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Privacy and security risks with genetic tests like 23andMe, Ancestry

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DNA Testing 23andMeWhile the spit you ship to a genetic testing company is supposed to stay private, it’s getting easier to match your DNA to your name.Hollis Johnson/Business Insider

  • It may be getting easier to link your private and anonymized DNA data to your identity.
  • That means the genetic data you share with a testing company — which may include sensitive health information like your risk of cancer — could one day be matched with your name by an unintended party.
  • While some at-home DNA tests like 23andMe have privacy protocols to protect against this, they’re not a guarantee, experts say. Other companies have fewer safeguards.
  • One key issue is the ability for users to upload their private DNA data to publicly-accessible genetic databases like the one used in the Golden State Killer case.

The data you shared with a genetic testing startup like 23andMe is private — for now.

But maintaining that privacy, which rests on your data being kept anonymous and secure, is getting harder, according to privacy experts, bioethicists, and entrepreneurs.

Your DNA data contains highly sensitive information about your health and identity. Everything from your ancestry to your risk of cancer to information about allergies and predisposition to Alzheimer’s are often included in a genetic test report. Whether it’s a political figure claiming indigenous heritage or a CEO with a genetic risk for mental illness, any one of these factors could be used against someone if they got into the wrong hands.

The most prolific genetic testing companies take thorough steps to protect your privacy, such as scraping personal identifiers like your name from your genetic code before they sell that data to researchers or drug companies. They also typically store your personal information and your genetic data in separate environments to protect against a potential hack.

But those protocols do not protect against several key vulnerabilities, experts say.

One involves what can happen to the data outside of the tough-to-define walls of a DNA testing service. While genetic testing companies can and frequently do share anonymized genetic data with researchers and drug companies, individual users can also upload their private, non-anonymous DNA reports to public databases like GEDmatch. That service, which was used to home in on the Golden State Killer suspect, allows for the identification of relatives who haven’t even taken a genetic test.

Even large pools of anonymized genetic data can theoretically be tied to an individual. For at least the past decade, researchers have demonstrated that by cross-referencing anonymous DNA data with datasets that include personal information, such voter or census rolls, they can correctly “re-identify” significant portions of participants. 

Plus, most of the leading genetic testing services allow customers to download their raw genetic data — the As, Gs, Ts, and Cs that make up their genetic code — using their email and profile login. 

Privacy experts and bioethicists say all of these issues make the current landscape of genetic testing ripe for potential calamity.

“This is not video games that can be downloaded and shared without your permission, or even bank information,” Matt Mitchell, the director of digital safety and privacy for advocacy organization Tactical Tech, told Business Insider.

“You can cancel your credit card. You can’t change your DNA,” he added.

The case of the Golden State Killer: how private and protected DNA data can be exploited in public databases

Golden State KillerJustin Sullivan/Getty Images

When you mail your saliva sample to a company like 23andMe, Ancestry, Helix, or any one of a handful of current DNA testing startups, they run an analysis of the genetic data it contains. That DNA data includes your unique genetic code and it also includes your ancestry data, which can point to relatives. 

To protect your privacy, most of these companies make that data anonymous: they remove your personal information, such as your name, from the data, and they store the DNA data separately from your personal information.

Spokespeople from Ancestry, 23andMe, and Helix all told Business Insider that their privacy policies are designed to protect people’s data within the walls of their platforms. But what happens outside of their domains is up to the individual customer.

In the case of the Golden State Killer, law enforcement agents uploaded their suspect’s DNA to the open personal genomics and genealogy database GEDmatch using a sample from a crime scene. Then, with the help of a team of experts, they were able to comb through and compare several sets of data until they found their suspect, Joseph James DeAngelo. Key to their discovery was the fact that 24 of DeAngelo’s relatives had participated in GEDmatch.

You share a lot of your DNA with your parents and siblings, and less with more distant relatives. But by comparing an anonymous DNA sample with identified ones, researchers can triangulate in on a person’s relatives, and then, identify the person themselves.

None of the leading genetic testing companies allow users to upload raw DNA samples like GEDmatch does. But you can download your Ancestry or 23andMe genetic data and share it with GEDmatch or another public genealogy database.

“Today when you have a de-identified dataset and a complementary resource you can compare that data with — such as something like GEDmatch — you can begin to identify individuals from that,” James Hazel, a biomedical researcher at Vanderbilt University who recently reviewed the privacy policies of several genetic testing companies, told Business Insider.

