Local Lawyers Challenge New Kuwaiti Law Creating Mandatory DNA Database Of All Citizens And Visitors

from the hands-off-my-genome dept

One of the most extraordinary government surveillance projects in the world is being rolled out in Kuwait, and involves creating a mandatory DNA database of all citizens and visitors. An article in New Scientist confirms that the system is now under construction:

The government has already begun to enact the law, collecting samples from people they suspect of having falsely claimed Kuwaiti nationality, as well as members of the police and military. From November, all Kuwaitis wishing to renew passports will have to submit DNA samples, while the country's embassies around the world have been told to notify potential visitors that they will be required to give a DNA sample upon arrival in the country.

The good news is that a bunch of public-spirited Kuwaiti lawyers are fighting back:

When the law was passed in July last year, Adel AbdulHadi of the Kuwaiti law firm Adel AbdulHadi & Partners and his colleagues began researching and drafting their challenge to it. Their principal argument is that the law violates privacy and human rights provisions in the country's own constitution, as well as those enshrined in international treaties to which Kuwait is a signatory.

To their credit, the lawyers are funding the challenge themselves, as they feel so strongly that the law should be struck down.

As the article points out, collecting DNA is hardly likely to be a very effective way of deterring would-be terrorists from entering the country. Equally, finding someone's DNA at the site of a terrorist explosion tells you little: by their very nature, such attacks cause tissues from bombers and victims alike to be scattered widely, making forensic DNA analysis difficult. On the other hand, there is considerable scope for abuse:

DNA samples could be used for other purposes, such as identifying illegal immigrants, or determining paternity in country where adultery is a punishable offence.

The New Scientist article offers no views on how likely it is that the legal challenge will succeed. We can only hope that it does, because once such a system is successfully implemented in one country, others are sure to see it as an example that they can follow.

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Filed Under: dna, dna database, kuwait, monitoring, privacy, surveillance

Who Should Get The Benefits When You Donate Your DNA For Research?

from the tales-from-the-Blue-Zone dept

A few weeks back, we wrote about researchers calling for up to five years' exclusivity for clinical trial data derived from volunteers. That kind of information, typically derived from trials of a new drug, tends to be highly specific. But there's another kind which can potentially contain millions of valuable data points. In fact, the genetic information contained within every strand of DNA can not only provide important insights into countless diseases and medical conditions, but is the closest thing that exists to a digital summary of the person it comes from.

Because of that unique ability to store key data about people, collections of DNA have become a hugely important scientific resource. And because DNA is so intimately bound up with a single, identifiable individual, they naturally feel a very strong connection to that digital string and how it is used. Both of those traits are evident in this fascinating story from the Guardian about Sardinia's "Blue Zone" with its unexpectedly long-lived inhabitants:

The story starts nearly 20 years ago when Gianni Pes, a Sardinian scientist at Sassari University, visited nearly all of Sardinia’s 377 municipalities to try to prove that certain areas had an unusually large number of people who lived extremely long lives. When they found a town that met their criteria, they marked it on their map with a blue marker. When they were done, the Sardinian Blue Zone was established.

Naturally, scientists are keen to understand whether there is some genetic characteristic shared by these exceptional individuals:

In all, four databases of DNA samples have been collected over the years, with some researchers refusing to collaborate with others.

That hints at the deepening bitterness that has engulfed this area of research, as two groups claim the right to investigate one of the region's DNA databases:

One of them was Shardna, created by a scientist called Mario Pirastu. Another entity, a partly publicly funded group called Parco Genetico, was established at the same time to facilitate the data collection and act as an intermediary between Shardna and the Blue Zone towns. Now the two groups both claim rights to the database.

