Baltimore Lead Study

September 19, 2011 3:08 AM

An experiment done in the 1990s exposed children to various levels of lead. The lawsuit filed in 2001 by the parents of over 100 participants accuses the Kennedy Krieger Institute that the scientists knowingly used the kids as test subjects in toxic dust control study.

The goal of the study was to find ways of cleaning the old Baltimore houses of lead and to protect the children from further contamination. The participants were moved to places where they will be safe - that, at least, was the parents' understanding when they signed the consent forms. But for some children the opposite turned out to be true. The parallels to the infamous Tuskegee syphilis experiment are drawn - the children, coming from the poor parts of Baltimore, were black.
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posted by hat_eater (51 comments total)

If this is true, I hope to hell some of the motherfuckers responsible will see some jail cells.
posted by flapjax at midnite at 3:14 AM on September 19, 2011 [1 favorite]

This isn't going to be the last time we read about something like this. Ten years down the line, they'll be talking about another set of poor folks they were experimenting on. People will trust anyone in a lab coat or a sense of authority.
posted by Malice at 3:17 AM on September 19, 2011

Correction: the class action lawsuit is recent, although as the article states the litigation has been going on since 2001. Sorry for the confusion.
Other than that, I have nothing nice to say.
posted by hat_eater at 3:18 AM on September 19, 2011 [2 favorites]

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.”

That statement just sort lies there like a particularly smelly shit, doesn't it? Any PR people looking for an abject lesson in weasel-wording, look no further.
posted by maxwelton at 3:36 AM on September 19, 2011 [2 favorites]

Before I light my torch and get my pitchfork - as the framing of this FPP encourages - maybe I might take a look at the evil monster of this FPP: the Kennedy Krieger Institute.

"Located in Baltimore, MD., Kennedy Krieger Institute is an internationally recognized institution dedicated to improving the lives of children and adolescents with pediatric developmental disabilities and disorders of the brain, spinal cord and musculoskeletal system, through patient care, special education, research, and professional training."

Hmm. They don't sound like a fascist agency of the U.S. government (perpetrator of the infamous Tuskegee syphilis experiment).

*Blows out match*

Where is the profit in exposing kids to lead?

According to first link the Institute defends itself:

“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.”

So they were attempting to clean up homes in Baltimore which were already contaminated with lead? How are they going to make obscene profits doing that? Too bad for the kids, but a disaster for investors.

*Leans pitchfork against barn*

“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.

But it seems if there were "no state of federal laws to regulate housing and protect the children of Baltimore" how could they have failed to improve it to code?

Perhaps it seems they would have been better off to have done nothing at all.
posted by three blind mice at 3:58 AM on September 19, 2011 [5 favorites]

Hippocratic oath: "First do no harm"; indeed they would have been better off doing nothing at all.
posted by Renoroc at 4:01 AM on September 19, 2011 [1 favorite]

I, too, sought some explanation for what has been done, and I saw it, but no matter how I looked at it, I couldn't find any excuse to keeping the parents in the blind. So I kept the framing.
posted by hat_eater at 4:14 AM on September 19, 2011

"keeping the parents in the blind dark"
posted by hat_eater at 4:22 AM on September 19, 2011

Yes. This was a terrible study, and it refused to treat its subjects as human beings, never mind vulnerable innocents like toddlers from poor families. It was ill-conceived from the word go, and those involved in it need to be kicked right the hell out of research.

There are other ways to study the effects of partial lead abatement than to put children in the line of fire with deliberate exposure. Let me stop and repeat that. Deliberate exposure. They weren't studying families who were already living in a high-lead home. They created a variety of poisonous environments, to see how sick it would make a toddler, and they did it on purpose.

This is the most bogus junk science I've heard of in a loooong time. It's pure evil. The results must be discarded... which is another crime. They took money and resources that could have gone to real research to make a real difference in lead abatement, and decided to play this stupid game instead.
posted by Slap*Happy at 4:46 AM on September 19, 2011 [6 favorites]

Hippocratic oath: "First do no harm"; indeed they would have been better off doing nothing at all.