‘Data is data — once it’s out there, it’s very hard to control’

DNA Testing 23andMeHollis Johnson/Business Insider

Until very recently, researchers considered the risk of re-identification — when someone correctly matches your anonymous DNA data with your personal information — to be extremely low. But as more people participate in genetic testing and as data analysis tools become faster and easier to use, this risk is on the rise, they say.

Hazel said the current risk of re-identification is “significant.”

Dawn Barry, the president and cofounder of genetic research startup LunaDNA and a 12-year veteran of biotech giant Illumina, agreed.

“We need to prepare for a future in which re-identification is possible,” she told Business Insider during a meeting on the sidelines of a health conference organized by the Wall Street Journal.

Since roughly 2009, researchers have demonstrated that by comparing large sets of supposedly anonymous DNA data with public datasets from censuses or voter lists, they could correctly identify between 40% and 60% of all genetic testing participants.

DNA databases have grown significantly since that 2009 experiment.

As of last fall, more than 19 million people had taken a private Ancestry or 23andMe test. On the heels of their growth, participation in public databases like Promethease and GEDmatch have ballooned as well.

“Data is data — once it’s out there, it’s very hard to control,” Hazel said.

David Koepsell, a Yale bioethicist and the cofounder and CEO of blockchain-enabled genomics company EncrypGen, agreed.

“Re-identification is a real concern and people have done it with public databases. It’s not science fiction,” he told Business Insider.

Last November, Yaniv Erlich, a geneticist and the chief science officer of ancestry company MyHeritage, led a study published in the journal Science in which he looked at DNA data from GEDmatch and MyHeritage. Erlich concluded that with a genetic database of 1.3 million US residents, roughly 60% of all white Americans could be traced to a third cousin. This finding was independent of whether people had themseleves participated in a genetic test.

“In the near future,” Erlich wrote in the paper, “the technique could implicate nearly any US individual of European descent.”

Spokespeople from Ancestry, 23andMe, and Helix all outlined comprehensive privacy policies that are designed to protect people’s data when their data remains within the platforms.

“To protect against re-identification, we strip customers’ personally identifiable information from their genetic information, storing the two sets of data in separate, walled-off computing environments,” a 23andMe representative told Business Insider via email.

Helix and Ancestry spokespeople shared similar policies.

‘It could go wrong’: Experts warn against downloading your personal DNA data

Helix DNA 7Many people participate in genetic research under the assumption that they’re anonymous, but that’s tough to guarantee.Hollis JohnsonBut Ancestry, 23andMe, and Helix all allow users to download their raw DNA data. The download is free from Ancestry and 23andMe but costs $499 with Helix. A Helix spokesperson said the fee was because Helix provides a more comprehensive genetic dataset than the other platforms.

In most cases to download their DNA data, a user must log into the platform and select “download my raw DNA.” Then they get an email where they must confirm the download. After clicking confirm, a text file download begins.

23andme raw data download screenshotBusiness Insider / Erin Brodwin

Once a customer downloads their genetic data, however, it is no longer protected by any of company’s security measures.

“What you do with your data is your responsibility, whether that means sharing your login name and password with others, sharing through 23andMe, downloading your data or anything else,” 23andMe’s website reads.

Experts say this setup does not adequately protect users. At minimum, they say the platforms should encrypt the genetic data from the time it is sent to the time it is received. They also pointed out that a person’s login information may be the same as their email, another potential security weakness.

“This is Privacy 101,” Mitchell told Business Insider. “These companies need to have the highest level of security and they don’t.” 

Mitchell and Hazel both said they believed genetic testing companies should use two-factor or multi-factor authentication, a security step enforced by many banks and data companies. It requires users to give two or more pieces of evidence (such as their phone number and a pin) before allowing access to sensitive data.

“This is something a lot of companies do,” said Mitchell. “If someone really cares about your data they’re going to handle it with the utmost caution. Downloading raw data is dangerous and it could go wrong.”

Hazel thinks more users should be aware of these vulnerabilities, as well as the various ways their data may be used that go beyond their initial intentions.

“It comes down to the trade-off,” he said. “How comfortable are you with how the data might be shared and used?”

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Trudeau Government Should Turn to Sustainable Floor Heating In Its New Deal

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A consortium has been chosen by Public Services and Procurement Canada (PSPC) to manage the $1.1-billion overhaul of five heating and cooling plants in the National Capital Region. However, this decision has been met with a lot of disapproval by the country’s largest federal public service union.

Early June, the department announced that Innovate Energy has been awarded the 30-year contract “to design, retrofit, maintain and operate the plants,”winning the bid over a rival group that included SNC-Lavalin.

