techniques and more rigorous testing can have a real impact in protecting privacy. As technologies like facial recognition and personal genomics instantly enable public and private organizations to operate in a state of permanent surveillance, it’s important to preserve people’s right to be anonymous.
The de-anonymized surveillance state is made worse by calls to limit anonymity for the purposes of battling trolling and bad behavior online. Some have demonized anonymity without fully acknowledging its value and role in society, running the risk of eliminating the very possibility of being anonymous for generations to come.
Today, organizations must take action by reassessing their policies and product features to put greater value on the wider range of self-expression and freedom that comes with anonymity.
THE RIGHT TO PORTABLE DATA SYSTEMS DESIGNED FOR BIODATA
Data portability is enforced in the EU by the General Data Protection Regulation (GDPR) and in the U.S. by the CCPA, and perhaps in the future by an act introduced in the U.S. Senate last fall aiming to stimulate competition in the tech sector.
Compliance with GDPR and CCPA on this matter is starting to look increasingly difficult as tech platforms struggle to resolve the tension between privacy and openness. The widespread use of biodata from DNA to biometrics will exacerbate this tension, which could block competition and restrict innovation. But open standards will be essential to ensure a seamless user experience across hyper-personalized services.
Big Tech is already creating alliances like the Voice Interoperability Initiative that recognizes the importance of open standards to make voice services work at scale. Governments should take notice and learn from public experiments taking shape in Brazil and the U.K. that lean on data portability principles to prioritize competition and innovation in a way that benefits the public—not a handful of corporations.
THE RIGHT TO PROVIDE DYNAMIC CONSENT
Today, broad consent is the standard across most organizations dealing with biodata like DNA. This means that consumers generally agree to a wide range of present and future uses.
Dynamic consent would require organizations to include specific uses and update consent requirements on a regular basis. Engineering transparency and user engagement via dynamic consent is a chance to establish an ongoing dialogue rather than yet another box that needs to be checked.
A more open and intentional approach to consent can be the difference between people actively avoiding volunteering their data or being receptive to new offerings. It’s the difference between FitBit users investigating how to delete their data before Google takes charge, and Apple recruiting 400,000 research participants in under eight months.
Securing consent and active participation via transparent methods like Apple’s new research app shows how to establish an ongoing line of communication centered on the use and value of biodata.
THE MARKET IS READY—GOVERNMENTS AND CORPORATIONS ARE NOT
Our research shows that consumers are drawn to the promise of products, services, and experiences personalized to the extreme, resulting in a significant demand for products driven by biodata. At the same time, governments and the private sector are radically expanding the collection and use of biodata.
The question is then, how do we shape a future where biodata improves our way of life rather than becomes a catalyst for a dystopian state of permanent surveillance? The answer begins with acknowledging the fundamental rights that are under threat and demanding a universal agreement to protect them before it’s too late.
To read more of the article hit here
Wednesday, February 12, 2020
Discovering unknown family through DNA tests
Taking a DNA test might yield some surprises about your heritage; a recent survey shows that more than a quarter of those who use mail-in DNA tests end up learning about close relatives they didn't know about. But it's not always happy or comforting news. Rita Braver talks with people who have met siblings for the first time, and with members of a support group for those who suddenly discover they have different biological parents from those who raised them. She also finds out how employees at 23&Me get special training to counsel people who've made shocking discoveries about their families.
To watch the broadcast hit here
To watch the broadcast hit here
Sunday, February 9, 2020
Police Are Collecting DNA From People Without Telling Them
The New York Police Department is growing a massive DNA database of thousands of genetic profiles, The New York Times reports. DNA samples were sourced from convicts and even from people who were simply questioned. The practice raises plenty of questions regarding privacy rights and civil liberties, especially considering those whose DNA samples weren’t made […]
The New York Police Department is accumulating a massive DNA database of thousands of genetic profiles, The New York Times reports. DNA samples were sourced from convicts and even from people who were simply questioned.
The practice raises questions about privacy rights and civil liberties, especially because the cops collected some DNA samples without even telling subjects, gathering the material from objects like coffee cups, cigarettes, and the rims of water bottles.
Particularly egregious is a sample taken from a 12-year-old who had his DNA sample collected from a straw after talking to the police in 2018, according to the Times.
Chief of detectives of the the NYPD Dermot F. Shea told The Times that the police wasn’t just “indiscriminately collecting DNA. If we did, it would be a database of millions and millions.”
Civil liberties lawyers are working on challenging the NYPD’s methods on the basis of the practice violating the Fourth Amendment — and that it erodes trust in the police, especially when those who haven’t committed a crime have their DNA sampled.