It's a complicated tale, with many murky corners, and it's worth reading the whole Guardian feature to follow its twists and turns as various companies go bankrupt, and the precious database containing blood samples from 13,000 Blue Zone inhabitants keeps changing hands. But as the Guardian rightly points out, the real issue is not which outfit should get to own the database, but the following:

The conflict has raised the kind of thorny ethical questions that are likely to become more pervasive as scientists tap into the promise of massive DNA databases to learn more about disease. Should a private company be able to profit from the study of a population’s DNA, when the DNA was voluntarily donated?

Needless to say, lawyers are now involved in resolving the more mundane issues of ownership of the Blue Zone blood samples. But even if a court hands down its judgment for this particular case, the larger ethical issues will remain, and become ever-more pressing as the importance and value of DNA databases continues to rise.

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Filed Under: dna, privatization, public good, research

Sweden Considers Making DNA Donated Purely For Medical Research Available To Police And Insurance Companies

from the so-what-if-we-promised-we-wouldn't? dept

When it comes to biometrics, you really can't beat DNA. You can always erase your fingerprints, or wear contact lenses to fool iris scanners, but there's no way of changing all your DNA enough to make it unrecognizable (even with the new CRISPR technique). Couple that with the fact that we are shedding DNA everywhere we go -- leaving tell-tale markers on everything we touch -- and you have the perfect surveillance mechanism. That's why earlier UK plans to give police access to medical databases are problematic, to say nothing of Kuwait's mandatory DNA database for all citizens, residents and visitors. Now Rick Falkvinge has written a post about troubling moves in Sweden:

Since 1975, Sweden has taken a DNA sample from all newborns for medical research purposes, and asked parents’ consent to do so for this research purpose. This means that over time, Sweden has built the world's most comprehensive DNA database over everybody under 43 years of age. But now, politicians are considering opening up this research-only DNA database to law enforcement and private insurance companies.

As Falkvinge points out, this is not just a betrayal of a trust, it is totally counterproductive:

This is, of course, an outrageous and audacious breach of contract with the parents who were promised the sample would be used only for the good of humanity in terms of medical research. The instant there's a mere suspicion that this will be used against the sampled newborn in the future -- as is the case now -- instead of being used for the good of humanity as a whole, people won't provide the DNA database with more samples, or at least not enough samples to provide researchable coverage.

The risk that Sweden might proceed down this road is also a reminder that once such huge databases are created, it is almost inevitable that one day someone will come along and say: "since we have this information, surely nobody could object to it being used to catch terrorists/pedophiles/rapists etc. etc." And as the news from Sweden shows, initial promises that such sensitive data will only be used for research are worthless, since they can always be revoked later on, and there is no easy way of removing the data once it is on the database.

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Filed Under: dna, information, insurance, law enforcement, medical research, police, privacy, sharing, sweden

Myriad Genetics Refuses To Accept That People Have A Right To Access Their Own DNA Sequences

from the just-because-it's-your-genome,-don't-think-you-own-it dept

One of the biggest victories on the patent front was when the US Supreme Court finally ruled that naturally-occurring DNA cannot be patented. The company involved in this case, Myriad Genetics, didn't give up at this point, but tried to claim that despite this ruling, its patents on genetic testing were still valid. Fortunately, the courts disagreed, and struck down those patents too.

However, as we noted at the time, there's another issue that remains unresolved, which concerns the huge database of DNA that Myriad Genetics has built up over years of sequencing the BRCA1 and BRCA2 genes that have variants linked to cancer. Because of Myriad's unwillingness to provide that important data to the people whose DNA was sequenced, the American Civil Liberties Union (ACLU) has decided to take action:

On May 19, 2016, the ACLU filed a complaint pursuant to the Health Insurance Portability and Accountability Act ("HIPAA") with the U.S. Department of Health & Human Services ("HHS") on behalf of four patients against Myriad Genetics, a genetic testing laboratory based in Utah. The complaint was filed by patients who have experienced cancer, including breast and bladder cancers, or who are members of families with substantial histories of cancer.