Minister of Environment, Catherine McKenna, said the federal government was “leading by example” in its bid to drastically reduce the amount of greenhouse gas emissions across the country. McKenna noted that by supporting this project, they’re utilizing heating and cooling infrastructure to promote a more environmentally friendly option.

“We’re very proud that our government is working with partners like Innovate Energy to modernize this critical infrastructure,” she said during the announcement at one of the facilities that will be upgraded, the Cliff Heating and Cooling Plant in downtown Ottawa.

The plants would be known as the district energy system and would heat 80 buildings in the area with steam. It is also expected to cool 67 of these buildings with chilled water through more than 14 kilometres of underground pipes.

Under the Energy Services Acquisition Program, PSPC will be tasked with modernizing the outdated technology in the plants to lower emissions and supportgrowth in the eco-friendly technology sector.

During the first stage of the overhaul, the system would be converted from steam to low temperature hot water and then switched from steam to electric chillers—with the estimated completion date being 2025. PSPC notes that the project will reduce current emissions by 63 per cent, the equivalent of removing 14,000 non-eco-friendly cars off the road.

Afterwards, the natural gas powering the plant will then be replaced by carbon-neutral fuel sources, which according to estimated will reduce emissions by a further 28 per cent. The renovation project is bound to save the government an estimated fee of more than $750 million in heating and cooling costs in the next 40 years.

Furthermore, the implementation of radiant floor heating in Ottawa by the federal government would be an additional step in driving its agenda for a more eco-friendly state.

According to the U.S. Department of Energy’s Energy Savers website, radiant floor heating has a lot of benefits and advantages over alternate heat systems and can cut heating costs by 25 to 50 per cent.

“It is more efficient than baseboard heating and usually more efficient than forced-air heating because no energy is lost through ducts,” the website states.

Radiant floor heating provides an equal amount of heat throughout a building, including areas that are difficult to heat, such as rooms with vaulted ceilings, garages or bathrooms. Consideringit warms people and objects directly—controlling the direct heat loss of the occupant—radiant floor heating provides comfort at lower thermostat settings.

“Radiators and other forms of ‘point’ heating circulate heat inefficiently and hence need to run for longer periods to obtain comfort levels,” reports the Residential Energy Services Network (RESNet).

Radiant heating is a clean and healthy option—a perfect choice for those with severe allergies—as it doesn’t rely on circulating air, meaning there are no potentially irritating particles blowing around the room. Additionally, it is more energy efficient, aesthetically pleasing with wall radiators or floor registers and virtually noiseless when in operation.

“They draw cold air across the floor and send warm air up to the ceiling, where it then falls, heating the room from the top down, creating drafts and circulating dust and allergens.”

It is important for the leadership in Ottawa to equally drive the adoption of radiant floor heating as doing this would lead to increased usage in residential buildings—and even government-owned buildings.

However, in October, the Public Service Alliance of Canada (PSAC), a representative body of employees of the plants,began a campaign target at the government against their decision to use a public-private partnership (P3) for the retrofitting project, citing concerns about costs and safety.

According to the union, outside employees won’t be bound to the same health and safety standards of government workers and that typically P3 projects cost a lot more than traditional public financing deals.

The union demands that the government scraps the proposed project and meet PSAC members and experts to brainstorm on a new way forward that would ensure federal employees continue to operate and maintain the plants.

However, parliamentary secretary to public services and procurement minister, Steve MacKinnon said that the union officials have consulted him but that after conducting an analysis, the P3 option was still the best for the job.

“We didn’t have (to) sacrifice on safety or health — we didn’t have to sacrifice on job security,” he said.

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Steps to becoming a Data Scientist

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Data science has become one of the most in-demand career paths in this century, according to Business Insider. With the amount of information being circulated online, it has created a huge demand for storing, interpreting and implementing big data for different purposes—hence the need for a data scientist.

Today, there too much information flying around for regular people to process efficiently and use. Therefore, it has become the responsibility of data scientists to collect, organize and analyze this data. Doing this helps various people, organizations, enterprise businesses and governments to manage, store and interpret this data for different purposes.

Though data scientists come from different educational backgrounds, a majority of them need to have a technical educational background. To pursue a career in data science, computer-related majors, graduations and post graduations in maths and statistics are quite useful.

Therefore, the steps to becoming a data scientist are quite straightforward.  After obtaining a bachelor’s degree in an IT related field—such as computer science, maths or physics—you can also further your education by obtaining a master’s degree in a data science or any other related field of study. With the necessary educational background, you can now search for a job and obtain the required experience in whichever filed you choose to invest your acquired skills.

