“On Saturday, after a 12-year effort, the Department of Veterans Affairs reached a long-term goal — it enrolled the millionth veteran in a genetic database, the Million Veteran Program. According to the V.A., the Million Veteran Program is the largest such database in the world. It includes not only genetic information but also is linked … Continued
Last week a dozen newborn sequencing research programs from the US, the UK, Europe, Australia, and the Middle East shared progress updates and future plans at the second annual International Conference on Newborn Sequencing (ICoNS) in London. Robert Green and Ingrid Holm, co-PIs of the BabySeq2 study, shared enrollment updates from the second iteration of … Continued
Read about how the second iteration of The BabySeq Project, BabySeq 2.0, is striving to make genome sequencing accessible to a diverse population of newborns at Boston Children’s Hospital and other sites around the country. Ingrid Holm, MD, MPH who co-leads BabySeq 2.0 describes how seeking input from a Community Advisory Board from each participating … Continued
Fashion 4 Development (F4D) in partnership with Human Kind Institute hosted the Third Annual Sustainable Goals Banquet on Monday, September 18th during the 78th Session of the United Nations General Assembly (UNGA). The evening’s theme was ‘Healthier People, Healthier Planet.’ The night’s final award served as a tribute to the late Franca Sozzani, Editor in … Continued
Each month, the editors of Human Genetics and Genomics Advances interview an early-career researcher who has published work in the journal. This month they featured G2P collaborator Dr. Nina Gold to discuss her paper Phenotypes of undiagnosed adults with actionable OTC and GLA variants.
A recent editorial by The Lancet dives into the debate on universal newborn sequencing. While using genome sequencing as a screening tool for newborns has the potential to offer a great deal of relevant health information, there are certainly ethical issues and other challenges that also need to be addressed. The BabySeq Project is cited … Continued
“The pathogenic or likely pathogenic variants turned up in 13 genes, the team noted, and included variants implicated in Lynch syndrome, breast and ovarian cancer, dilated cardiomyopathy, and other actionable adult-onset or childhood-onset conditions.”
“In the future, imagine identifying a risk for a devastating illness in a healthy newborn baby,” Green said. “Imagine then being able to find the biomarkers for the ones who are going to develop the disease and even preventing it. Imagine how thrilling that would be.”
“There are ethicists who say a child should not be used as a genetic canary in a coal mine — that one member of a family should not be used without their consent as the access point for a whole family, but I’d like to challenge that. Look at these mothers. We arguably saved their … Continued
“Omics data could herald a revolution in healthcare. The analysis of rich, interconnected and longitudinal multi-omics datasets promises a better understanding of the underlying biology of human health and disease, which in turn could lead to more effective prevention, earlier and more accurate diagnoses, new treatments and better choice of treatments. Despite that promise, only … Continued
“Anna Lewis, a Harvard researcher who studies the ethical, legal and social implications of genetics research, said that environmental DNA hadn’t been widely discussed by experts in bioethics. But after the findings from Dr. Duffy and his colleagues, it will be.”
“In a newly released study, nearly nine of 10 experts on rare diseases agreed that sequencing healthy newborns’ DNA to reveal treatable genetic disorders should be available for all infants. At least half of experts also endorsed testing for more than 400 genes as part of such newborn genomic screens. These NCATS-supported study results might … Continued
“While newborns are only screened for about 60 treatable conditions, there are hundreds of genetic disorders that have targeted treatments. Now, a national survey of experts in rare diseases found the vast majority support DNA sequencing in healthy newborns…’It has been a longstanding dream to someday offer DNA sequencing to all newborns in order to … Continued
“Research led by Mass General Hospital for Children suggests that almost 90% of rare disease experts are in favor of newborn genome sequencing for monogenic treatable disorders…’Early identification of infants who are at risk for genetic disorders can be lifesaving and screening has the potential to improve healthcare disparities for affected children,’ said lead author … Continued
“An overwhelming majority of rare disease experts agree that a genomic sequencing test for monogenic treatable conditions should be available to all newborns, a new survey shows.”
“When 238 rare-disease doctors across the U.S. were surveyed by a research team at Mass General Brigham in Boston, 88% of them agreed that DNA sequencing to screen for certain treatable childhood disorders should be made available to all newborns. The study was published Monday in JAMA Network Open.”
Genomes2People was featured in the latest issue of Brigham Clinical & Research News “Look who’s talking”. Past winners of the Brigham Research Institute’s BRIght Futures Prize share about the impact that the $100,0000 award has had on their work and careers. “In 2012, we were delighted to be the very first winners of the BRIght … Continued
Dr. Robert Green discusses considerations for screening for autism amidst a complicated ethical landscape in an interview with proto.life
Dr. Robert Green gives his perspective on Beethoven’s DNA being decoded from centuries-old hair samples in an interview with the Washington Post.
