They then began working with Birkbeck researchers to adapt it to answer more fundamental questions. Other species were also tested, including rats (which were additionally tested with a raised bridge) and kittens, which were several weeks old before they could be tested. I knew he was dead. From that day on, Karen and her sisters, Chris and Gail, say they never spoke Marks name again. It profoundly affected me., Rosemarie had committed 3-year-old Mark to Sonoma State Hospital, the largest institution for children in California. 6. Lederer told 60 Minutes that she wasnt shocked by the findings because "researchers have been using disabled children in experiments for over a century." 2023 Scientific American, a Division of Springer Nature America, Inc. Although incomplete, Karen found that her brother had suffered horribly before he died most likely as a result of the radiation experiment: The record indicated he had suffered from unusually high fevers the last six months of his life before dying of a seizure. The kittens, like the other species, showed a marked preference for the shallow side. By 1944 the medical team of the Manhattan Project, headed by Stafford Warren, concluded that a controlled experiment on humans was necessary. Oct. 7, 2011 -- Teaching the concepts of sharing and fairness is the goal of every kindergarten lesson plan, but babies as young as 15 months . But Dr. Fost says that a few decades ago, the situation was not nearly so rosy. Hungry or tired babies do not make for good experiments, so everything is carefully planned around meals and naps. We will provide updates on efforts to stop the madness of unproven medical tests and interventions, Contact: Vera Hassner Sharav 212-595-8974, 60 Minutes: A Dark Chapter In Medical History They were the raw material of medical research. Feb. 9, 2005. Over the ensuing years, frozen vials of the cells were flown to hundreds of laboratories across the world, WI-38 is now one of the oldest and most widely available cell lines on the planet. He lets out a gurgle, and moments later, a short cry. If they can focus their attention on a butterfly flying across the screen, and not get distracted by other things that are happening, then the butterfly keeps flying, so they get rewarded for controlling their attention, Jones says. Working with babies requires specialized kitparticularly for a laboratory that can see as many as 14 in a day. rat / chick / lamb / kitten. In the 1960s, researchers at the University of California began an experiment to study changes in blood pressure and blood flow. The mean systolic blood pressure was 7.1 cm Hg (range 5.8 to 9.5). Children have historically been the voiceless victims of medical research abuse - and the doctors and staff who abused them have almost never been held accountable - they are shielded by a whitewashed wall of silence. Chief among them is the requirement for informed consent. Swollen eyes, seizures, those things can fit in with radiation poisoning. Marks records contained another shock. This has, however, been investigated in several different ways. He would laugh or he would cry if he was unhappy., The childrens father, Bill Dal Molin, felt that Rosemarie was neglecting their three daughters, because of Mark. And how can we justify continuing to use them given the way they were obtained? That is the challenge embraced by scientists at the Babylab. Theresa Murphy showed 60 Minutes Wednesday the final resting place of 1,400 Sonoma State patients. One way to deal with these concerns is to involve the family in decisions about when and how their genetic information is used. The mimicry experiment is a prime example of the Babylab's mixed-methods approach. Karen notes that Swollen eyes, seizures, those things can fit in with radiation poisoning. She also discovered that They took my brothers brain without consent, and the doctor, in his obituary it said that he had one of the largest brain collections, says Karen. Martin Rogers/Getty Images. One of the first to do so was Jean Piaget, a Swiss psychologist who used detailed observations of infants and older children to gain insight into how they understand the worldincluding, famously, by hiding an object to see whether infants try to find it. Gibson and Walk tested whether youngsters would crawl over an apparent cliff if the neonates did it could be assumed that the ability to see depth was not inborn. Susan Lederer, who teaches medical history at Yale University, and was a member of President Clintons Advisory Commission on Human Radiation Experiments, told 60 Minutes that the researchers and staff regarded the children as the raw material of medical research. When they died researchers acquired their brains, also without consent. But this period is also the most difficult to explore, because many of the standard tools of human neuroscience are useless: babies will not lie awake and still in an imaging machine, and they cannot answer