Which of course is an unbelievably stupid principle that modern medicine routinely ignores.

Cancer patients are done a great deal of harm by chemo and radio therapies. Amputation does harm. Antibiotics disrupt critical digestive fauna. In fact, I suspect it would be impossible to find a medicine that does not first do some harm.

I'm much more comfortable with the more modern approach which is "Don't let the patient die" than something formulated by a long dead Greek dude who would be regarded today as a holistic health crank.

That said I have no opinion on the current study/link as I don't go behind the NYTimes regwall.
posted by srboisvert at 5:04 AM on September 19, 2011 [2 favorites]

three blind mice: are you out of your mind? You read some fluff PR and buy it wholesale? Who said there had to be "profit":

From the article:

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.
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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.

Do you understand what happened here? They took this family out of his home and put him in a home with more lead in it, while at the time lying and saying it was led safe. For two years they took blood samples but never told the parents about increased lead levels. After the experiment they just left them there, with the kids continuing to be exposed to lead and didn't even tell them about the increased lead levels!

Perhaps it seems they would have been better off to have done nothing at all.

No shit! At least in that case the parents could have gotten accurate information about where to take their kids.

I have no idea how you are getting hung up on whether or not they were making a "Profit" WTF does that have to do with anything?
posted by delmoi at 5:07 AM on September 19, 2011 [6 favorites]

It could have been framed like this:

Before 1996, lead-based paint was used in 95% of Baltimore's low-income housing. An alarming "40% to 50% of the predominantly African American children living in these high-risk neighborhoods had elevated blood lead levels (>20 micrograms per deciliter [μg/dL] of blood), deemed 'moderate' blood lead elevation by contemporary Centers for Disease Control and Prevention (CDC) standards" but lead was not being removed from homes because of cost -- an estimated $20,000 per home.

In the 1990s, the Kennedy Krieger Institute, which focuses on research into brain-related disorders, conducted a 2-year study to find cost-effective ways to reduce the level of lead in children's blood. They identified the problems as (pdf):

- There was an acute shortage of lead paint free housing, particularly for low income/high-risk populations;
- Society had not committed the resources to abating lead paint hazards in these private, older homes;
- Efforts to identify and reduce environmental sources of lead in the home were made only after children were found to be lead poisoned;
- There were no laws or regulations requiring landlord-initiated preventive maintenance to reduce lead hazards in rental units; and
- Because of these factors, children would continue to occupy high-risk lead painted houses for decades to come.

To do the study, they treated homes in Baltimore with different methods of lead-removal, and then monitored the lead levels of the children in those homes. "The study included 108 houses in 5 comparison groups: 3 treatment groups that used the new lead abatement procedures, costing $1650, $3500, and $6500, respectively, and 2 comparison conditions, composed of housing that had been abated by the city of Baltimore and housing built after 1978 that was presumably free of lead paint. By design, the researchers chose not to include a control comparison of existing housing that had received no abatement procedures, because they considered it unethical to follow children who were being exposed to a known health hazard without remediation, despite the fact that this was the condition of the majority of children living in these neighborhoods."

The participants in the study were the people most abused by the lack of legal protection for lead-free homes. The study moved them from homes that had significant lead problems to homes that had been treated by the various lead-removal processes. The Baltimore City Health Department monitored the lead levels in the children. The study was replicated in 13 other cities.

For most children in the study, the lead levels stayed the same or dropped. In 1996, Maryland passed a law that made the lead abatement program law, which as resulted in a 93% drop in lead poisoning. Unfortunately, some children had higher levels of lead in their blood, and the parents of these children do not feel they were adequately informed of the risks of the study, or possible actions they should take. They are suing the Kennedy Krieger Institute for negligence, fraud, battery and violating the state's consumer protection act. They draw parallels to the Tuskogee syphilis experiment.