All of the patients received genetic testing from Myriad Genetics in order to determine their hereditary risk for various forms of cancer and to guide treatment decisions. They later asked for all of their genetic information, not just the results, but Myriad refused to provide it. As the ACLU explains:

The patients want full access to their genetic information because they know that the understanding of genes and their variants is constantly evolving, and they want to be able to proactively monitor their own cancer risk and that of their family members as scientific knowledge and clinical interpretation of genomic information advances. Most importantly, the patients, many of whom have uncommon genetic variants, are concerned that Myriad controls much of the data about BRCA1 and BRCA2 genetic variants in a proprietary database. This impedes the ability of researchers to better understand whether these variants are connected with various types of cancer. The patients want to have the option of sharing their data with the broader research community.

The last point is key. Myriad is sitting on a wealth of information that might well lead to new treatments and even cures for the many cancers involved. Instead, it is asserting its proprietorial right over DNA that comes from other people. That's particularly egregious since the scientists who first sequenced DNA on a large scale were pioneers in data sharing. As early as 1996, laboratories taking part in the Human Genome Project not only agreed to share their data, but to do so immediately, and with no restrictions. Myriad Genetics' action is totally at odds with the ethos of sharing that lies at the heart of genomics.

As a blog post on the ACLU site notes, on the eve of the HIPAA complaint being filed, Myriad suddenly agreed to provide the information requested, but only on a "voluntary" basis. That is, it refused to recognize the broader rights of patients to their own genetic information. However, the ACLU believes that the law is straightforward here:

Patients are guaranteed access to their health information -- including their genetic data -- under HIPAA. In 2014, the U.S. Department of Health and Human Services amended the HIPAA regulations to make clear that all laboratories, which were previously exempted, are subject to this obligation. And earlier this year, HHS released guidance stating that with respect to genetic testing, patients have a right to access "not only the laboratory test reports but also the underlying information generated as part of the test," including "the full gene variant information generated by the test, as well as any other information in the designated record set concerning the test."

Let's hope this case leads to yet another defeat for Myriad, and establishes once and for all that DNA sequences belong to the people from whom they were obtained. That way they will be free to make data available to researchers for the benefit of everyone, not just for a few companies like Myriad Genetics.

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Filed Under: dna, gene patents, hipaa, patents
Companies: aclu, myriad genetics

DailyDirt: Fingerprints And Watermarks On Everything?

from the urls-we-dig-up dept

Making copies of physical goods is becoming easier and easier all the time. Some folks want to make sure that all these physical items are authentic, devising fingerprinting or watermark technology to identify objects uniquely. Dollar bills, documents and all kinds of valuable things could be tracked with this kind of anti-counterfeiting tagging. Here are just a few other examples of making a mark on stuff that could be useful.

• SmartWater is a chemical fingerprint spray that can help identify thieves (who get caught) by covering them with a durable watermark. This stuff can stay on skin for months, and SmartWater has been a commercial product for decades now. [url]
• Actual fragments of DNA injected into underground wells could help track hydrothermal water for drilling optimal wells for geothermal energy production. DNA-encoded materials can identify where water flows underground, and they're a bit more environmentally friendly and durable than radioactive tracers or chemical dyes. [url]
• Wrinkled silica polymers can be formed into artificial fingerprints that could be used as anti-counterfeit tags. If artificially intelligent robots are going to take over the world someday, maybe we should give them fingerprints just like us. [url]

After you've finished checking out those links, take a look at our Daily Deals for cool gadgets and other awesome stuff.

Filed Under: anti-counterfeiting, dna, energy, fingerprints, geothermal energy, smartwater, watermark

DailyDirt: Feeding A Growing Population...

from the urls-we-dig-up dept

Modern farming is evolving yet again as technology makes growing crops more efficient with increasingly clever tricks. Maybe it's not such a good idea to mess with plant DNA to insert interspecies genes, but maybe there's no reason for increasing crop yields or produce quality, anyway. Biologists are messing around with gene expression pathways instead, so they don't need to change the DNA present -- just when or how the genes are (or aren't) activated. And better fertilizers could be on the way, too. Check out a few of these farming developments.