To read more of the article hit here
The New York Police Department is accumulating a massive DNA database of thousands of genetic profiles, The New York Times reports. DNA samples were sourced from convicts and even from people who were simply questioned.
The practice raises questions about privacy rights and civil liberties, especially because the cops collected some DNA samples without even telling subjects, gathering the material from objects like coffee cups, cigarettes, and the rims of water bottles.
Particularly egregious is a sample taken from a 12-year-old who had his DNA sample collected from a straw after talking to the police in 2018, according to the Times.
Chief of detectives of the the NYPD Dermot F. Shea told The Times that the police wasn’t just “indiscriminately collecting DNA. If we did, it would be a database of millions and millions.”
Civil liberties lawyers are working on challenging the NYPD’s methods on the basis of the practice violating the Fourth Amendment — and that it erodes trust in the police, especially when those who haven’t committed a crime have their DNA sampled.
To read more of the article hit here
Saturday, February 8, 2020
RootsTech 2020 Announces Free Livestream Schedule
If you are unable to attend RootsTech in person, you can still attend “virtually.” The following is the announcement from the RootsTech organizers:
Steve Rockwood, FamilySearch CEO, Keynote Speaker at RootsTech 2019RootsTech 2020 announced its free online streaming schedule. Starting Wednesday, February 26, 2020, at 8:00 a.m. MDT, a select number of classes and events, including the daily keynote speakers, will be broadcast live at RootsTech.org. View the free streaming schedule for each day. Join or follow RootsTech social media conversations using #NotAtRootsTech. Sessions will be available to view on-demand after the livestream ends.
Want even more prime content from RootsTech? Purchase or add on the Virtual Pass and get access to 30 recorded classes from the event. These add-on classes will not be livestreamed but will be recorded and published 15 to 20 days following the end of the conference and will be available only to virtual-pass holders.
About RootsTech
RootsTech, hosted by FamilySearch, is a global conference celebrating families across generations, where people of all ages are inspired to discover and share their memories and connections. This annual event has become the largest of its kind in the world, attracting tens of thousands of participants worldwide.
Steve Rockwood, FamilySearch CEO, Keynote Speaker at RootsTech 2019RootsTech 2020 announced its free online streaming schedule. Starting Wednesday, February 26, 2020, at 8:00 a.m. MDT, a select number of classes and events, including the daily keynote speakers, will be broadcast live at RootsTech.org. View the free streaming schedule for each day. Join or follow RootsTech social media conversations using #NotAtRootsTech. Sessions will be available to view on-demand after the livestream ends.
Want even more prime content from RootsTech? Purchase or add on the Virtual Pass and get access to 30 recorded classes from the event. These add-on classes will not be livestreamed but will be recorded and published 15 to 20 days following the end of the conference and will be available only to virtual-pass holders.
About RootsTech
RootsTech, hosted by FamilySearch, is a global conference celebrating families across generations, where people of all ages are inspired to discover and share their memories and connections. This annual event has become the largest of its kind in the world, attracting tens of thousands of participants worldwide.
Thursday, February 6, 2020
Ancestry Announces Lay-Offs and a Change in Corporate Focus on the Family History Business
By Margo Georgiadis, president & chief executive officer
For more than three decades, Ancestry has helped millions of people learn more about themselves by connecting them to their past so they can gain meaningful insights to impact their future. Our relentless focus on serving our customers has enabled us to sustain innovation and market leadership in both Family History and Consumer Genomics. Tens of millions of people have chosen Ancestry as the place to discover, preserve and share their story.
DNA continues to be an important way for millions of people to start their family history journey. About 30 million people worldwide have already started a DNA journey, including over 16 million with Ancestry, seeking to learn more about themselves and make meaningful new connections. And we’re just starting to see the full potential for how genetics impacts health. We’re only at the beginning of all that’s possible.
At the same time, over the last 18 months, we have seen a slowdown in consumer demand across the entire DNA category. The DNA market is at an inflection point now that most early adopters have entered the category. Future growth will require a continued focus on building consumer trust and innovative new offerings that deliver even greater value to people. Ancestry is well positioned to lead that innovation to inspire additional discoveries in both Family History and Health.
Today we made targeted changes to better position our business to these marketplace realities. These are difficult decisions and impact 6 percent of our workforce. Any changes that affect our people are made with the utmost care. We’ve done so in service to sharpening our focus and investment on our core Family History business and the long-term opportunity with AncestryHealth™.