Don Ryan (who was the executive director of the Alliance to End Childhood Lead Poisoning at the time of the study) was asked about that parallel. "Ryan said he hopes the lawsuit might highlight the ongoing health crisis of low-income housing. 'The number-one environmental health hazard is crummy, substandard housing,' he said, adding that lead poisoning, mold, pest infestations and asthma triggers continue to plague low-income neighborhoods.

'Are we going to accept a significant portion of our population living in housing that hurts their health?' he asked. 'I would hope this case would lead to a check in the American conscience about the quality of low-income housing.'"
posted by Houstonian at 5:09 AM on September 19, 2011 [19 favorites]

What do they mean there are no laws? Baltimore's housing code, like that in every US city, specifies the following requirement for landlords and property owners:

The entire unit, both inside and outside, including window frames, must be free of cracking, scaling, peeling, chipping and loose paint. This prevents exposure to possible lead-based paint hazards.

Obviously, many landlords (including public housing) are not in compliance. That doesn't mean there's no law. The thing to do in this situation is go after the property owners with citations. Not test exposure risks on unknowing families.
posted by spitbull at 5:15 AM on September 19, 2011 [1 favorite]

Thanks for providing the background that was lacking from my fpp, houstonian. I wish you posted more often (than not at all). That said, I still can't understand why some participants were not informed that their children were still being exposed to lead.
posted by hat_eater at 5:24 AM on September 19, 2011

The article is pretty bad at presenting the "what were they thinking?" of the events, or even giving a sense of what actually happened.

Perhaps it seems they would have been better off to have done nothing at all.

There might be a problem in notification and followup, though it's not clear what went on here. Fred Testsubject says he wasn't notified, but was he?

There is also a gray area where measuring someone in existing danger is different than enticing them into new danger you create even if it may average out to be less dangerous overall. Some kids went from a low lead natural environment to a higher lead kid-poisoning chamber test environment.

I mean, what if they put the people in completely lead-free homes, but started injecting them with some other poisonous substance that was about as dangerous as lead? Would that be okay?

They took this family out of his home and put him in a home [...]

At gunpoint?
posted by fleacircus at 5:25 AM on September 19, 2011

The especially indefensible part is when some of the children's blood levels stayed the same or went up. That would have made it immediately obvious that those children were still being exposed to lead, and that the abatement process was inadequate.

Leaving children in the study to see how much worse they would get, knowing they were still being exposed, is horrifically unethical and not notifying the parents once you had a strong suspicion that they were living in unsafe housing is unbelievably callous.

“I thought they had cleaned everything and it would be a safe place,” Mr. Armstrong said. “They said it was ‘lead safe.’ ”

The minute the tests said otherwise the parents should have notified and the kids should have been pulled. There is no excuse for knowingly allowing children to live in a home that is still poisoned. Obviously that treatment doesn't work. Experiment over.
posted by the young rope-rider at 5:39 AM on September 19, 2011 [2 favorites]

Why was this even necessary? I remember hearing about lead, screening, and warnings back in the late 70s/early 80s.
posted by stormpooper at 5:42 AM on September 19, 2011

It was not unethical study versus doing nothing. They could have made an ethical study.
posted by dances_with_sneetches at 5:45 AM on September 19, 2011 [3 favorites]

At gunpoint?

No, but if your choice is to stay somewhere where your child is being poisoned or to move somewhere safe--that's hardly a choice.

Who would pass that up? Imagine the AskMe:

Our son's blood has dangerous levels of lead. He has already shown some delays. We have gotten an opportunity to move to another subsidized apartment, thanks to this highly-regarded research foundation that says that it is safe. They will be monitoring the apartment and our son for lead so he will have to do blood tests, but that's it. We will be allowed to stay in the safe apartment indefinitely. Otherwise, we will have to keep living in the apartment that has been poisoning our child, or move to another apartment that might also be contaminated with lead. What do we do?