Here are the necessary steps to be taken to become a data scientist.

Step 1: Obtain the necessary educational requirements

As earlier noted, different educational paths can still lead to a career in data science. However, it is impossible to begin a career in data science without obtaining a collegiate degree—as a four-year bachelor’s degree is really important. However, according to a report by Business Insider, over 73% of data scientist in existence today have a graduate degree and about 38% of them hold a Ph.D. Therefore, to rise above the crowd and get a high-end position in the field of data science, it is important to have a Master’s degree or a Ph.D.—and with various online data science masters program, obtaining one is quite easy.

Some institutions provide data science programs with courses that will equip students to analyze complex sets of data. These courses also involve a host of technical information about computers, statistics, data analysis techniques and many more. Completing these programs equips you with the necessary skills to function adequately as a data scientist.

Additionally, there are some technical—and computer-based degrees—that can aid you begin a career in data science. Some of them include studies in, Computer Science, Statistics, Social Science, Physics, Economics, Mathematics and Applied Math. These degrees will imbibe some important skills related to data science in you—namely, coding, experimenting, managing large amounts of data, solving quantitative problems and many others.

Step 2: Choose an area of specialization

There rarely exists an organization, agency or business today that doesn’t require the expertise of a data scientist. Hence, it is important that after acquiring the necessary education to start a career as a data scientist, you need to choose an area of specialization in the field you wish to work in.

Some of the specializations that exist in data science today include automotive, marketing, business, defence, sales, negotiation, insurance and many others.

Step 3: Kick start your career as a data scientist

After acquiring the necessary skills to become a data scientist, it is important to get a job in the filed and company of your choice where you can acquire some experience.

Many organizations offer valuable training to their data scientists and these pieces of training are typically centred around the specific internal systems and programs of an organization. Partaking in this training allows you learn some high-level analytical skills that were not taught during your various school programs—especially since data science is a constantly evolving field.

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Artificial intelligence pioneers win tech’s ‘Nobel Prize’

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Computers have become so smart during the past 20 years that people don’t think twice about chatting with digital assistants like Alexa and Siri or seeing their friends automatically tagged in Facebook pictures.

But making those quantum leaps from science fiction to reality required hard work from computer scientists like Yoshua Bengio, Geoffrey Hinton and Yann LeCun. The trio tapped into their own brainpower to make it possible for machines to learn like humans, a breakthrough now commonly known as “artificial intelligence,” or AI.

Their insights and persistence were rewarded Wednesday with the Turing Award, an honor that has become known as technology industry’s version of the Nobel Prize. It comes with a $1 million prize funded by Google, a company where AI has become part of its DNA.

The award marks the latest recognition of the instrumental role that artificial intelligence will likely play in redefining the relationship between humanity and technology in the decades ahead.

Artificial intelligence is now one of the fastest-growing areas in all of science and one of the most talked-about topics in society,” said Cherri Pancake, president of the Association for Computing Machinery, the group behind the Turing Award.

Although they have known each other for than 30 years, Bengio, Hinton and LeCun have mostly worked separately on technology known as neural networks. These are the electronic engines that power tasks such as facial and speech recognition, areas where computers have made enormous strides over the past decade. Such neural networks also are a critical component of robotic systems that are automating a wide range of other human activity, including driving.

Their belief in the power of neural networks was once mocked by their peers, Hinton said. No more. He now works at Google as a vice president and senior fellow while LeCun is chief AI scientist at Facebook. Bengio remains immersed in academia as a University of Montreal professor in addition to serving as scientific director at the Artificial Intelligence Institute in Quebec.

“For a long time, people thought what the three of us were doing was nonsense,” Hinton said in an interview with The Associated Press. “They thought we were very misguided and what we were doing was a very surprising thing for apparently intelligent people to waste their time on. My message to young researchers is, don’t be put off if everyone tells you what are doing is silly.” Now, some people are worried that the results of the researchers’ efforts might spiral out of control.

While the AI revolution is raising hopes that computers will make most people’s lives more convenient and enjoyable, it’s also stoking fears that humanity eventually will be living at the mercy of machines.

Bengio, Hinton and LeCun share some of those concerns especially the doomsday scenarios that envision AI technology developed into weapons systems that wipe out humanity.

But they are far more optimistic about the other prospects of AI empowering computers to deliver more accurate warnings about floods and earthquakes, for instance, or detecting health risks, such as cancer and heart attacks, far earlier than human doctors.

“One thing is very clear, the techniques that we developed can be used for an enormous amount of good affecting hundreds of millions of people,” Hinton said.

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