Code of Federal Regulations, Title 45- Public Welfare, Department of Human Services, Part 46, Protection of Human Subjects, (June 2005)
This is a graded discussion: 5 points possible
Discussion #3 – Current Events: Johns Hopkins
No unread replies.No replies.
From a Humanistic perspective, reflect on course readings and any other knowledge source (e.g, other course learnings, professional experiences, etc.) pertaining to research with children and the socio-economic-cultural-political contexts.
- What comes up for you as you review the Johns Hopkins study below; particularly when considering course readings?
- What, if any, implications might this have for you as a developing researcher, scholar, and/or practitioner? In other words, let’s assume these were good intended researchers who simply missed the adverse impact. How might you learn from this to assist in not replicating such oversight?
- What comes up for you when considering other groups? How might this impact ‘other’ groups’ responsiveness to social scientists?
- As you strengthen your comprehension of what is meant by humanistic psychology, what, if any, other comments or questions arise for you?
These are just a few questions to generate thoughts. Engage in substantive dialogue and respond to your colleagues.
John’s Hopkins Study
In shades of Tuskegee, word comes of a study conduced at Johns Hopkinshttp://www.nytimes.com/2011/09/16/us/suit-accuses-baltimore-institute-of-exposing-children-to-lead.html?_r=1 Links to an external site. in which families with African-American children may have been deliberately induced to move into lead-tainted public housing so the lead levels in the children could be assessed. Families of those showing elevated lead levels were never told and were never offered treatment.
The fact that this study could be conducted at a major university is further evidence that the system of research protections is broken. These protections often appear to be protections only for the researchers and institutions, not those subject to the research, who apparently are considered expendable. Dr. Gary W. Goldstein, the head of the institute where the research was conducted said the “research was conducted in the best interest of all of the children enrolled.”
Evidently, in his view, poisoning young children with lead and keeping knowledge of their poisoning from them is in the “best interests” of poor African-American children. We need have no doubt that “Dr.” Goldstein would never consider such treatment appropriate for his children or the children from his social circle.
One wonders how this study got funded and how it got approved. The “Informed Consent Formhttp://s3.documentcloud.org/documents/249528/clinical-investigation-consent-form.pdf Links to an external site.which would better be called a “Disinformation Form,” lists no risks of participating in the study. Nor does it list any procedures should participating children be found to have elevated lead levels, as happened to some of the children.
Here’s a New York Times http://www.nytimes.com/2011/09/16/us/suit-accuses-baltimore-institute-of-exposing-children-to-lead.html?_r=1> account:
Racial Bias Seen in Study of Lead Dust and Children
By Timothy Williams
A class-action lawsuit was filed Thursday against a prominent Baltimore medical institute, accusing it of knowingly exposing black children as young as a year old to lead poisoning in the 1990s as part of a study exploring the hazards of lead paint.
Lawyers for the plaintiffs say that more than 100 children were endangered by high levels of lead dust in their homes despite assurances from the Kennedy Krieger Institute http://www.kennedykrieger.org/ Links to an external site.that the houses were “lead safe.”
The institute, a research and patient care facility for children that is affiliated with Johns Hopkins University, periodically tested the children’s blood to determine lead levels.
But, the lawsuit said https://www.documentcloud.org/documents/249648-armstrong-vs-kennedy-krieger-class-action.htmlLinks to an external site., Kennedy Krieger provided no medical treatment to the children, who ranged in age from 12 months to 5 years old. Lead exposure was a significant cause of permanent neurological injuries in some of the children, according to the suit. Johns Hopkins, which approved the study, is not a defendant in the lawsuit.
“Children were enticed into living in lead-tainted housing and subjected to a research program which intentionally exposed them to lead poisoning in order for the extent of the contamination of these children’s blood to be used by scientific researchers to assess the success of lead paint or lead dust abatement measures,” said the suit, filed in state court in Baltimore. “Nothing about the research was designed to treat the subject children for lead poisoning.”
Dr. Gary W. Goldstein, president and chief executive of the Kennedy Krieger Institute, said in a statement on Thursday that the “research was conducted in the best interest of all of the children enrolled.”
“Baltimore city had the highest lead poisoning rates in the country, and more children were admitted to our hospital for lead poisoning than for any other condition,” he said. “With no state or federal laws to regulate housing and protect the children of Baltimore, a practical way to clean up lead needed to be found so that homes, communities, and children could be safeguarded.”
“Over all, the blood lead levels of most children residing in the study homes stayed constant or went down,” the statement read, “even though in a few cases, they rose.”
The lead paint study, which started in 1993 and continued for six years, was designed to determine how well various levels of lead abatement would reduce lead in the blood of young children. The buildings where the study was carried out were generally in poor neighborhoods of Baltimore. Litigation surrounding the research has gone on for more than a decade http://www.nytimes.com/2001/08/24/health/children/24LEAD.html Links to an external site., and in 2001 the Maryland Court of Appeals compared the study to the Tuskegee syphilis experiment, which withheld medical treatment for African-American men with syphilis.
According to the lawsuit, Kennedy Krieger helped landlords get public financing for lead abatements and helped select families with young children to rent apartments where lead dust problems had been only partly eliminated so that the children’s blood could be measured for lead over a two-year period, according to the lawsuit.
“What they would do was to improve the lead hazard from what it was but not improve it to code,” said Thomas F. Yost Jr., one of the lawyers who filed the suit.
Mr. Yost said that although parents signed consent forms http://www.documentcloud.org/documents/249528-clinical-investigation-consent-form.html Links to an external site. , the contracts failed to provide “a complete and clear explanation” about the research, which aimed to measure “the extent to which the children’s blood was being contaminated.”
David Armstrong, the father of the lead plaintiff in the lawsuit, David Armstrong Jr., said that after his son, age 3, was tested for high levels of lead in 1993, he went to a Kennedy Krieger clinic for help. The father said the family was provided state-subsidized housing by Kennedy Krieger and was told they would be part of a two-year research project. Mr. Armstrong said he was not told that his son was being introduced to elevated levels of lead paint dust.
Mr. Armstrong said blood was collected from his son for two years, but that no one told him the lead levels had increased. After the two-year mark passed, Mr. Armstrong said he continued to live in the two-bedroom apartment but did not hear from Kennedy Krieger.
During those two years, he said his son, now 20 years old, received no medical treatment for lead. Later, when Mr. Armstrong took his son to a pediatrician, the doctor detected blood lead levels two and a half to three times higher than they had been before the family moved into the apartment.
“I thought they had cleaned everything and it would be a safe place,” Mr. Armstrong said. “They said it was ‘lead safe.’ ”