Do you think anyone would tell them anything but "move, for the love of god, move"?
posted by the young rope-rider at 5:56 AM on September 19, 2011 [3 favorites]

are you out of your mind? You read some fluff PR and buy it wholesale? Who said there had to be "profit"

I was objecting to (what I perceive as) the "get-yer-torches" framing of the FPP. There is no need to throw red meat to the blue crowd. Whilst the NY Times might want to draw a parallel to Tuskegee and highlight the racial angle, it doesn't help explain what happened:

"This was a terrible study, and it refused to treat its subjects as human beings, never mind vulnerable innocents like toddlers from poor families. It was ill-conceived from the word go, and those involved in it need to be kicked right the hell out of research."

Well said Slap*Happy. How does (what appears to be) a legitimate research institute make this sort of mistake? The usual evil suspects, corporate greed (profit) and government don't seem to come into view here.
posted by three blind mice at 5:57 AM on September 19, 2011

Scientists seeking information forget they are dealing with real human beings?
posted by Secret Life of Gravy at 6:13 AM on September 19, 2011

From a scientific perspective the initial consent form does look adequate to me, if only barely. The study went into a community with children exposed to absurd but still largely unknown hazards without a single standard of care to address those hazards. There is no way the units involved would have gone unoccupied. The study then applied the known standard of care treatments to the at risk group, without an unethical control, testing which was best. All of the study participants moved from housing that was receiving no treatment to housing that was receiving a treatment with the best then known efficacy. Indeed, each of the treatments was effective, and the study successfully showed that some were more effective than others giving the community a better path forward.

The framing of this study as analogous to the Tuskegee experiments does not seem helpful. The callous racism, neglect, and miserliness of the people of the State of Maryland and the Federal Government in allowing there to be neighborhoods where 35% of children have severe lead poisoning however does seem to compare.
posted by Blasdelb at 6:38 AM on September 19, 2011 [4 favorites]

People will trust anyone in a lab coat or a sense of authority.

No, they won't - and experiments like this can have disastrous long-term effects on public health as a result.
posted by ryanshepard at 6:42 AM on September 19, 2011 [4 favorites]

No, they won't - and experiments like this can have disastrous long-term effects on public health as a result.

Exactly. People are trusting only to a point, that being when a few of these such experiments enter the public consciousness. After that it's very, very difficult to get people to trust even the most basic scientific research.
posted by odinsdream at 6:55 AM on September 19, 2011 [2 favorites]

The results of this study contributed to the passing of the current lead safety standards in Maryland, which have improved the lot of tens of thousands of children. The goal of the study was to find the optimum lead abatement method, given the means available. All of the lead abatement methods used in the study were aimed at reducing exposure. The study identified some of them as being more adequate than others. Without results from a study like this one, Maryland could have set inadequate standards.

Yes, some children's families were moved into housing where inadequate lead abatement was applied. However, the inadequacy of the method wasn't known at the time. The assessment of risk reduction was the entire point of the study. For all the researchers and policy-makers knew, the more economical methods might have been just as effective as the more costly and labor-intensive ones.

Baltimore in particular has immense stock of hazardous and dilapidated housing. I've lived in Baltimore and worked with Baltimore inner-city children. The incidence of chronic illness among them is quite high, asthma and eczema in particular. It's unrealistic and counterproductive to expect all of that nuclear waste-grade housing to get torn down and replaced with shiny, new, lead-free housing anytime soon.

Finally, anyone who wants to help, rather than feel righteous anger, is welcome to donate to or otherwise help out Baltimore's Coalition to End Childhood Lead Poisoning.
posted by Nomyte at 7:01 AM on September 19, 2011 [1 favorite]

The only thing I can see that might be negligent is if the blood test results that were available were not sent to the parents like it says on the consent form. This is what the plaintiff alleges, and it is big problem if the families were counting on getting the testing results and they never arrived. The comparisons to the Tuskegee experiment is not justified.
posted by demiurge at 7:15 AM on September 19, 2011

Yes, some children's families were moved into housing where inadequate lead abatement was applied. However, the inadequacy of the method wasn't known at the time.