questions or do as they are told. The Babylab kitchen hosts a bottle-warmer, and bathrooms are well stocked with wet-wipes. The laboratories, however, are largely empty and painted a dull battleship greya deliberate choice, because babies are easily distracted. For decades, the polio vaccine had been made in cells taken from monkey kidneys, some of which it was later discovered were infected with a virus, simian virus40 (SV40). The consistency of the results over a range of species including humans adds credibility to the findings. This means their use was never restricted, and scientists around the world were able to share them freely with colleagues. Deny it. There is a danger, they say, of children with mild versions of illnesses being treated needlessly and aggressively for more serious forms and suffering dire health consequences. Another reason WI-38 has become so ubiquitous is that a quirk of the American legal system at the time of its discovery: it wasnt possible to patent living things. As if frightening the life out of orphans wasn't bad enough, researchers at the . If they did not, this would support a nativist view that perceptual abilities are innate. As the legend of Flamels immortality spread, people began to report seeing him out and about. The independent variable (IV) was whether the infant was called by its mother from the . But very little is known about how, and when, it develops. From the start, Johnson wanted to take a more high-tech approach to investigating brain development than were the handful of other similar labs. At the time, the hospital housed 3,500 children with diverse needs, from babies born with minor defects, like a cleft palate or a club foot, to children with epilepsy and Down syndrome. Then a young American scientist, Leonard Hayflick, made a discovery which shocked the world. This only explored the plasticity of infant perception, so the question of whether adult perception could adapt was not considered. The field is now becoming more sophisticated, thanks in part to the Birkbeck lab. Because cells are mortal individually, if you grow them in a petri dish, sooner or later they will stop dividing and die. In the early 1950s, Dr. Krugman, a former flight surgeon for the U.S. Army Air . Today it's still used to make the rubella vaccine part of Merck's measles, mumps and rubella (MMR) jab and Teva's adenovirus vaccine for the US military. But Johnson was more interested in human development, so after his PhD he took a research-scientist position in London to begin studying infants. Back in 2017, Hayflick asked Olshansky to quantify exactly how many lives the cells had spared until that point. Johnson's observation that young babies prefer direct eye contact is one such example; this sets them up to focus on socially relevant parts of their surroundings, which in turn enables them to learn about language and other social cues such as facial expressions. Lederer says using captive populations meant big money for medical researchers: It would even be an advantage in applying for grant money, because you dont have to go to the problem of recruiting subjects. In the case of Sonoma State, records show that when the study began, cerebral palsy admissions there jumped by 300 percent. The second experiment aimed to explore this possibility using animals. Dr. Lainie Friedman Ross, a pediatrician and medical ethicist at the University of Chicago, said: We dont know if they are medical conditions. It was November 1958. Thanks for reading Scientific American. This material is distributed without profit. One clinical trial at the Babylab already suggests that early intervention can have an effect. He was paralysed by the virus in 1952 at the age of six. Researchers from other fields come down here and are often horrified at the lack of controls, says Tucker. Jones is currently piloting 'gaze-contingent' tasks, which enable babies to become active participants in experiments. Though not complete, records did show that Mark Dal Molin suffered unusually high fevers the last six months of his life before dying of a seizure. To assess these deeper areas, researchers need a technique such as functional magnetic resonance imaging (fMRI), which has yielded huge insight into the adult brain. Just keep in mind that they are a critical link in the chain, in the development of viral vaccines.. These ethical transgressions have become even more problematic with the advent ofaffordable genetic sequencing. Federal inspectors uncovered evidence that thalidomide, which was to be sold under the brand name Kevadon, was passed among doctors and family members with seemingly little awareness that it was . In the 1960s, the polio vaccine used in the United States had been hit by calamity. Whether the introduction of the virus had any medical consequences is still under question as is the possibility that it is now spreading to people who were never vaccinated. The researchers used 113 newborns ranging in age from one hour to three days old as test subjects. But she found a document that showed that her brother had been part of the study, assigned Specimen #8732. For his PhD project in the 1980s, he investigated whether day-old chicks formed social attachments to any object placed in their pen, or if they preferred ones that resembled a mother hen. But their use has also created a moral dilemma. School for Scandal: In addition to conducting hepatitis experiments, Willowbrook's staff physically abused residents. Those who want to screen the infants offer no known treatment for all but 5 of the conditions to be screened, and no medically justifiable rationale for screening. Giving parents the result, saying, Heres the mutation; we are not sure what the outcome will be, is better than not telling, said Sharon Terry, president and chief executive of the Genetic Alliance, an advocacy group for people with genetic disorders. In the 1960s, the polio vaccine used in the United States had been hit by calamity. But fMRI is highly sensitive to movement, so babies can be scanned only if they are sedated or asleep, which has severely limited the technique's use. One of these cells eventually turned into the cell line WI-38, which stands for Wistar Institute foetus 38. In fact, if you multiply the number of cells in the human body by the average time it takes for cells to reach the Hayflick limit, you end up with 120 years. In the mimicry study, the researchers want to see if the babies' brains show a similar pattern to those of adults who are mimicking others, which should help to explain if mimicry is partly innate. I never dreamed that in this country, they would do experimenting children. One document she also found showed that her brother had been part of the study, assigned Specimen #8732. Stratton (1897) and Kohler (1962) used complex optical apparatus to change their view of the world, e.g. Imagine puncturing someones spinal cord, drawing fluid out and putting a foreign substance in there. She is participating in a study to assess the development of mimicry in babies: the unconscious tendency of people to frown when someone else frowns, or smile when they smile. In 1946, Dr. Benjamin Spock (no relation to Dr. Spock of Star Trek) authored Baby and Child Care, the international bestseller, which . In fact, even in cases where informed consent is obtained, there is still some debate about the ethics of using human tissue because genetic material is familial by nature, and this decision could potentially affect many other relatives other than the one who provided it. If you liked this story,sign up for the weekly bbc.com features newsletter, called The Essential List. Karen discovered that patients in the study were put through painful procedures like the pneumoencelphalogram, in which air is injected into the brain before a series of X-rays. Piaget went on to develop the theory that babies are essentially born as blank slates, but possess the machinery that motivates them to explore the world and allows them to assimilate knowledge. I believe we are now at a unique point of convergence between this basic science and the clinical science, he says. Other, less dramatic, changes to perception can be induced by shifting the field of view slightly to one side then testing depth perception, eg by the ability to point accurately to a target. They buried their grief, grew up and had families of their own. As his attention flits between the apparently random objects on the screen, the reflected infrared light allows psychologist Emily Joneswho directs the projectto gauge precisely what he is looking at, and in which order. There is a well-worn adage in show business that you should never work with children or animals. Even Isaac Newton, widely regarded as one of the most brilliant minds who ever lived, believed the tales. Experiments with goggles. The trip was worth it, she says, because she was curious to learn what goes on at the Babylab. File on Four, BBC Radio 4. Happy baby In this light, the cell line is considered by some as potentially representing aprivacy risk. In the words of Murdina . Bender's reports on her LSD experiments give no indication of whether the parents . Handicapped children. Unless their families claimed them, the children ended up in a community grave with the ashes of 500 other people, or buried in a empty field without a headstone to mark their passing. If I called her right now, shed deny it., Administrator Theresa Murphy has worked at Sonoma State for 30 years. An infant may look longer in order to relate the event to what it already knows, says Kagan. Would going ahead with the full list of tests result in more good than harm, physically and emotionally? It is not known whether they are associated with a disease or, if so, what the effects will be. Lederer said that using captive populations meant big money for medical researchers: It would even be an advantage