Editor

Recent Articles

Swedish politicians consider opening population’s medical-research DNA database for private insurance companies

BY RICK FALKVINGE
PRIVATE INTERNET ACCESS

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. It was a treasure to the scientific community, at the same time as it held enormous privacy risks that were not foreseen at the time. Scientists desired to study Phenylketonuria (PKU), a hereditary metabolism deficiency that, among other things, turns the common diet-soda-sweetener aspartame into a lethal poison. Continue Reading →

Filed under:

Gene therapy partially restores vision in rare blindness disorder

BY IAM SAMPLE
THE GUARDIAN

Two men with progressive blindness have regained some of their vision after taking part in the first clinical trial of a gene therapy for the condition. The men were among six patients to have experimental treatment for a rare, inherited, disorder called choroideremia, which steadily destroys eyesight and leaves people blind in middle age. After therapy to correct a faulty gene, the men could read two to four more lines on an optician’s sight chart, a dramatic improvement that has held since the doctors treated them. One man was treated more than two years ago. The other four patients, who had less advanced disease and good eyesight before the trial, had better night vision after the therapy. Continue Reading →

Filed under:

Britain gives scientist go-ahead to genetically modify human embryos

BY KATE KELLAND
REUTERS

Scientists in Britain have been give the go-ahead to edit the genes of human embryos for research purposes, using a technique that some say could eventually be used to create “designer babies”. Less than a year after Chinese scientists caused an international furor by saying they had genetically modified human embryos, Kathy Niakan, a stem cell scientist from London’s Francis Crick Institute, was granted a license to carry out similar experiments. “The Human Fertilisation and Embryology Authority (HFEA) has approved a research application from the Francis Crick Institute to use new ‘gene editing’ techniques on human embryos,” Niakan’s lab said on Monday. It said the work carried out “will be for research purposes and will look at the first seven days of a fertilized egg’s development, from a single cell to around 250 cells”. The scientists will not be allowed to develop the modified embryos for clinical purposes or implant them into any women. Continue Reading →

Filed under:

Tracking down the ancestry of First Lady Michelle Obama

BY RACHEL SWARNS
ANCESTRY.CA

First Lady Michelle Obama always suspected that she had white ancestors. But she had no idea who they were. With DNA testing and research, I was able to solve that mystery and finally identify the white forbears who had remained hidden in her family tree for more than a century.

All across the country, growing numbers of people are turning to DNA testing as a tool to help unlock the secrets of their roots, using companies such as ancestry.com, among others. When I started researching my new book, “American Tapestry: The Story of the Black, White and Multiracial Ancestors of Michelle Obama,’’ I pored over historical documents that I found in local archives, courthouses and libraries as well as records that I found online on ancestry.com and other state and local databases. But I knew that DNA testing would be the only way to unearth the truth.

I suspected that Mrs. Obama’s white ancestors belonged to the white Shields family that had owned her great-great-great grandmother, Melvinia Shields. So I persuaded several descendants of the black and white Shields to do DNA testing.

The results showed that the two families were related. The DNA testing indicated that Melvinia’s owner’s son was the likely father of Melvinia’s biracial child, Dolphus Shields. (Dolphus Shields is the first lady’s great-great grandfather.)

But last month, members of both sides of the family – black and white — put aside the pain of the past. They got together for the very first time in Rex, Georgia at a ceremony to commemorate Melvinia’s life. They swapped family stories, posed for photographs, exchanged phone numbers and had a meal together.

It was something to see.

David Applin, who is Melvinia’s great-grandson, said the reunion was “wonderful.” And Jarrod Shields, who is the great-great-great grandson of Melvinia’s owner, described it as a day “my family will never forget.” Continue Reading →

Filed under:

Your Genome Belongs To You

BY SHARON TERRY AND ROBERT COOK-DEEGAN
HEALTH AFFAIRS

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 →

Filed under:

Like air and water, DNA should not be patentable

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 →

Filed under:

Genes can’t be patented, rules Australia’s High Court

BY MICHAEL SLEZAK
NEWSCIENTIST

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 →

Filed under:

Kuwait makes DNA tests mandatory after Islamic State bombing

BY AGENCE FRANCE-PRESSE
INTERAKSYON

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 →

Filed under:

DNA Test Agreements Disregard Privacy

BY MARK ANDERSON
IEEE SPECTRUM

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 →

Filed under:

Ancestry.com can use DNA to target ads

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 →

Filed under: