Background The BabySeq Project: Phase I was a first-of-its-kind randomized clinical trial designed to measure the utility of using genomic sequencing in routine newborn care. The concept for this project is built off of the existing newborn screening program, an important public health initiative. All newborns born in the U.S. receive a heel stick blood … Continued
Head start: The promise of universal newborn sequencing
Illumina Genomics Forum
The Illumina Genomics Forum is Illumina’s premier global event advancing the positive impact of genomic health. G2P Director Dr. Robert Green spoke alongside Ryan Taft on building the evidence base for offering comprehensive sequencing for every child at birth.
The path to universal newborn sequencing
International Conference on Newborn Sequencing (ICoNS)
At the inaugural International Conference on Newborn Sequencing, researchers from eight studies across the world outlined their plans, goals, and results to date for their newborn sequencing initiatives. The BabySeq Project led by Robert Green at Brigham and Women’s Hospital, the Broad Institute and Harvard Medical School was the first randomized clinical trial designed to … Continued
Genomic newborn screening studies around the world begin to take baby steps
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.
Blood from a baby at birth can be gene sequenced to prevent diseases
“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.”
Revealing the hidden impact of whole-genome sequencing for newborns
“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.”
Precision Medicine World Conference: The path to universal newborn sequencing and disease prevention
Precision Medicine World Conference
PMWC, the “Precision Medicine World Conference” is the largest & original annual conference dedicated to precision medicine. At this year’s PMWC, G2P director Dr. Robert C. Green gave a talk on the path to universal newborn sequencing and disease prevention.
Full-genome screening for newborn babies is now on the cards
“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
University of Chicago Medicine, Pediatrics Grand Rounds: The 2nd Annual William Meadow Bioethics Debate
University of Chicago Medicine, Pediatrics Grand Rounds
In this debate hosted by the University of Chicago School of Medicine, Dr. Lainie Ross and Dr. Robert C. Green both respond to the question “should all newborns have their genomes sequenced at birth?”
Baby’s first genome
“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.
Newborn sequencing and prevention of rare diseases: A new challenge
World Medical Innovation Forum
Dr. Robert C. Green presents at the World Medical Innovation Forum on “Newborn Sequencing and Prevention of Rare Diseases: A New Public Health and Biopharma Challenge.”
Genomics in Health Implementation Forum newborn sequencing virtual workshop
Genomics in Health Implementation Forum
On April 5th, 2022, initiatives from around the globe will virtually convene for a meeting of the Genomics in Health Implementation Forum (GHIF). This focused workshop aims to share the status of international efforts establishing genomic newborn screening programs and identify areas for engagement with GA4GH Work Streams.
BabySeq newborn screening project aims for increased diversity in second phase
“BabySeq, the next-generation sequencing-based universal screening program for newborns, is gearing up for a second, expanded study. The lead researchers said they want the four-year, $5.1 million grant to help address a lack of diversity in the first cohort.”
The UK’s plan to sequence the genomes of 200,000 newborn babies
“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
Genomic screening of healthy newborns gets more popular
“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.”
Amy McGuire on newborn sequencing
The Beagle Has Landed
“Amy McGuire [Co-PI of BabySeq] joins Laura Hercher on “The Beagle Has Landed” to discuss BabySeq and the high-risk, high-reward prospect of making genome sequencing of newborns routine. After a preliminary study many years in the making, Amy is here to assure us of one thing: ‘what we’re doing isn’t Gattaca.’ Also, the take-home message: … Continued
Study finds parents not perturbed by newborns’ exome results
The latest research from the BabySeq project shows that the delivery of genomic information from healthy newborns does not increase anxiety in parents.
Newborn genome sequencing: The next step in public health?
For the first time in history, we can treat the underlying cause of some genetic diseases — if we catch them early enough. What does this mean for public health?
Dr. Robert Green: A liberating vision of the future
The G Word
“We have a wild card here that is changing the risk-benefit equation for all babies in order to detect these rare cases.”
Sequencing every newborn’s genome to detect diseases faces ethical and practical obstacles, but the United Kingdom is pushing ahead with a major test
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
Study finds genomic sequencing of healthy newborns does not disrupt family dynamics
“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
Determining family impact of genome sequencing on newborns
Health IT Analytics
“Researchers examined how conducting genome sequencing on newborns can impact family dynamics.”