in applying for grant money, because you dont have to go to the problem of recruiting subjects. In the case of Sonoma State, records show that when the study began, cerebral palsy admissions there jumped by 300 percent. The survival of any species requires that its members develop depth discrimination by the time they take up independent locomotion, whether this be at one day (the chick and the goat), three to four weeks (the rat and the cat) or six to 10 months (the human infant). Are its lines mainly curved or straight? I dont remember much after that. The American literary scholar Roger Shattuck called this kind of research study "The Forbidden Experiment" due to . Explore our digital archive back to 1845, including articles by more than 150 Nobel Prize winners. WI-38 was fundamental for the development of vaccines against polio, measles, mumps, rubella, varicella zoster (chicken pox), herpes zoster, adenovirus, rabies and Hepatitis A, as well as in the production of many early vaccines. The scientists here will closely monitor Ezra's brain and behaviour at visits over the next two and a half years. Hed laugh and giggle and kick, and just screech when he saw us. But by 3, Mark could neither walk nor talk, which meant his mother, Rosemarie, had to care for him. Out of curiosity, I started to read it, and they mentioned patients that were in state-run hospitals being used, says Karen. Though there hasnt been a single case of polio in the United States since 1979, a significant number of people are still thought to be living with the after-effects. Saul Mcleod, Ph.D., is a qualified psychology teacher with over 18 years experience of working in further and higher education. No. The WSJ reports that the parents of the CF positive babies who did not receive treatment . They were the raw material of medical research, says Susan Lederer, who teaches medical history at Yale University. In fact, she didnt even know about it until years later, when she was contacted by someone from the Karolinska Institute who was hoping for a more detailed medical history. But screening for PKU in the 1960s did not distinguish between true PKU and benign versions for whom treatment caused harm. Sample: 36 infants ranging in age from six months to 14 months. ", Yet, despite the absence of a medical justification for mass screening, "Its going like a house on fire. Indiscriminate screening is an ill-advised irresponsible policy. By tracking the flow of oxygenated blood, NIRS allows scientists to see which brain areas become more active in response to external events. But I just, this dread came into my heart, and I got my mom and I left. In 2014, Johnson received 2.3 million (US$3.5 million) from a trio of foundations to establish a toddler lab at Birkbeck, in which children aged 18 months to 3 or 4 years old will be attached to wireless forms of electroencephalography (EEG), NIRS and eye-tracking technology as they walk around, play and interact with other children. Experiments on Newborns. There has been some controversy surrounding the origins of the cell line, however. As the infants were able to detect the danger from the cliff side, Gibson and Walk concluded that their depth perception might be innate it was at least present as soon as they could crawl. But though the Hayflick limit currently seems like a formidable barrier for people, its no longer such a problem for scientists. In one experiment, a catheter was inserted through the umbilical arteries and . In both cases you're trying to develop tasks and get information from non-verbal creatures.. The baby seems unsure, so a research assistant appears, brandishing a garish musical telephone. 6oz. Back in 2013, the National Institutes of Healthcame to an understandingwith Lacks relatives, and set up a panel with three family members to review requests to access the full genome. Gas, says Karen. In a series of controversial experiments conducted during the 1960s, Harlow demonstrated the powerful effects of love and in particular, the absence of love. Last year, in a study of 104 infants, the Birkbeck team showed that infants at high risk of autism were drawn towards the face first, but they seemed to spend less time overall than 'neurotypical' babies in looking at any of the objectsand those that went on to develop autism had the shortest looking time of all. Baby Ezra will certainly not remember his day in the lab. The children were used in medical experiments without parental informed consent they were subjected to government-sponsored radiation experiments, among others. MRC-5 cells, named after the initials of the Medical Research Council where they were collected, were obtained from the lungs of another three-month-old foetus. Scientists have been attempting practical research with babies since the middle of the twentieth century. Dr. Bender's LSD experiments continued into the late 1960s and, during that time, continued to include multiple experiments