It's 1960 in Providence, Rhode Island. A pregnant mother walks into the Providence Lying-In Hospital for a checkup. She signs in at the front desk and turns to take a seat in the waiting room. She doesn't know it yet, but this tiny decision has big implications. That's because a team of researchers has marked a handful of chairs in the room.
If you happened to sit in one of the marked chairs, you would be contacted and asked to participate in the study. If you said yes, you would go on to provide information about yourself and your child that is still being used today. It's part of a research project called the New England Family Study.
Because of its unique design, the New England Family Study has been able to contribute to research across a huge range of topics: the benefits of vaccinations, the dangers of some medications during pregnancy, and it's informed our understanding of diseases like asthma, depression, Alzheimer's and cancer.
Steve Buka, professor of epidemiology at Brown and the principal investigator of the New England Family Study, says, “There really is no other study like it in the world.”
For the November episode of Humans in Public Health, Megan Hall spoke with Professor Buka about the one-of-a-kind long-term study that is tracing the development of thousands of participants from birth to old age.
Listen to the full conversation
The New England Family Study originated in the 1950s. How did it work? What were its goals?
Buka: The goals were to understand problems related to brain and spinal cord development that show up in childhood. Between 1959 and 1966, researchers enrolled more than 17,000 infants and their mothers at one hospital in Providence and one in Boston.
The children themselves were then seen for the first seven years of their lives. Three or four times in the first year, then the third year, fifth year, seventh year.
And by seven years later, over 80% of the babies were seen and visited. So over a seven-year period of time, only 20% of the people moved away or said, "I'm no longer interested in participating in this study." And this was a real burden on the families. They had to get in their car, and undergo two or three hours assessments, and 80% of the people did it.
It is inconceivable in 2026. If we started a study like this now in 2020, and six years later wanted to bring people back in to see them, we'd be happy if 20% participated! That's a bit of an exaggeration, but the level of engagement is phenomenal. It was a different time.
And the research itself was really thorough, too. The initial researchers collected data about the mothers' health during their pregnancies and surveyed them about their habits and substance use. They even took blood samples and preserved them.
And even more information was collected about their babies and their births. How long the woman was in labor, whether forceps were used, whether oxygen was administered, what medications may have been used.
Once the baby was born, lots of measurements of the child, height, weight, skin color, whether the mother was breastfeeding, whether there were nutritional supplements, a neurological exam of the child.
And then neurologists and pediatricians and psychologists underwent a standard sort of well-child check, but with a lot more probing of the issues that they were looking for: the ability to track a sound or a light for an eight-month baby, cognitive development and school readiness for a four-year-old, any health concerns that came up were noted.
It is an incredible amount of data to gather. And back then, we didn't have CDs or hard drives or USBs. It was on little old IBM cards that people carried around. It was a different world.
So the researchers collected all of this data between 1959 and 1973, when the last children in the study were turning seven?
Yes, and then the National Institutes of Health, who sponsored this study, said, "Our job is done. We're done with data collection. Thank you all for participating."
This is where you enter the story. A few years later, in the mid 1970s, you were a student at Brown and a disc jockey at WBRU.
I was doing jazz. Jazz after hours. I was also a student of a very well-known psychologist named Professor Lewis Lipset, since passed away, and Professor Lipset did the early part of this study.
Then in the early 1980s, you got a call.
Lipset and this psychiatric epidemiologist, whose name was Dr. Ming Tsuang, said, “How are they doing now?” Let's find a student who can help us. I was a doctoral student at Harvard at the time, and they said, "Come on back to Brown University, Steve Buka," and that's how it began.
So the federal government just dropped this, and then years later you picked it back up?
Exactly that. The original study was to understand these neurodevelopmental problems of childhood, and their task was completed. That original study was called the Collaborative Perinatal Project, perinatal meaning around birth, and they wanted to know what were the conditions around birth, that is, during pregnancy and during labor and delivery, and how those related to these neurological problems. Their job was done.
But you and your advisors saw the potential in all of this data.
Yes. In the 1980s, we did another round of research, reaching back out to the children who were now in their teens and early 20s. We asked questions about how cognitive development as a baby could impact someone's chances of ending up in the court system as a teen. We also asked how complications during pregnancy could relate to psychiatric disorders in young adults. The studies were successful.
Again, the participation rate, the willingness of these people, who had not been seen since age seven, and who may not have even recalled being seen at age seven, when we called them up 10 years later and said, "You were in this study. We'd like to know how you're doing now," they said, "Terrific. How can I help?"
So that was the beginning of what we then renamed the New England Family Studies. We've done probably 30 large studies since that time, some of them conducted at Harvard University with the babies born in Boston; some of them conducted at Brown University with the babies born in Providence.
And so today, you and your colleagues can do research by searching for connections between the old data and how these participants’ lives actually turned out. Do you reach back out to the participants, who have all turned 60 by this point?
As I said, there were 17,000 babies, and it would be a huge amount of money to continue to follow all 17,000. We've never done that. We have seen in adulthood approximately 5,000 of the 17,000 babies, and we focus on conditions, exposures, experiences that we're concerned with.
So we pick children who've had unique experiences. For instance, right now some of our work is focused on these forever chemicals, PFAS is what they're known as.
We've selected two groups of children: those who were exposed to high levels of PFAS and those who were not. We're now following them into their 60s to determine whether their risk of obesity may be linked to their mothers' exposure to these chemicals during pregnancy. Specifically, we're investigating whether PFAS exposure during pregnancy alters the developing fetus's metabolism in ways that predispose the child to gain more weight during childhood and potentially increase their risk of obesity later in life. To determine whether part of the reason why people are experiencing obesity later on has to do with the chemicals that their mother was exposed to in pregnancy.