Can parents handle finding out their newborn is at higher risk of certain diseases? A small study suggests they can
“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.”
Sequencing of newborns does not create negative psychosocial effect on families, study finds
“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.”
Green receives NIH research grant for BabySeq2
Brigham Publications: Awards, Honors & Grants
“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.”
Robert Green: Newborn sequencing is the goal here in the U.S.
“If you go to a scientific meeting, even with the greatest critics, and you ask, how many people in this audience believe that your entire genome will be part of your everyday medical care in fifty years, every person will raise their hand. So the only questions we’re debating are: how do we get there, … Continued
Gene-targeted therapies: Early diagnosis and equitable delivery
This free 3 day NIH sponsored conference brings academia, industry, and government together to accelerate access to gene-targeted therapies. G2P’s Dr. Robert Green co-chairs the planning committee and will be one of the speakers opening the conference on June 3 as well as speaking about BabySeq on June 10.
Newborn sequencing in genomic medicine and public health (NSIGHT)
Advisory Committee on Heritable Disorders in Newborns and Children
Dr. Robert C. Green gives talk at the December 2020 Meeting of the Advisory Committee on Heritable Disorders in Newborns and Children on “Newborn Sequencing in Genomic Medicine and Public Health (NSIGHT).”
Genomic sequencing to screen newborns raises more false alarms than routine blood tests
In this study led by UCSF researchers, exome sequencing was found to produce more false positives and false negatives for inherited metabolic disorders than the standard blood testing conducted in newborns. G2P’s Dr. Robert Green, co-leader of the BabySeq Project, speaks to the possibility “that the most comprehensive screening for newborns will be some combination … Continued
BabySeq: Partial Biotinidase Deficiency
Meet BabySeq participants, Cora and her mom. Through our NIH-funded BabySeq Project, Cora was diagnosed with partial biotinidase deficiency, which was missed on her traditional newborn screening test. Listen to their story.
23 and baby
We now have the ability to screen for thousands of genetic diseases in newborns. That may not always be the healthy thing to do.
The case for preventive genomics: BabySeq
NSIGHT Steering Committee
Dr. Robert C. Green presents on the case for preventive genomics: BabySeq at the 2019 NSIGHT Steering Committee Meeting.
21st Future of Health Technology Summit: Preventive genomics now!
Future of Health Technology Institute
Preventive Genomics Now! Robert Green M.D., MPH, Professor of Medicine (Genetics) Director, Genomes2People Research Program, Brigham and Women’s Hospital, Broad Institute, at 21st Future of Health Technology Summit at MIT Bartos Theatre produced by Renata Bushko Founder Future of Health Technology Institute FHTI since 1995.
Sharing, caring, and the complications of sequencing a baby’s genome
When a newborn’s genome is sequenced, should some results be withheld?
DNA testing could save young lives through early intervention
The Harvard Gazette
Pediatric oncologist Dr. Lisa Diller, the Lillian Gollay Knafel Fellow at the Radcliffe Institute for Advanced Study, is exploring genetic testing in newborns that could help them escape severe health consequences.
Is it too soon to consider genome sequencing for newborns?
Parents and clinicians have their own ideas about newborn genome sequencing. Dr. Robert Green, principal investigator of the BabySeq Project, shares a detailed analysis of the results from the study and his thoughts on the utility of genomic sequencing for newborns in clinical care.
Genetic screening for newborns yields some answers, more questions
Researchers analyzed nearly 5,000 genes looking for the risk of diseases and found that almost 10 percent of babies tested were at risk for a condition that could be treated early.
Genetically sequencing healthy babies yielded surprising results
As principal investigator on the BabySeq Project, Dr. Robert Green shares the findings from the project along with discussion on the expectations and benefits of sequencing healthy babies. Green states, “Suddenly the information available in the genome of even an apparently healthy individual is looking more robust, and the prospect of preventive genomics is looking … Continued
Inside AJHG: A chat with Alan Beggs
American Society of Human Genetics
In this American Journal of Human Genetics interview, Alan Beggs discusses his recently published paper, Interpretation of Genomic Sequencing Results in Healthy and Ill Newborns: Results from the BabySeq Project.
Baby sequencing steps
Nature Reviews Genetics
In the BabySeq Study, a total of 88% of sequenced neonates had carrier status for one or more rare genetic variants known to be associated with recessive diseases.
