BY SHARON TERRY AND ROBERT COOK-DEEGAN
Just four years ago, only two people in the world had their genome sequenced: James D. Watson (co-discoverer of the structure of DNA) and J. Craig Venter (former President of the firm that mounted a private-sector rival to the Human Genome Project). There are now many thousands of such people. At genome meetings, scientists are talking about millions of fully sequenced genomes in coming years. And after that…? It cost roughly a billion dollars to generate the first reference human genome in 2003; last year a company would charge $10,000 for this service. This year it costs a few thousand dollars. And in a few years we should be able to get our genomes sequenced for a few hundred dollars. At some point, our genomic information will get cheap enough for most of us to take the plunge and “get our genomes done.” It may be curiosity, or concern about disease risk, or interest in ancestry and biological relationships in the context of social relationships. This seems big and incipient. Continue Reading →
BY ANDRÉ PICARD
THE GLOBE AND MAIL
‘Gene patents no longer need to stand in the way of diagnosing life-threatening disease.”
That’s how Alex Munter, president and chief executive officer of the Children’s Hospital of Eastern Ontario, summed up the impact of an out-of-court settlement in the lawsuit CHEO launched against Transgenomic Inc. in 2014. Transgenomic, a biotechnology company based in Omaha, Neb., owns five gene patents related to the potentially deadly heart condition Long QT syndrome. What that meant, practically, was that if CHEO (or any other hospital) wanted to test patients for Long QT, they had to send the blood sample to Transgenomic and pay $4,800 – even though the hospital had the ability to do the same tests for about $1,500. Further, if a genetic defect that points to Long QT was discovered incidentally – for example, when the lab did a panel on larger parts of the genome – that information could not be communicated to the patient, again because of the patent. Dubious patents were preventing the timely diagnosis and treatment of sick children and “we found that morally reprehensible,” said Gail Graham, CHEO’s chief of genetics. Continue Reading →
BY MICHAEL SLEZAK
Your genes are no longer patentable in Australia. The country’s highest court found unanimously that two previous Australian judgments allowing patents of genes were wrong, and they do not constitute a patentable invention. The judges unanimously agreed on the outcome, but had different reasons. The majority of judges ruled that the key part of a gene is not its physical structure, but rather the information stored in it, which is not an invention. They wrote: “[Its] substance is information embodied in arrangements of nucleotides. Continue Reading →
BY AGENCE FRANCE-PRESSE
Kuwait’s parliament, reacting to a suicide bombing last week that killed 26 people, adopted a law Wednesday requiring mandatory DNA testing on all the country’s citizens and foreign residents. The legislation, requested by the government to help security agencies make quicker arrests in criminal cases, calls on the interior ministry to establish a database on all 1.3 million citizens and 2.9 million foreign residents. Under the law, people who refuse to give samples for the test face one year in jail and a fine of up to $33,000 (29,700 euros). Those who provide fake samples can be jailed for seven years. Parliament also approved a $400 million emergency funding for spending required by the interior ministry. Continue Reading →
BY MARK ANDERSON
Some personal genomics companies rely on so-called “clickwrap” contracts—agreements to which consumers could one day regret having clicked “Agree.”