The minute it was known, why were the children kept in the apartments and the experiments? How were children allowed to stay there with ever-increasing levels of lead in their blood (or even a steady amount of lead, which would indicate that the abatement wasn't working)?
posted by the young rope-rider at 7:18 AM on September 19, 2011 [3 favorites]

That said I have no opinion on the current study/link as I don't go behind the NYTimes regwall.

There should be some kind of Hippocratic oath for MeFi: "First, RTFA."
posted by AkzidenzGrotesk at 7:25 AM on September 19, 2011 [3 favorites]

In that intersection in my mind, where drama and real life criss-cross, where fiction and reality intertwine, there's a Baltimore denizen who would take care of anyone found guilty of knowingly endangering the health of these Baltimore inner city kids.

That fellow would, of course, be... Omar.
posted by flapjax at midnite at 7:28 AM on September 19, 2011 [1 favorite]

> The minute it was known, why were the children kept in the apartments and the experiments? How were children allowed to stay there with ever-increasing levels of lead in their blood (or even a steady amount of lead, which would indicate that the abatement wasn't working)?

Because this wasn't a charitable intervention. At the time, virtually all Baltimore housing contained unacceptable levels of lead. Participants received the option of moving into housing that contained lower concentrations of lead.

You seem to be saying that KKI owed all participants brand-new, lead-free housing in exchange for participating in the study. That's a nice sentiment, but how ralistic is it?
posted by Nomyte at 7:34 AM on September 19, 2011

Disclosure: I worked for KKI very briefly in 2006 in a completely unrelated capacity.
posted by Nomyte at 7:36 AM on September 19, 2011 [1 favorite]

You seem to be saying that KKI owed all participants brand-new, lead-free housing in exchange for participating in the study. That's a nice sentiment, but how ralistic is it?

In studies that I have seen, the participants are offered free treatment and if the patient is not improving, the treatment is stopped and another treatment is offered. It is also made clear at the outset that some of the treatments might work better than other treatments. In this study, that was NOT made clear; the generic term "abatement" was used and no mention was made of the fact that some of the abatements might be less effective than others, or completely ineffective.

From a study at Columbia University (bolding mine):

Once the treatment is started, patients will be expected to come to the treatment site on 9 occasions over 12 weeks. Then, if improved, patients will return on 3 occasions over the next 12 weeks. After completing the treatment program, we will evaluate you on 2 more occasions over the next 6 months. If at the end of 12 weeks you have not been found to be improving, we will offer three months of treatment of a different kind at no charge for three additional months. If you complete the entire 24 weeks of the treatment phase you can choose to be treated openly at no charge for another three months.

posted by the young rope-rider at 7:49 AM on September 19, 2011 [3 favorites]

Nomyte: When the children started showing increased levels of lead, what possible reason would there be for not alerting the parents? Even if the cause is unknown, a notification is the only sensible course.
posted by odinsdream at 8:00 AM on September 19, 2011 [1 favorite]

Consider the alternative: if the study hadn't been attempted, all of these families would have remained in completely unimproved housing, which was virtually the only kind of affordable housing available in Baltimore at the time. The "treatment" for ongoing lead exposure is to remove the source for lead exposure. Before the completion of the study, the only sure "treatment" was access to totally lead-free housing. It's not like treating drug addiction or diabetes.

If families were not notified of blood test results, as some participants allege, that would constitute a breach of research ethics. Whether that is the case will be decided in court, although I'm almost certain this case will be settled privately. KKI and Johns Hopkins U. as a whole have always faced strong hostility and distrust in the Baltimore working-class community (which is majority black), so sensational comparisons to Tuskegee are just fuel for the fire.