You also looked at participants who were born underweight and then quickly gained weight. Can you explain your findings?
Research has shown that infants like this are at an increased risk of heart disease when they're older. And it turns out their hearts don't develop the same way that other babies' hearts do.
A collaborator in Spain has identified the actual molecules in pregnancy that triggers the alteration of the heart to put these infants 60, 70 years later at higher risk for heart disease, and we're trying to confirm that. So we have banked maternal serums from these pregnant women, from the 1960s. There are 800,000 vials of this serum at NIH.
So you still have the actual blood samples from the mothers from more than 60 years ago?
Yes. We’re hoping to bring the study participants into clinical facilities and run some tests. We take echocardiograms of their hearts. We confirm who actually has altered hearts, and then we're going to go back to the serum that has been stored for 60 years and see, in fact, if these molecules are more common in the children who have heart problems.
Unfortunately, that's not going to help the 60-year-old generous soul who participates in our study, but you can bet it's going to help their grandchildren because we believe that a whole generation around the world of women who are experiencing restrictions in the growth of their fetus, we may be able to give them medications which counter this molecule so that their children will be born with normal hearts.
So you started this as a doctoral student, and now it's 45 years later. How does it feel to work on a project for basically your entire academic career?
It's phenomenal. I'm really fortunate that I had the opportunity to work on this study. I also feel a great honor to sort of be the steward of the generosity of these participants. They've contributed huge amounts of time, as I've told you, and that spirit of goodwill and that sense of giving back to others, is further reflected by the generosity of the participants who are now age 60 themselves. So I just feel fortunate to be one of the beneficiaries of the kindness and generosity and goodwill of these multiple generations of New England Family Study participants.
A lot of time has passed since the early years of the study. Is it a challenge to get back in touch with participants?
One of the striking facts that not everyone may know is there's a fair amount of mortality by age 60 or 65. The listeners might want to do a thought exercise: What proportion of 1,000 babies born in 1960 would be alive today, and the answer is only about 75% of them. About 25% of people will have died before age 65. Even that, we're interested to know what their cause of death is.
It must also be a challenge to reconnect with participants, given the amount of phishing scams and spam calls we get today.
Yes, somebody calls and says, ‘Hi, you may not remember us, but 50 years ago, you were in this study when you were seven.’ They have good reason not to want to trust us.
How do you make your pitch to original participants?
We say: We're a dedicated group of New Englanders who really care about you, and it's because of your participation that this great science can go forward. The people who do participate often tell us, "This is one of the more meaningful things of my life. The fact that I, a kid who was born in Providence or in Boston in 1963, have been able to help change the lives of millions of people around the world is phenomenal."
That doesn’t sound like a standard relationship between researcher and participants.
Increasingly, we're trying to tailor our research to meet the needs and interests of our participants. Traditionally, we design a study, determine what we want to investigate, and then invite people to come in and complete the procedures we've outlined.
But participants often have their own concerns. Someone might say, "My family has a history of Alzheimer's, and I'm worried about my risk.” Or, "My family has a history of breast cancer, and I'd like to better understand my risk."
So we're moving toward offering a menu of the studies we're conducting or planning, allowing people to learn about the research and volunteer for the particular studies that interest them. That way, we're not only advancing our research but also addressing questions that matter to the participants themselves.
Scientifically, it may be easiest to say, "I need these 1,000 people for this particular study." But that's not necessarily how people want to participate in research. We want to move away from that approach and build more of a partnership with the adult members of the cohort, involving them in a way that reflects their interests and concerns.
It sounds like you're saying, "We want you to feel like you're part of the research study” almost, that you're getting something out of it. You're not just a subject.
Very much. We only refer to the members of the cohort as participants, not as subjects. We never do. And they're more members of a New England Family Study. Their parents participated to really be part of the enterprise. They've continued as part of the enterprise, and we take that very seriously. You know, we send annual newsletters wishing them well from New England and updating participants on what we've been learning, and we try to make it a New England family affair.
You were born in the '60s in New England, so do you feel like these are your peers or you kind of grew up together?
I really do. So when we write those newsletters, they may be a little more chatty than people are expecting because I talk about the Celtics wins of the '60s and the Red Sox of the '70s and the Apex building and the Silver Top Diner here in Providence.
So not only being born in the Boston area, but having spent a lot of my teenage years in the Providence area, I feel a real affinity for this cohort. They are my peers.
As you said, 25% of the participants have likely died already. What happens as all the participants are gone? Does this study end?
I don't think the end is anywhere in sight. In fact, we've just reached an extraordinary milestone that we're very excited about: All of the babies in the original cohort have now turned 60. The last of the children recently reached that milestone, while some of the older participants are already 66. So everyone in the cohort is now over 60, which certainly means we're getting older, but there's still a lot of life ahead of us, and many more years of research to come.
And much of health concerns, as you know, take place in 60s, 70s, 80s. We're interested in cognitive decline. We're interested in Alzheimer's. We're interested in memory loss. We're interested in gait and falls and frailty. All of these are topics that we are going to get important new information about from the participants, with the participants right now. So rumors of our death are greatly exaggerated, and the cohort is at one of its real high points of scientific discovery.
As the cohort ages, we will send our condolence cards because they're dear members of our extended family that we care about, and eventually it will end as, as all things must.