Anyone today who spends time in the digital world also enters into contracts in the digital world. And while many consumers today just click through so-called “clickwrap” contracts without reading them, one new study suggests that they take greater caution when clicking “Agree” to the legal terms underpinning, say, a personal DNA test. The new study also leaves the door open for consumer advocates to begin pushing toward stronger consumer standards in personal genome contracts, starting with questioning the very logic of the clickwrap model in the personal genome industry. It’s one thing, after all, to breeze through a lengthy contract when the worst-case scenario is the possible dissemination of, say, your history of iTunes purchases or the contents of your Amazon shopping cart. It’s quite another to blithely risk losing control of parts or the whole of your own genome sequence—arguably the one string of personal data that is both the core of a person’s identity, and a nugget of information that could never be changed if it were compromised. Continue Reading →
BY PAUL ELLENBOGEN
FREEDOM TO TINKER
With the reduction in costs of genotyping technology, genetic genealogy has become accessible to more people. Various websites such as Ancestry.com offer genetic genealogy services. Users of these services are mailed an envelope with a DNA collection kit, in which users deposit their saliva. The users then mail their kits back to the service and their samples are processed. The genealogy company will try to match the user’s DNA against other users in its genealogy and genetic database. Continue Reading →
Elizabeth Parrish, CEO of Bioviva USA Inc. has become the first human being to be successfully rejuvenated by gene therapy, after her own company’s experimental therapies reversed 20 years of normal telomere shortening. Telomere score is calculated according to telomere length of white blood cells (T-lymphocytes). This result is based on the average T-lymphocyte telomere length compared to the American population at the same age range. The higher the telomere score, the “younger” the cells. In September 2015, then 44 year-old CEO of BioViva USA Inc. Elizabeth Parrish received two of her own company’s experimental gene therapies: one to protect against loss of muscle mass with age, another to battle stem cell depletion responsible for diverse age-related diseases and infirmities. Continue Reading →
BY KERRY GOLD
THE GLOBE AND MAIL
When Brittnee Sheridan turned 18, she was legally allowed to undergo genetic testing for BRCA1, a gene that increases risk of breast and ovarian cancers. She did, immediately – even though her grandmother was against it. “We got into an argument because she didn’t want me to get a test,” says Sheridan, who lives in Sudbury. “She said I was ruining my life, potentially.”
Her grandmother had good reason to urge caution – her insurance company had cut her off after she tested positive for the gene. With the help of a lawyer, she eventually re-qualified for coverage, but at a limited amount. Continue Reading →
BY ALEXANDRA BREEN
THE GLOBE AND MAIL
What’s the next frontier in beauty? If you believe in the upswing in science-based brands, it’s your very genetic make up. “Bespoke” skincare brands such as Skin Inc. are popping up in places like Sephora, allowing consumers to create custom blended serums based on their specific needs. Do a quick search online and you’ll find made-to-order facial products by IOMA, TruthArtBeauty and Jennifer Young are just a click away. And then there’s SkinShift and GeneU, two companies making news for their high-tech take on the trend: tailor-made beauty products based on your DNA. Continue Reading →
BY DAVID CYRANOSKI
Cutting-edge gene-editing techniques have produced an unexpected byproduct — tiny pigs that a leading Chinese genomics institute will soon sell as pets.
BGI in Shenzhen, the genomics institute that is famous for a series of high-profile breakthroughs in genomic sequencing, originally created the micropigs as models for human disease, by applying a gene-editing technique to a small breed of pig known as Bama. On 23 September, at the Shenzhen International Biotech Leaders Summit in China, BGI revealed that it would start selling the pigs as pets. The animals weigh about 15 kilograms when mature, or about the same as a medium-sized dog.
At the summit, the institute quoted a price tag of 10,000 yuan (US$1,600) for the micropigs, but that was just to “help us better evaluate the market”, says Yong Li, technical director of BGI’s animal-science platform. In future, customers will be offered pigs with different coat colours and patterns, which BGI says it can also set through gene editing.
With gene editing taking biology by storm, the field’s pioneers say that the application to pets was no big surprise. Some also caution against it. “It’s questionable whether we should impact the life, health and well-being of other animal species on this planet light-heartedly,” says geneticist Jens Boch at the Martin Luther University of Halle-Wittenberg in Germany. Boch helped to develop the gene-editing technique used to create the pigs, which uses enzymes known as TALENs (transcription activator-like effector nucleases) to disable certain genes.
How to regulate the various applications of gene-editing is an open question that scientists are already discussing with agencies across the world. BGI agrees on the need to regulate gene editing in pets as well as in the medical research applications that make up the core of its micropig activities. Any profits from the sale of pets will be invested in this research. “We plan to take orders from customers now and see what the scale of the demand is,” says Li. Continue Reading →