Genetic rights are a civil right: Legal expert urges overhaul of right to genomic data access

Access to your genetic data is a civil right that needs to be better protected in US law, according to a legal professor assessing the US’ genetic rights protection law a decade after it was introduced.

Americans have enjoyed some protection of their access to their own genomic data, as a result of the 2008 Genetic Information Nondiscrimination Act (GINA), but a commentary published today in the American Journal of Human Genetics argues that the law needs a significant overhaul to fit the reality of 2018.

Since the law passed, consumer genetic testing services, such as those offered by 23andMe and Ancestry DNA, have grown dramatically in number and ubiquity and yet are not covered by the current laws. Meanwhile, medical facilities that are covered have varying interpretations of existing legislation, which can result in requests for access to genetic test results – a civil right – being blocked.

The commentary’s author, Barbara J Evans, alumnae college professor of law and professor of electrical and computer engineering at the University of Houston, argues that while the law was established with positive motives, it fails to meet the reality of current genetic data use, focusing on non-issues when ignoring significant problems.

“Scholars poke fun at GINA for ‘solving’ a problem that, as far as the evidence shows, never actually existed: genetic discrimination in employment and health insurance,” she says. “Meanwhile, GINA declined to tackle problems that cause real headaches for people who are about to undergo genetic testing, such as whether the results might make it impossible to buy long-term care insurance.”

Genetic testing services need to be taken into account in an update to the law, argues Evans. Image courtesy of 23andMe

The right for individuals to access their own genetic data is an area of GINA that Evans argues needs particular attention. When the law was written, it was worded with the assumption that the organisations handling genetic data would be medical facilities protected by existing HIPAA (Health Insurance Portability and Accountability Act) legislation, which was amended to include this right to access.

However in the last few years companies not subject to HIPAA offering genetic testing services have exploded in number and popularity.

“You only have an access right if the party that stores your data happens to be HIPAA-regulated. Most direct-to-consumer testing and cloud data storage services are not HIPAA-regulated, so you may not have an access right if your data are there,” says Evans.

Even when companies are bound by HIPAA, the way the law intersects with other legislation around safety has led to some facilities blocking patients from accessing their genetic data. This is because the significant safety focus has led to regulators such as the US Food and Drug Administration and the Centers for Medicare and Medicaid Services encouraging labs to block people’s access to their genetic data on the grounds that consumers may misinterpret their genetic data and pursue needless or even dangerous treatments or behaviours as a result.

“You have one regulator telling research labs to provide access, to protect civil rights. Other regulators try to block access, citing safety concerns,” she says. “Labs are caught in the middle and many Americans are being deprived of a federally protected civil right to see their data.”

With genetic data set to be available in ever greater numbers and be used in more parts of our lives, it is important that our rights to access it are ensured.

“Having access to your own genomic data also lets you exercise important constitutional rights, such as your First Amendment rights to assemble and petition the government,” says Evans.

“You can go on social media and assemble groups of people with genes like yours and lobby Congress to spend more research dollars studying how those genes affect your health.

“Like the right to vote, access to one’s own genomic data is a foundational civil right that empowers people to protect all their other civil rights.”

Robot takes first steps towards building artificial lifeforms

A robot equipped with sophisticated AI has successfully simulated the creation of artificial lifeforms, in a key first step towards the eventual goal of creating true artificial life.

The robot, which was developed by scientists at the University of Glasgow, was able to model the creation of artificial lifeforms using unstable oil-in-water droplets. These droplets effectively played the role of living cells, demonstrating the potential of future research to develop living cells based on building blocks that cannot be found in nature.

Significantly, the robot also successfully predicted their properties before they were created, even though this could not be achieved using conventional physical models.

The robot, which was designed by Glasgow University’s Regius Chair of Chemistry, Professor Lee Cronin, is driven by machine learning and the principles of evolution.

It has been developed to autonomously create oil-in-water droplets with a host of different chemical makeups and then use image recognition to assess their behaviour.

Using this information, the robot was able to engineer droplets to have different properties­. Those which were found to be desirable could then be recreated at any time, using a specific digital code.

“This work is exciting as it shows that we are able to use machine learning and a novel robotic platform to understand the system in ways that cannot be done using conventional laboratory methods, including the discovery of ‘swarm’ like group behaviour of the droplets, akin to flocking birds,” said Cronin.

“Achieving lifelike behaviours such as this are important in our mission to make new lifeforms, and these droplets may be considered ‘protocells’ – simplified models of living cells.”

One of the oil droplets created by the robot

The research, which is published today in the journal PNAS, is one of several research projects being undertaken by Cronin and his team within the field of artificial lifeforms.

While the overarching goal is moving towards the creation of lifeforms using new and unprecedented building blocks, the research may also have more immediate potential applications.

The team believes that their work could also have applications in several practical areas, including the development of new methods for drug delivery or even innovative materials with functional properties.

Mac spyware stole millions of user images

A criminal case brought against a man from Ohio, US has shed more light on a piece of Mac malware, dubbed Fruitfly, that was used to surreptitiously turn on cameras and microphones, take and download screenshots, log keystrokes, and steal tax and medical records, photographs, internet searches, and bank transactions from users.

Source: Ars Technica

Drone swarm attack strikes Russian military bases

Russia's Ministry of Defence claims its forces in Syria were attacked a week ago by a swarm of home-made drones. According to Russia's MoD Russian forces at the Khmeimim air base and Tartus naval facility "successfully warded off a terrorist attack with massive application of unmanned aerial vehicles (UAVs)"

Source: Science Alert

Las Vegas strip club employs robot strippers

A Las Vegas strip club has flown in robot strippers from London to 'perform' at the club during CES. Sapphire Las Vegas strip club managing partner Peter Feinstein said that he employed the robots because the demographics of CES have changed and the traditional female strippers aren’t enough to lure a crowd to the club anymore.

Source: Daily Beast

GM to make driverless cars without steering wheels or pedals by 2019

General Motors has announced it plans to mass-produce self-driving cars without traditional controls like steering wheels and pedals by 2019. “It’s a pretty exciting moment in the history of the path to wide scale [autonomous vehicle] deployment and having the first production car with no driver controls,” GM President Dan Ammann told The Verge.

Source: The Verge

Russia-linked hackers "Fancy Bears" target the IOC

Following Russia's ban from the upcoming 2018 Winter Olympics, the Russia-linked hacking group "Fancy Bears" has published a set of apparently stolen emails, which purportedly belong to officials from the International Olympic Committee, the United States Olympic Committee, and third-party groups associated with the organisations.

Source: Wired

Scientists discover ice cliffs on Mars

Using images provided by the Mars Reconnaissance Orbiter, scientists have described how steep cliffs, up to 100 meters tall, made of what appears to be nearly pure ice indicate that large deposits of ice may also be located in nearby underground deposits. The discovery has been described as “very exciting” for potential human bases.

Source: Science Mag