Baby DNA: Boston researchers find childhood genetic risks in 9 percent of newborns
Getting out in front of disease is the ultimate goal of DNA screening like the BabySeq project, says Dr. Robert Green, its joint director and a Harvard Medical School professor.
Babies’ genomes identify risks overlooked by newborn screens
A trial called BabySeq, in which researchers performed genomic sequencing on 159 newborns, identified children susceptible to diseases that regular screening doesn’t look for.
A deep dive into newborns’ DNA can reveal potential disease risks — but is the testing worth it?
Newborn DNA testing offers several potential benefits. Mainly, it could expand the number of conditions clinicians can test for before a child starts showing symptoms, giving them and patients a head start in handling the diseases.
Almost 1 in 10 newborn babies have a genetic disorder that could be treated to prevent poor health in adulthood
Scientists were stunned by the number of babies with unanticipated genetic findings that could lead to disease prevention in the future.
Newborn genomic sequencing detects unanticipated disease risk factors
Brigham Women's Hospital
Press Brief: The BabySeq project reports that out of the 159 newborns that were randomized to receive genomic sequencing, 15 were found to have a genetic variant for which there was a strong evidence of increased risk of a disorder that presents or is clinically manageable during childhood.
More than 10% of healthy people have monogenic risk variants
Robert Green, MD, MPH, the projects’ principal investigator suggests “These results are unexpected and exciting, suggesting that if we examine enough well-established, disease-associated genes, we will unearth monogenic risk variants in more than 10 percent of purportedly healthy individuals.”
BabySeq, MedSeq projects reveal how many people carry genetic risk variants for rare diseases
Brigham Women's Hospital
More information on newborn and adult sequencing studies unveiled at the 2018 American Society for Human Genetics Meeting in San Diego, CA. Two projects in which healthy individuals have had their genomes sequenced have revealed that searching for unanticipated genetic results in newborns and adults can unearth far more variants associated with diseases than previously thought, … Continued
The new, improved world of infant care
Wall Street Journal
“Sequencing at birth could provide a template—a book of life, if you will —to predict conditions or decide what medications to use for an entire lifetime,” says Robert Green, a medical geneticist at Brigham and Women’s and professor at Harvard Medical School who is co-leading the study.
Families declining enrollment in BabySeq cite lack of interest in research, logistical challenges
Only about 7 percent of families approached to take part in the BabySeq Project of Brigham Women’s Hospital and Boston Children’s Hospital eventually enrolled, with many citing a lack of interest in research, study logistics, and privacy concerns as reasons for declining to participate.
Would you check your baby’s DNA for free? Most parents in Boston study say ‘no, thanks’
Listen to WBUR’s radio segment on the BabySeq Project and one of its publications.
Barriers to entry: Study explores why parents declined genome sequencing of their newborns
Brigham Women's Hospital
Press Brief: The BabySeq Project reports that although more than 80 percent of approached mothers and fathers declined an offer for free genomic sequencing of their newborn, more than half of those parents were not interested in any research participation.
Genomic sequencing for newborns: Are parents receptive?
Boston Children's Hospital
Casie Genetti, MS, CGC, a licensed genetic counselor with the Manton Center for Orphan Disease Research at Boston Children’s Hospital is first author of a recently published paper on the BabySeq Project and author of this blog about parents’ receptiveness to genome sequencing.
Hastings report decries sequencing healthy children as BabySeq Projects continue to collect data
“According to Green, the Hastings report tries to take a broad view and is well done and well resourced. But he questioned whether recommendations of this type may be premature, considering that the research arms of NSIGHT are still early in the process of collecting, analyzing, and reporting their data.”
Ars on your lunch break: the consequences of a government genetic database
The third and final interview conducted with Dr. Robert Green about specific circumstances that could arise from genetic sequencing starting from infancy.
HBO’s VICE News reports on the BabySeq Project
HBO VICE News
Follow new parents Katherine and Jason as they meet with Genomes2People Genetic Counselors to learn about their baby boy’s genome sequencing results as part of our BabySeq Project.
Would you have your newborn genetically tested?
Dr. Robert C. Green talks about The BabySeq Project, the world’s first study of genetically sequencing newborns, and how genetic information can influence one’s medical care beginning from birth.
DNA scan for infants raise questions of privacy and discrimination
CBS This Morning
Genomic testing for Baby Cora, a participant of The BabySeq Project, revealed a disorder that might otherwise have gone undetected until life-long health issues presented themselves.