on children with UML-401, a little known LSD-type drug provided to her by the Sandoz Company, as well as UML-491, also a Sandoz product. By comparing the global prevalence of certain infectious diseases in the 1960s, when the cell line was discovered, with the prevalence of infectious diseases then, he calculated that vaccines made with WI-38 may have prevented around 4.5 billion infections. ', Things got stranger still when Karen noticed an article in the local paper saying 16,000 people, including children, had been used in radiation experiments. Though today vaccines are extensively filtered, and dont contain any material from the cells theyre grown in, between 1955 and 1963, its been estimated that up to 30 million people were infected in the United States alone. There have been literally thousands of experiments done with these looking-time methods, Aslin says, and by and large it is a pretty reliable technique; you can have two labs running the same experiment and you get the same results. But Aslin and Kagan are two of a growing number of researchers who think that such infant studies should be viewed with caution: it can be dangerous to infer too much about the workings of a baby's mind from just their fleeting glanceand they worry that some labs do not control for confounding factors as well as they should. The therapist showed parents videos of them interacting with their child to help understand how their baby was trying to communicate with them, and how to respond. But the impact of it on each one of us and the family was devastating., In 1994, haunted by thoughts of her baby brother, Karen decided to devote all her spare time to answering the question that had burdened her for decades: how exactly did Mark die? The oldest person who has ever lived, Jeanne Calment, made it to 122 years and 164 days uncannily close. Sign up and be the first to find out the latest news and articles about what's going on in the medical field. Such material is made available for educational purposes, to advance understanding of human rights, democracy, scientific, moral, ethical, and social justice issues, etc. When they trap air in your body, youre in pain, excruciating pain, for days.. I truly believe that, says Murphy. I think in the history of people with developmental disabilities, and there have been some dark times. She was very hard on them, the girls., Doctors advised the Dal Molins to commit their son, so Bill told Rosemarie they had to send Mark to an institution. In his laboratory at the Wistar Institute in Philadelphia, he managed to incubate some of the tissue in several glass bottles at 37C (98F). I just remember one day coming home from school and the house was very quiet, says Karen, who never got to say goodbye to her brother. Because most of these children, they never see parents again., But those visits came to an abrupt end on Memorial Day, 1961, when Mark was 6. And if theres any way for me to find that, I would like to put him back together.. That was the opinion that Johnson quickly reached when he began infant research: the reliance on looking time and observations alone were unsatisfying. Please join meon Wednesday, April, The last generation of Holocaust survivors and their children express their concerns about current events A Five-Part, Copyright 2023 Alliance for Human Research Protection, Children were the raw material of medical research /Newborn Screening for 29 conditions, Panel to Advise Testing Babies for 29 Diseases, Join Robert F Kennedy Jr. April 19 in Boston, Vera Sharavs documentary Never Again is Now Global now available. Youve gotta have something there. The contamination is thought to have occurred because the cells were usually grown fresh from monkeys as opposed to from a stock of laboratory cells and SV40 is a common infection in the most widely used species, the rhesus macaque. Julia Russell has over 25 years of experience as a Psychology teacher. Karen found not one, but two autopsy reports, one for his body and another for his brain. One of the clerks came over to the front desk, leaned over and said When did he die? And I said, 1961. Well, when did he go into Sonoma State? And I said, 1958, and she said, You better look into it, because strange things happened there. However, the rule doesnt apply retrospectively, and there are many examples of tissue which was effectively stolen and continues to be used to this day. The answer is yes. However, the sample of human infants was quite small and the age range rather large some were likely to have been crawling for sometime before they were tested. And why can't people remember their earliest months and years? The waiting room is brightly decorated and scattered with easy-to-clean toys. Children have historically been the voiceless victims of medical research abuse and the doctors and staff who abused them have almost never been held accountable they are shielded by a whitewashed wall of silence.