Congratulations to G2P Genetic Counselor Janelle Shea and Operations Coordinator Shaye Williams for being nominated for and winning The Brigham Way Award, which recognizes employees who foster a culture of excellence, respect and professionalism by going above and beyond their duties to create an exceptional Brigham Experience for our patients and colleagues. Janelle celebrated her … Continued
At the inaugural International Conference on Newborn Sequencing (ICoNS) in Boston last week hosted by Genomes2People and Ariadne Labs, researchers outlined plans from eight studies in the US, the UK, Europe, and Australia.
“This week, Dr. Robert Green is hosting a conference in Boston, bringing together researchers and industry representatives from the U.S., U.K., European Union and Australia to set standards and discuss the challenges and opportunities presented by scaling up newborn genetic sequencing.”
“Would you have your baby’s genes sequenced at birth? A groundbreaking trial that used whole-genome sequencing to predict newborns’ future health, is starting to reveal the impact it has had on the whole family, seven years down the line.”
“Doctors in many places want to sequence and screen babies’ entire genomes at birth. In America there are projects to do just that at Boston Children’s Hospital, Columbia University and Rady Children’s Hospital in San Diego. A pioneering group at Harvard, known as BabySeq, has recently received money to expand its small-scale work to include … Continued
“Whole-genome sequencing may be the fastest way to diagnose rare complex diseases, but should it be incorporated into healthy newborn screening?” “We are missing the opportunity to address an increasing number of treatable conditions,” says G2P Dr. Robert Green.
The MGB Biobank returned actionable genetics results to 256 participants, 76.3 percent of whom were unaware that they carried a variant that put them at increased risk. The New York Times reports on this return of results process, outlining that some participants wanted to learn this information and others did not.
“Genomics England are poised to a launch a pilot project which will see the genomes of newborn babies sequenced on their very first day of life…In the USA, under a pilot project called BabySeq, a team co-led by Robert Green from Brigham and Women’s Hospital found that across 1,500 genes in 127 healthy and 32 … Continued
“Even before their baby is born, parents face some tough questions: Home birth or hospital? Cloth or disposable diapers? Breast, bottle, or both? But advances in genetic sequencing technology mean that parents will soon face yet another choice: whether to sequence their newborn’s DNA for an overview of the baby’s entire genome.”
“Published in the American Journal of Human Genetics on Monday, the study describes takeaways from an effort by BWH’s Genomes2People (G2P) program to disclose actionable genetic results to research participants who volunteered to contribute to the Mass General Brigham Biobank.”
The latest research from the BabySeq project shows that the delivery of genomic information from healthy newborns does not increase anxiety in parents.
This year, Erin Drake, MA, director of operations for G2P, and Tala Berro, MS, CGC, a genetic counselor and project manager, helped launch the G2P BIPOC internship program in recognition of the importance of diversity not only in clinical trials but also in research teams. Research trainees Soha Mohammed, Kopika Kuhathaas and Shardae Williams share … Continued
“Medical researchers in Boston are helping sign up one million volunteers for a first-of-its-kind study [The All of Us Research Program] examining the link between genes and our health. Researchers are actively recruiting volunteers of different races and ethnicities to ensure that the study reflects the diversity of the United States.”
Genomic testing for Baby Cora, a participant of The BabySeq Project, revealed a disorder that might otherwise have gone undetected through traditional newborn screening. “Cora’s case illustrates the promise of sequencing the entire genomes of newborns: uncovering a bounty of genetic information that could identify infants needing treatment and improve health later in life…Genomics England … Continued
“We have now shown that this information can be medically beneficial through early intervention and is not disruptive to the parent-infant relationship, and our ongoing analysis is measuring economic effects of genome sequencing. This type of research is critical to determine best practices for preventive genomic healthcare throughout the lifespan.” – Robert Green
“Researchers examined how conducting genome sequencing on newborns can impact family dynamics.”
“When parents were surveyed about measures like how well they bonded with their children, their levels of distress, and even the parents’ relationships with one another, there were no meaningful differences for parents whose children had their genomes sequenced compared to those whose children underwent standard newborn screening.”
“Researchers studying the psychosocial effect of newborn genomic sequencing on families in the BabySeq project have found that there was no persistent negative psychosocial harm in families who received such sequencing, nor among those who received a monogenic disease risk finding for their infants.”
“Robert Green, MD, MPH, of the Division of Genetics, received a research grant from the National Institutes of Health (NIH) to fund The BabySeq Project: Phase II, also known as BabySeq2, the continuation of a project to study genome sequencing in newborns.”
“Should people who volunteer for genomic studies be told about unrelated disease mutations that turn up in their sequence data?”
ZARA launches its first tribute collection, featuring iconic photographs by legendary image maker Peter Lindbergh. 100% of proceeds from this limited edition series curated by Fabien Baron will be donated to The Franca Sozzani Fund for Preventive Genomics, supporting the Global BabySeq Project in collaboration with Brigham and Women’s Hospital and Harvard Medical School.