• There's a way to grow 50% more corn by taking advantage of a newly-discovered regulatory pathway in the plant that controls the stem cell growth of corn (and possibly other crops as well). The resulting ears of corn don't look all that pretty, but significantly more kernels per ear of corn increases crop yields without necessarily using more land or other resources. The researchers are still just exploring this new way to boost corn growth, and if you like eating corn on the cob -- these mutant ears of corn might make you lose your appetite. [url]
• Maybe you've never heard of the Haber-Bosch process, but it's essential for farming since it's been used to create fertilizer (ammonia from nitrogen gas) for about 100 years now. It's an energy intensive process, so the Department of Energy is looking for alternatives that are scalable, more sustainable and don't require fossil fuels. [url]
• Pesticides and GMO crops may be replaced with RNA interference sprays that can kill bugs or alter plant genetic expression. Genetic sprays wouldn't necessarily require GMO crops at all since a sprayed-on solution of RNA could effect desirable results without needing to change any plant DNA. Genes could be turned off at will with a spray, making plants more drought tolerant or poisoning insects by crippling their natural development. [url]

After you've finished checking out those links, take a look at our Daily Deals for cool gadgets and other awesome stuff.

Filed Under: ammonia economy, biotech, corn, dna, farming, fertilizer, genetic sprays, genetics, gmo, haber-bosch process, rna interference

DailyDirt: Not The Food You're Looking For...

from the urls-we-dig-up dept

Eating meat has been a part of the human diet for quite some time, and there's evidence that cooking meat allowed our ancient ancestors to spend less time chewing and more time doing other productive tasks. But now, we're eating a lot more calories and hardly chewing at all -- and soon we'll have robots doing all the hard work for us. With all our new free time, maybe we can spend it making sure we're eating the right things (without necessarily eating a trendy paleo diet).

• Clear Labs has published a DNA analysis of hamburgers sampled from 79 brands and 22 retailers. Veggie burgers were tested that contained beef DNA (as well as other undesirable animal DNA), and meat burgers appeared to contain other meats than listed on their labels. If you really want to know how the sausage is made, you can also check out the Clear Labs report on hot dogs (but take it with a grain of salt). [url]
• Genetic testing of sushi and other fish in restaurants has turned up a surprisingly high number of mislabeled species. The FDA prioritizes food safety over the accurate identification of species, and it can only inspect a fairly small fraction of all the food served. [url]
• Maybe you don't mind a bit of pork in your all beef patties, but how about antibiotics in your favorite fast food? Sure, it's probably not going to kill anyone (directly), but there's always some outrage when people find out there's something they weren't expecting in their food. [url]

After you've finished checking out those links, take a look at our Daily Deals for cool gadgets and other awesome stuff.

Filed Under: antibiotics, dna, fast food, food, genetic testing, hamburger, meat, mislabeled, sushi
Companies: clear labs, fda

DailyDirt: Studying Our Ancient Ancestors

from the urls-we-dig-up dept

Genetic testing is becoming more and more common now. The costs have come down dramatically in a very short time, but our methods of interpreting the results could still stand to mature a bit. DNA is everywhere, and some of the most interesting DNA is from ancient remains that have been preserved naturally in glaciers or by mummifying techniques practiced by ancient Egyptians. We may never get a clear picture of prehistoric people, but some DNA evidence could help clear up a few mysteries (or start some strange protests?).

