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    Amid Climate Crisis, Svalbard Global Seed Vault Gets a Huge Deposit

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    A storage facility in Norway built to safeguard crop diversity recently received more than 30,000 samples as concerns grow about climate change and food insecurity.The Svalbard Global Seed Vault, in the far reaches of northern Norway, is meant to be humanity’s last resort. Imagine it as the world’s doomsday garden shed: a secure genetic capsule, kept safe in case some catastrophe — a meteor strike or climate disaster, perhaps — threatens the planet’s crops.The vault already had about 1.3 million seed samples from about 7,000 species, sent from all over the world. Last week, it received about 30,000 new ones.The number itself is notable: It’s one of the largest one-time additions since the vault opened in 2008. (There are often three deposits a year.)But perhaps more significant is the amount of so-called genebanks — organizations that store their own hoards of seeds in locations around the world — that participated in the latest donation, said Asmund Asdal, the Norwegian vault’s coordinator.“It is more important now that many new genebanks in developing parts of the world are depositing valuable and unique genetic material,” he wrote in an email. Some, he said, made their first contributions last week. Svalbard is not the only place where seeds are stored. But it is meant to be a vault, a mostly sealed storage place for use in case of emergency. Most of the work of seed saving, studying and sharing happens in the genebanks. Those banks are a bit like a computer’s filing system, in which documents are stored but easily accessible. Svalbard is the external hard drive from where files can be recovered if lost.We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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      First Sickle Cell Gene Therapy Patient, 12, Leaves Hospital

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      After 44 days, Kendric Cromer, 12, left the hospital. While his family feels fortunate that he was the first to receive a treatment, their difficult experiences hint at what others will be up against.Kendric Cromer, 12, left Children’s National Hospital in a wheelchair on Wednesday, wearing a T-shirt and cap printed with designs from the anime series “Naruto” and a black face mask. Staff lined the hallway, cheering and waving noisemakers. He had just become the first patient to receive a gene therapy for sickle cell since it was approved — a therapy that is expected to free him from the ravages of the disease.After 44 days in the hospital, he was a bit dazed.“I thought I would have sickle cell for the rest of my life,” he said. The disease had deprived him of his childhood, making everyday activities, like playing basketball or riding a bike, impossible because they could bring on searing pain, often resulting in hospitalizations.But despite the celebratory atmosphere, Kendric and his parents are still shuddering over what they endured during his hospital stay.Nothing, absolutely nothing — not all the discussions with doctors, not all of their reading and highlighting of texts, not the 13-page consent form that included organ damage and even death as possible outcomes — prepared them for what he would go through.About 100,000 people in the United States have sickle cell disease. For the 20,000 or so with the most severe disease, gene therapy may be their only hope of living a normal life. The disease is caused by a mutation in hemoglobin genes that leads to crescent-shaped red blood cells, which tend to get stuck in blood vessels, causing episodes of excruciating pain. The blockages can damage organs, cause strokes and shorten lives.Until recently, most saw no way out.Then, last December, the Food and Drug Administration approved a $3.1 million sickle cell gene therapy by Bluebird Bio of Somerville, Mass., and a $2.2 million treatment by Vertex Pharmaceuticals of Boston. That potentially gives patients like Kendric, if their insurance will pay for the therapy, a path to a life that is not shadowed by the ravages of the disease.We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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      First Day of a ‘New Life’ for a Boy With Sickle Cell

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      There was supposed to be a special party for Kendric Cromer, 12, last Wednesday, but it had to be postponed because he was too groggy to celebrate.It was meant to mark the first day of his new life — the day he became one of the first children ever to be treated with a newly approved gene therapy that will free him from the sickle cell disease that has stolen his childhood.On Sept. 11, despite the excitement of the moment, Kendric was unable to keep his eyes open as he lay in his hospital bed at Children’s National Hospital in Washington because of the drugs he had been given in preparation for his treatment.His life with the disease has been punctuated by episodes of excruciating pain, requiring days in the hospital as doctors tried to control it. Sickle cell eroded his hip bones. It prevented him from riding a bike or playing soccer or even going outside when the temperature was below 55 degrees Fahrenheit because cold often brought on intense pain.Now he could see a future — in a month or so — without pain from sickle cell.“I can’t wait to start my new life,” he told his mother, Deborah Cromer.His disease is caused by an inherited genetic mutation that leads to blood cells that form crescent shapes — sickles — instead of discs. Trapped in blood vessels and organs, the cells cause damage and pain. Gene therapy fixes that problem by giving the patient a new, normal hemoglobin gene.We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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      Patient Dies Weeks After Kidney Transplant From Genetically Modified Pig

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      Richard Slayman received the historic procedure in March. The hospital said it had “no indication” his death was related to the transplant.Richard “Rick” Slayman, who made history at age 62 as the first person to receive a kidney from a genetically modified pig, has died about two months after the procedure.Massachusetts General Hospital, where Mr. Slayman had the operation, said in a statement on Saturday that its transplant team was “deeply saddened” at his death. The hospital said it had “no indication that it was the result of his recent transplant.”Mr. Slayman, who was Black, had end-stage kidney disease, a condition that affects more than 800,000 people in the United States, according to the federal government, with disproportionately higher rates among Black people.Surgeons performing the world’s first kidney transplant from a genetically modified pig into a living human in March.Michelle Rose/Massachusetts General Hospital, via Agence France-Presse — Getty ImagesThere are far too few kidneys available for donation. Nearly 90,000 people are on the national waiting list for a kidney.Mr. Slayman, a supervisor for the state transportation department from Weymouth, Mass., had received a human kidney in 2018. When it began to fail in 2023 and he developed congestive heart failure, his doctors suggested he try one from a modified pig.“I saw it not only as a way to help me, but a way to provide hope for the thousands of people who need a transplant to survive,” he said in a hospital news release in March.His surgery, which lasted four hours, was a medical milestone. For decades, proponents of so-called xenotransplantation have proposed replacing ailing human organs with those from animals. The main problem with the approach is the human immune system, which rejects animal tissue as foreign, often leading to serious complications.Recent advances in genetic engineering have allowed researchers to tweak the genes of the animal organs to make them more compatible with their recipients.The pig kidney that was transplanted into Mr. Slayman was engineered by eGenesis, a biotech company based in Cambridge, Mass. Scientists there removed three genes and added seven others to improve compatibility. The company also inactivated retroviruses that pigs carry and could be harmful to humans.“Mr. Slayman was a true pioneer,” eGenesis said in a statement on social media on Saturday. “His courage has helped to forge a path forward for current and future patients suffering from kidney failure.”Mr. Slayman was discharged from the hospital two weeks after his surgery, with “one of the cleanest bills of health I’ve had in a long time,” he said at the time.In a statement published by the hospital, Mr. Slayman’s family said he was kind, quick-witted and “fiercely dedicated to his family, friends and co-workers.” They said they had taken great comfort in knowing that his case had inspired so many people.“Millions of people worldwide have come to know Rick’s story,” they said in the statement. “We felt — and still feel — comforted by the optimism he provided patients desperately waiting for a transplant.” More