Pick the right controversy- Robert Green
Front Line Genomics
Everyone talks about generating the clinical utility data necessary to integrate genomics into healthcare, but no one has taken this to heart more, or generated more of it, than Dr. Robert Green.
Baby genome sequencing for sale in China
MIT Technology Review
“The idea of finding a risk in their beautiful baby of something that might or might not happen is terrifying or repugnant,” he says. “But other types of people are information seekers.”
Genetic privacy concerns are on the rise for families and researchers
Dr. Robert Green discusses genetic privacy concerns and questions about whole genome sequencing that have arisen from parents whose children are participating in the BabySeq project.
Lire l’avenir de dans ses genes
“Les parents, grands curieux, seraient même fous des données génomiques!”
Research rumble: A communication battle of the science stars
Brigham Clinical and Research News
The project has two aims: One is to evaluate the risks and benefits of genome sequencing in healthy and sick infants, with the goal of developing evidence to support guidelines for use of this technology in newborn screening or care. The second objective is to study parents’ thoughts and feelings about genetic testing, as well … Continued
Doctors testing genome sequencing to determine baby’s future health
Gaining information by getting your DNA sequenced on what diseases you have risks for and can take preventative measures based on this information
Full genome sequencing for newborns raises questions
“We are moving to a world where the technology will get so good and the cost will get so low that it will be very appealing to apply sequencing to not only sick people but well people,” says geneticist Robert C. Green.
Are you ready to explore your baby’s genome?
Brigham Women's Hospital
“Simply putting together all the pieces to design these complicated research projects is an ambitious undertaking. But it is essential that we find ways to rigorously measure the clinical utility of new technologies so that we can apply them responsibly, and that is the focus of the BabySeq Project, and of the other NSIGHT projects.”
Three parent babies’ may be headed here
In-vitro fertilization, above, that uses DNA from two mothers to prevent some serious diseases has been approved in Britain, and Dr. Robert Green, a geneticist at Brigham and Women’s Hospital, says the U.S. will be pressed to follow suit.
Why scientists are sequencing newborns’ genomes
Forbes highlights the work of the BabySeq project by speaking with Laura Stetson, a mother who enrolled her daughter in the research program. By sequencing their daughter’s genome, doctors were able to quickly combat the daughters biodeficiency disease that was not caught during the standard heel stick screening.
Would you want to know the secrets hidden in your baby’s genes?
Conducting whole-exome sequencing on newborn babies during the BabySeq project highlighted important findings on how it would affect parents. While some were willing to know the information that was coded in their baby’s genes, many were resistant to this idea because of public policy and possible insurance mishaps.
Many parents reluctant to test newborn DNA for disease risk
A family that had participated in the BabySeq project shares their experiences about getting their baby’s full genome test results back that showed a mutation in the elastin proteins (elastin helps heart muscles bend and stretch). The father of the baby states “.. I think the biggest regret would have been had something happened down … Continued
BabySeq: Early results of newborn genetic sequencing are mixed
Boston Children's Hospital
A general overview of BabySeq and its findings, including a detailed analysis of the risks and benefits of newborn sequencing for the future.
Infant DNA sequencing finds genetic disorders that standard testing misses
Highlighting the story of a family who participated in the BabySeq study that detected their newborn infants partial biotinidase deficiency. Shawn Fayer, the project manager of BabySeq and a licensed genetic counselor stated, ” Symptoms would likely have appeared if the child had become sick from something else, which makes it very difficult to diagnose. … Continued
Q&A: Sequencing Newborns
Dr. Robert Green sits down to discuss the results of a participating family in the BabySeq project where a BRCA2 mutation was found in a baby boy and how the situation was approached to tell the family since this directly affected either one or both of the parents.
Surprisingly few new parents enlist in study to have baby’s genome sequenced
Green’s team plans to study whether knowing about such mutations is beneficial for the family in the long run, or results in unnecessary anxiety and tests.
These parents don’t want to know what’s in their baby’s DNA
The idea of newborn sequencing may have been initially inviting to parents who were expecting healthy children, but after learning of all the adverse effects that lead after, many decided to not follow through as research participants.
Will babies be better off if we know their genes?
“An ongoing clinical trial at Brigham and Women’s Hospital and Boston Children’s Hospital, called BabySeq, is trying to untangle some basic questions about the benefits and harms of gene sequencing. Does it improve health? Does it lead to lots of excessive medical testing? Does it cause harm?”
