Governments will have to be more human, says thought leader Gladwell

Malcolm Gladwell, the social theorist and writer
Updated 13 February 2018
0

Governments will have to be more human, says thought leader Gladwell

DUBAI: Policymakers should adapt their relationship with citizens, moving away from the 19th-century model which has framed government thinking in the modern world, Malcolm Gladwell, the social theorist and writer, told the World Government Summit in Dubai.

“Government institutions were mainly formed nearly 200 years ago to protect their people from unforeseen circumstances. Now there has been a shift in what citizens want from their governments,” he said.

Gladwell, best known for his influential thought leadership books The Tipping Point and Outliers, was speaking at a session entitled “The Future of Humanity” on the last day of the summit.

He said changes in technology and information-processing techniques had led to a change in risks, and in how policymakers and professionals deal with them.

He quoted the examples of officials’ responses to two global crises — the Cuban missile crisis of 1962 and the 9/11 attacks on the United States — as an example of these changes.

“With Cuba, the USA gathered information and then decided on a course of action; in the lead-up to 9/11, there was already a lot of information on the conspiracy and the perpetrators. The challenge was to make sense of what they already had. Cuba was a puzzle, whereas 9/11 was a mystery,” he said.

He explained that “puzzles” and “mysteries” needed different problem-solving approaches, and that changed the relationship between the professionals and their clients, as well as between governments and citizens.

Gladwell said the same process was in evidence in medicine, where doctors’ approach had changed from simple diagnosis and operation, for example with prostate cancer in men, to analysis and evaluation.

“Tackling modern health care problems requires governments to speak to people in a way they’ve never had to before,” he said.

It was also true of education, where the evaluation of teachers’ and students’ relationship had replaced a more simple approach of finding the best teachers.”Now the government’s task in managing a good school has got a lot more complicated,” he said.

The rising threat of cyberattacks — such as the one that halted the British health service last year and which are increasingly feared in the autonomous vehicle industry — has created a “novel kind of risk” for citizens, as had the dangers of climate change-related incidents.

“If there are mass pile-ups on our roads, and major flooding in big cities, it could lead to breakdown in societies. In the 21st century, governments will have to consider how to calm peoples’ fears, not just allocate resources. That’s the challenge: governments are going to have to find a way to be more human,” Gladwell added.


Doctors use HIV in gene therapy to fix ‘bubble boy’ disease

In this April 2019 photo provided by the St. Jude Children's Research Hospital, 2-year old Gael Jesus Pino Alva is held by his mother, Giannina Alva, at the hospital in Memphis. (AP)
Updated 20 April 2019
0

Doctors use HIV in gene therapy to fix ‘bubble boy’ disease

  • It affects 1 in 200,000 newborns, almost exclusively males. Without treatment, it often kills in the first year or two of life

WASHINGTON: They were born without a working germ-fighting system, every infection a threat to their lives. Now eight babies with “bubble boy disease” have had it fixed by a gene therapy made from one of the immune system’s worst enemies — HIV, the virus that causes AIDS.
A study out Wednesday details how scientists turned this enemy virus into a savior, altering it so it couldn’t cause disease and then using it to deliver a gene the boys lacked.
“This therapy has cured the patients,” although it will take more time to see if it’s a permanent fix, said Dr. Ewelina Mamcarz, one of the study leaders at St. Jude Children’s Research Hospital in Memphis.
Omarion Jordan, who turns 1 later this month, had the therapy in December to treat severe combined immunodeficiency syndrome, or SCID.
“For a long time we didn’t know what was wrong with him. He just kept getting these infections,” said his mother, Kristin Simpson. Learning that he had SCID “was just heartbreaking ... I didn’t know what was going to happen to him.”
Omarion now has a normal immune system. “He’s like a normal, healthy baby,” Simpson said. “I think it’s amazing.”
Study results were published by the New England Journal of Medicine. The treatment was pioneered by a St. Jude doctor who recently died, Brian Sorrentino.
SCID is caused by a genetic flaw that keeps the bone marrow from making effective versions of blood cells that comprise the immune system. It affects 1 in 200,000 newborns, almost exclusively males. Without treatment, it often kills in the first year or two of life.
“A simple infection like the common cold could be fatal,” Mamcarz said.
The nickname “bubble boy disease” comes from a famous case in the 1970s — a Texas boy who lived for 12 years in a protective plastic bubble to isolate him from germs. A bone marrow transplant from a genetically matched sibling can cure SCID, but most people lack a suitable donor. Transplants also are medically risky — the Texas boy died after one.
Doctors think gene therapy could be a solution. It involves removing some of a patient’s blood cells, using the modified HIV to insert the missing gene, and returning the cells through an IV. Before getting their cells back, patients are given a drug to destroy some of their marrow so the modified cells have more room to grow.
When doctors first tried it 20 years ago, the treatment had unintended effects on other genes, and some patients later developed leukemia. The new therapy has safeguards to lower that risk.
A small study of older children suggested it was safe. The new study tried it in infants, and doctors are reporting on the first eight who were treated at St. Jude and at UCSF Benioff Children’s Hospital San Francisco.
Within a few months, normal levels of healthy immune system cells developed in seven boys. The eighth needed a second dose of gene therapy but now is well, too. Six to 24 months after treatment, all eight are making all the cell types needed to fight infections, and some have successfully received vaccines to further boost their immunity to disease.
No serious or lasting side effects occurred.
Omarion is the 10th boy treated in the study, which is ongoing. It’s sponsored by the American Lebanese Syrian Associated Charities, the California Institute of Regenerative Medicine, the Assisi Foundation of Memphis and the federal government.
“So far it really looks good,” but patients will have to be studied to see if the results last, said Dr. Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, which helped develop the treatment. “To me, this looks promising.”
Rights to it have been licensed by St. Jude to Mustang Bio. Doctors say they have no estimate on what it might cost if it does become an approved treatment. They say they also hope to try it for more common problems such as sickle cell disease.