Looking ahead, interest in Family History remains strong and we’re continuing to grow and invest in breakthrough solutions to help people understand their heritage and put people on the path to improved health and wellness. We’re equally committed to building a brand consumers trust, helping lead the industry with best-in-class data stewardship principles and a commitment to trust and transparency, including our annual Transparency Report.
Our team at Ancestry has maintained our leadership position for decades through game-changing product improvements and compelling storytelling and we remain focused on continually innovating to deliver even greater value to those we serve.
For more than three decades, Ancestry has helped millions of people learn more about themselves by connecting them to their past so they can gain meaningful insights to impact their future. Our relentless focus on serving our customers has enabled us to sustain innovation and market leadership in both Family History and Consumer Genomics. Tens of millions of people have chosen Ancestry as the place to discover, preserve and share their story.
DNA continues to be an important way for millions of people to start their family history journey. About 30 million people worldwide have already started a DNA journey, including over 16 million with Ancestry, seeking to learn more about themselves and make meaningful new connections. And we’re just starting to see the full potential for how genetics impacts health. We’re only at the beginning of all that’s possible.
At the same time, over the last 18 months, we have seen a slowdown in consumer demand across the entire DNA category. The DNA market is at an inflection point now that most early adopters have entered the category. Future growth will require a continued focus on building consumer trust and innovative new offerings that deliver even greater value to people. Ancestry is well positioned to lead that innovation to inspire additional discoveries in both Family History and Health.
Today we made targeted changes to better position our business to these marketplace realities. These are difficult decisions and impact 6 percent of our workforce. Any changes that affect our people are made with the utmost care. We’ve done so in service to sharpening our focus and investment on our core Family History business and the long-term opportunity with AncestryHealth™.
Looking ahead, interest in Family History remains strong and we’re continuing to grow and invest in breakthrough solutions to help people understand their heritage and put people on the path to improved health and wellness. We’re equally committed to building a brand consumers trust, helping lead the industry with best-in-class data stewardship principles and a commitment to trust and transparency, including our annual Transparency Report.
Our team at Ancestry has maintained our leadership position for decades through game-changing product improvements and compelling storytelling and we remain focused on continually innovating to deliver even greater value to those we serve.
Saturday, February 1, 2020
Advance Notice to February General Meeting
Genealogical Society of Hispanic America – Southern California
General Meeting: Saturday, February 1, 2020 • 10 a.m. - 3 p.m.
Southern California Genealogical Society Library, 417 Irving Dr., Burbank, California (directions: 818-843-7247)
General Public Invited
What to do after you receive your DNA results:
Strategies and tools to maximize your genetic
genealogy success
• How to evaluate your DNA matches
• How to use the tools provided by the DNA testing companies
• How to use the tools provided by 3rd party companies
• How to maximize the visibility of your DNA results
• How to make your DNA results available to people who test with other DNA testing companies
• How to create a visual DNA profile of you and your family using chromosome painters, DNA Painter, and Visual Phasing
• How to use relative grouping tools
8– Should I upload my data to [GEDmatch]?
Presenter Dale Alsop is a graduate of the University of Utah (BS & MBA); with classes at UCLA (Statistics); and the California State University - Fullerton (Biology, Anthropology, Genetics). Other institutional experience: Institute for Genetic Genealogy (2017-2018) and the Virtual Institute of Genealogical Research
He has attended dozens of classes and seminars from such industry luminaries as CeCe Moore, Blaine Bettinger, Colleen Fitzpatrick, and Ugo Perego. He is a traditional genealogist for 35 years and has taught the subject for 15 years. His first DNA test was from Sorenson Molecular Genealogy Foundation in 2004. He has since tested with Ancestry, 23andMe, MyHeritage, FamilyTreeDNA, and National Geographic. He has taught Genetic Genealogy since 2014
10 am Coffee & Setup
10:30 am GSHA Southern California Announcements
11 - 12 pm Dale Alsop
12 pm Pizza lunch. Two pieces of pizza and soda for $7.
1:30 pm Door Prize Drawing. An eclectic array of prizes, many geared to genealogy. Drawing Tickets $1/each, 6 tickets for $5 or 12 tickets for $10
For meeting details, contact Cathy Romero at cath.romero@sbcglobal.net or 626-485-2276.
FOLLOW US ON: GSHA SC websites: www.gsha-sc.org • gsha-sc.blogspot.com
Facebook: Genealogical Society of Hispanic America - Southern California
2020 General Meetings: 1st Saturday in February, May, August, and December.
GSHA SC’s general meeting programs are generously supported by Educator Paul J. Gomez
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