BY CURTIS AND HEREWARD
We are approaching a time when you might be too scared to have your genome sequenced.
Only last week, a US senator called for an investigation into the privacy policies of direct-to-consumer DNA companies. But this is only one piece of a puzzle that is about to get much more connected.
As with any kind of personal data there are a number of concerns regarding collection, transmission, storage and use. But unlike most other data, your genome reveals intimate information about not only you, but also the people to whom you are related.
It’s time to talk about who can access that data, how, when and why. Continue Reading →
There is something like gold flowing through the veins of 100-year-old Maria Tegas, and everyone wants a piece of the treasure. The centenarian, who lives in a poor and remote area of central eastern Sardinia – in one of 14 villages known to geneticists and genealogists as the Blue Zone – has not had an easy life. Orphaned at the age of one, she remembers what it was like to go hungry, when homemade acorn bread was her main sustenance. As a young woman, she often walked 15 miles (24km) a day in steep and rocky terrain to bring food home to her six children. “We lived like birds in the sky,” she says in a tiny whisper of a voice. Continue Reading →
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 →
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 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 →
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 →
Henrietta Lacks, a poor black woman from Maryland, had cells removed from her by doctors when she was being treated for terminal cancer in 1951. Researchers found they were the first human cells that could be grown indefinitely in a laboratory. The historic breakthrough paved the way for countless medical treatments. The story of how an African-American tobacco farmer unwittingly transformed biomedicine was made famous by a 2010 best-seller, The Immortal Life of Henrietta Lacks. ‘Left in the dark’
She was 31 years old when she died of cervical cancer at Baltimore’s Johns Hopkins Hospital. Continue Reading →