3-Parent baby troubles doctors
A baby with three genetic parents is the first-ever born using a breakthrough technique that would protect infants from hereditary diseases
Genome sequencing for healthy people: Is it time?
The Huffington Post
A blog post authored by Dr. Robert Green discussing the benefits and challenges that people and health professionals are faced with when dealing with genetic testing and screening. Here, he addresses ethical issues and potential complications alongside beneficial factors that deal genome testing.
New study tests newborns’ DNA for hereditary conditions
A family who participated in the BabySeq project at Brigham and Women’s is for genetic testing, as they wanted to be prepared, even if the test came back to show that their child would develop a life altering disease.
Study: Mass. women are more apt to end Down syndrome pregnancies
With advances in prenatal screenings in the Bay Area, studies have shown that more women are deciding to end Down syndrome pregnancies.
BabySeq researcher presents initial findings at ACMG
The principal investigators on the BabySeq project were trying to determine what information would be the most pertinent and helpful for both patients and physicians to know from whole-exome sequencing in the initial stages of the project. Their findings within the first couple of patients were quite interesting and they are excited to continue with … Continued
Exponential Medicine conference and the “Last Mile” problem in genomic medicine
The big question is how to make genomic information useful to patients and medical practitioners; Genomes2People is looking for answers through the MedSeq and BabySeq projects, among others.
Two Boston hospitals to sequence genome of newborns for the first time ever
“For the first time ever doctors at Brigham & Women’s and Boston Children’s Hospital are sequencing the genome of newborns. This allows doctors to decode the DNA and look for the possibility of future diseases and conditions.”
Come starò da grande: così la lettura del DNA regalerà ai neonati una vita piu sana
Should babies have their genome sequenced?
MIT Technology Review
The BabySeq project in Boston at Brigham and Women’s Hospital, led by Dr. Robert Green, has begun collecting data to quantify the risks and benefits of DNA sequencing at birth.
Newborn screening collides with privacy fears
Medical privacy and concert concerns are being addresses with newborn sequencing advances. It is predicted that there will be many changes to policy in the coming years.
We must take baby steps into newborn genome sequencing
A newborn challenge
Genome sequencing in babies to begin as part of study
Wall Street Journal
Most new parents might welcome having baby’s genome sequenced
Los Angeles Times
Genome sequencing for newborns: What do new parents think?
Brigham Women's Hospital
A study published this week in Genetics in Medicine is the first to explore new parents’ attitudes toward newborn genomic testing. The findings suggest that if newborn genomic testing becomes available, there would be robust interest among new parents, regardless of their demographic background.
Study finds support for newborn genetic testing among parents
New parents favor in-depth genetic testing, survey finds
U.S. News & World Report
Would you sequence the genome of your newborn? A majority of Mass. parents say yes
Does your genome belong to your family, too?
Baby DNA analysis ushers in brave new world of treatment
New study will explore DNA testing in newborns
Doctors at Brigham and Women’s Hospital and Boston Children’s Hospital are developing a new clinical trial to look at the effects of genome sequencing in newborn babies.
Inside 23andMe founder Anne Wojcicki’s $99 DNA revolution
Researchers to explore promise, risks of sequencing newborns’ DNA
Brigham and Women’s, Boston Children’s to evaluate benefits and risks of infant clinical sequencing
Boston researchers to sequence newborn babies’ DNA
NPR - WBUR Boston
Brigham and Women’s Hospital awarded $6-million to study genome sequencing in newborns
Brigham Women's Hospital
“This first-of-its-kind study will accelerate the use of genomics in clinical pediatric medicine by creating and safely testing novel methods for integrating sequencing into the care of newborns. We will implement and study a futuristic goal: that genomic information examined shortly after birth can serve as a resource throughout infancy and childhood to inform clinical … Continued
Growing up genomic: What happens when you know all a baby’s genes?
WBUR's Common Health: Reform and Reality
Boston researchers to study genome sequencing in newborns
Boston-area team to study DNA sequencing in newborns
The Boston Globe
NIH awards up to $25M over five years to teams testing genome sequencing in newborn screening
A tangled debate centers on newborns’ DNA
The Boston Globe
Video description of pilot proposal for newborn genomic sequencing
BWH Public Affairs