• A 5,000-year-old glacier mummy has provided scientists with samples of 5,000-year-old human red blood cells. This discovery comes from the very aptly named Institute for Mummies and the Iceman -- which also sounds like an awesome band. [url]
• Analyzing the DNA of King Tutankhamun (aka King Tut) wasn't a simple lab procedure. Foreigners trying to test samples have been denied access due to various reasons (some explained, some not), so an all-Egyptian team of researchers analyzed King Tut's DNA in 2008. However, concerns of DNA contamination persist, even though samples of mummified cat DNA have been successfully obtained using similar techniques without contamination. [url]
• Genetic analysis of some prehistoric Europeans show that all Europeans came from a "founding population" about 37,000 years ago. Since then, there have been at least two population turnovers, but this narrative is based on just dozens of DNA samples that have only recently been extracted from ancient bone remains. [url]

After you've finished checking out those links, take a look at our Daily Deals for cool gadgets and other awesome stuff.

Filed Under: ancestors, biology, cats, dna, genetics, institute for mummies and the iceman, king tut, mummies, red blood cells

DailyDirt: What Kind Of Blood Do You Have?

from the urls-we-dig-up dept

Artificial human blood could make medicine a whole lot easier -- with no more blood drives or inefficient blood matching and possible harmful immune responses to blood transfusions. But until we perfect a way to grow human blood instead of siphoning it out of other people's veins, we're stuck with a somewhat tricky supply chain of a vital fluid. Researchers and vampires are very interested in the field of blood, and if you're not too queasy, check out these links.

• Maybe you think you know your specific blood type: it's A, B, AB or O with some positive or negative thing. Well, blood genomics can get a lot more specific than that. More than 300 blood proteins exist, and 35 of them seem to be medically important so far. Tests on blood DNA could more precisely describe people's blood types, but it's not clear yet how much all these variations matter. [url]
• Some rare blood types are more valuable than others. Only a few dozen people with Rh_null blood (aka the golden blood) are known, and their blood is an extraordinarily 'universal' blood type that can be donated to a wide population of people because it doesn't trigger an immune response. (On the downside, the people with this blood type have very few donors available to them.) [url]
• Human blood is red, and so is most of the blood from animals that people commonly see. However, some other animals can have blue, green or purple blood. So if you thought Klingon blood was a ridiculous color, think again? [url]

After you've finished checking out those links, take a look at our Daily Deals for cool gadgets and other awesome stuff.

Filed Under: biology, blood, blood type, dna, genomics, golden blood, health, klingon, medicine

DailyDirt: Do You See What I See?

from the urls-we-dig-up dept

Blindness or visual impairment affects hundreds of millions of people around the world. Thankfully, cataract surgery and other treatments have reduced the effects of some vision problems, but unfortunately, there are still a few forms of blindness that aren't very treatable. Until someone figures out how to transplant an entire eyeball (which some doctors are actually working on), here are a few other ways that might help restore some sight.

• The field of optogenetics is studying how to control the activity of nerve cells with light, but shining lights through a fiber-optic cable implanted in a brain is a bit more invasive than injecting some DNA into an eyeball. RetroSense Therapeutics is testing a way to restore some sight to blind patients -- by injecting eyes with viruses containing DNA from light-sensitive algae. We've mentioned this approach a few years ago, but it's taken some time to actually get to a trial with human subjects. [url]
• Stem cells have been used to re-grow the lenses in infants who would have been blind from congenital cataracts. This procedure seems to have preferable results compared to the standard method of removing lenses and inserting artificial ones -- and if this can be done more generally, the use of stem cells in regenerative therapies could become more common. [url]
• A head-mounted geomagnetic sensor (aka a compass) on a blind lab rat was connected to its brain and allowed the rat to navigate a maze nearly as well as a mouse with normal vision. This could mean "smart" canes for people that can indicate cardinal directions for the visually impaired -- or implants that could give anyone the additional sense of magnetic fields. [url]

After you've finished checking out those links, take a look at our Daily Deals for cool gadgets and other awesome stuff.

Filed Under: blind, blindness, dna, health, low vision, retina, senses, stem cells, vision, visual impairment, visually impaired
Companies: retrosense therapeutics