Checking Genes for Disease in Newborns
Wed Dec 14
Diagnosing a disease early could more than save a person’s life, it could save their quality of life. But catching a disease in a child? A baby? Without symptoms, it used to be impossible. Now, the U.K.’s National Health Services is testing their Newborn Genomes Programme next year, which will screen 100,000 newborns for 200 treatable diseases through whole genome sequencing. It will not only save children from lasting damage from disease (or worse), it will save families from the anguish of frequent hospital trips full of uncertainty.
There’s also a similar project in New York with screening for 160 treatable diseases and an optional screening for 100 incurable neurodevelopmental disorders for early therapy. So far, 600 couples have expressed interest. Both studies would track the care given to the babies identified with problems to better understand the value of genome sequencing as a part of standard care.
But regardless of value and efficacy, there are major concerns about ethics and privacy. While these studies have worked hard to develop ethical policies, a recent lawsuit raises questions of privacy for the U.S. in particular (where both healthcare and policies are governed mostly by states and not federally). The lawsuit details how police subpoenaed for a newborn blood sample to investigate a 1996 cold case. It is the first public instance of police turning to newborn blood samples, which are drawn from the heels of nearly every baby in the U.S. and elsewhere to screen for life-threatening inherited disorders. This is undoubtedly a vital health program but such a use by police of collected samples erodes trust in it and the healthcare system as a whole.
BELOW THE FOLD BYTES
Biggest Cuban Exodus In History
Between the utter lack of tourists due to COVID and tight U.S. sanctions from the Trump era. Food has become more scarce and expensive (inflation was forecast at 31% for 2022) with imports dropping by half. Power is unreliable with a good day being 13 hours and 13 minutes with uninterrupted electricity. Cubans, especially younger, working-age ones, are now fleeing as fast as they can to the shores of Florida, risking life and limb to get there. The U.S. under Biden is cautiously moving towards some type of relief (for both sides) by negotiating with the Cuban government, easing the harshest sanctions, and considering better avenues for immigration than through smugglers.
Greenwashing For Investors
Ohio lawmakers hope to turn natural gas into a green energy simply by calling it such. The Ohio Senate Agriculture and Natural Resources Committee last Tuesday tacked the proposal and other amendments onto an unrelated bill about rules for poultry farmers regarding baby chicks. Beyond calling natural gas a “green energy,” the bill would also require state agencies to open parks and other public lands to oil and gas drilling. The Energy Information Administration reports that natural gas combustion accounts for about a third of the United States’ energy-related carbon dioxide emissions, with methane leaks and other emissions releasing additional greenhouse gases.
🎬 Action of the Week
Early disease detection is a long-standing promise of genomics, including cancers. In fact, genome sequencing was used by South Africa to quickly flag the Omicron variant of coronavirus as a concern. Even medical treatment itself promises to be better with genomics as pharmaceuticals could be selected based on our genes for better results and fewer side effects. Learn more about genome sequencing and the policy issues around it from the National Human Genome Research Institute.
THIS WEEK'S SOURCES
- BBC: Newborns Genome Sequencing in UK 4 minutes | 2 days ago
- Science: UK & US Ethics and Cost Questions 3 minutes | 4 days ago
- ACLU: Police Using Newborn Blood Samples 5 minutes | 4 months ago
- CNN: Omicron Flagged With Genome Sequencing 3 minutes | 1 year ago
- National Geographic: Genomics in Healthcare 6 minutes | 3 years ago
ASCII-ING ABOUT THE NEWS
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ShimrodThat’s a lovely set of genes!
Art Credit: ascii.co.uk