One should also keep in mind that test results fluctuate around the real number, so that a real long-term increase in blood lead levels can be masked by random test fluctuation, and phantom increases can be suggested by random fluctuations as well. That's why statistics was developed.
posted by Nomyte at 8:15 AM on September 19, 2011

Three weeks after my son was born a letter from the hospital arrived. They've found out he might be at risk of developmental disorder and needed another blood sample to confirm it. When on the next day I arrived breathless at the hospital, the lab technician assured me with a smile that most likely everything is fine with my son and they just wanted to address some irregularity they've found in his test results. They used to ask nicely for samples but people rarely paid them much heed so they turned to more scary language.
"But three weeks passed since you took the first sample, what if it really was phenylketonuria?" I asked.
"Believe me, we'd find you underground the next day", she said.

And that's the attitude that's missing from these stories.

With additional background provided by blasdelb and Nomyte I think that making the Tuskegee parallel (which wasn't done by me but endorsed by my framing) much less equating the two studies is stretching it near the breaking point. However, although we don't know why the parents of these children who stayed in houses where the abatement failed were not informed of the continued danger, as they claim, it was a clear failure of the persons responsible for this study.
posted by hat_eater at 8:19 AM on September 19, 2011 [1 favorite]

KKI and Johns Hopkins U. as a whole have always faced strong hostility and distrust in the Baltimore working-class community

Why do you think that is? I'm asking as someone totally unfamiliar with these organizations and, in fact, with Baltimore as a city.
posted by flapjax at midnite at 8:20 AM on September 19, 2011

the young rope-rider wrote: There is no excuse for knowingly allowing children to live in a home that is still poisoned.

Yet we as a society make that decision each and every day. Why? Because it mostly affects poor people. Even poor whites have their kids made stupid by lead, although they're more likely to eventually see the problem remediated or otherwise worked around than poor minorities.

If the parents were told that their new homes were completely lead free, there's moral ground to stand on in this lawsuit. Otherwise, it's complete BS, because they had the same notification of possible lead problems they would have had in any other housing.

Incidentally, I'd be interested to know if there are any studies looking into whether poor school achievement in lower-class neighborhoods has anything to do with cognitive deficits caused by chronic lead exposure. It may turn out that we can solve a lot of problems with public schools and elsewhere just by spending the money to clean up lead in housing.
posted by wierdo at 8:51 AM on September 19, 2011 [1 favorite]

Why do you think that is? I'm asking as someone totally unfamiliar with these organizations and, in fact, with Baltimore as a city.

I don't know, and I am not prepared to speculate. There seems to be a foundation of distrust and ongoing things that contribute to it. A Baltimore historian would be much better equipped to tackle this question.

But to give one example, the medical center has recently expanded its campus into a nearby neighborhood, and it turned into a shitstorm. Local community members were protesting that Hopkins was displacing residents, when residents were offered better housing elsewhere in the city. An agreement was eventually reached and the campus received an expansion, but the bad feelings remain. There are often no ideal solutions to these problems, but Hopkins does a great deal of good to the Baltimore community as well. On a slightly related note, Baltimore public school graduates who are admitted to Hopkins attend completely free of charge.
posted by Nomyte at 8:59 AM on September 19, 2011

The consent form says the lead had been abated. It made no mention of the different kinds of abatement being studied or the possibility that there was still significant risk of lead exposure.

I really don't understand the sentiment here which seems to be that this large, well-funded research organization had no obligation to these children or their parents. Not to tell them about the true nature of the study, not to inform them that their lead levels showed no improvement, not to pay the extra 2k to fix the apartments to the level of abatement that they KNEW would work, not anything, because the kids are already poor black kids in Baltimore. What's a little more neurological damage?

Whatever. I'm stepping out of this thread but I do suggest that those of you who are opining about what the participants were and weren't notified of read the consent form as linked from the NYT article, and if you have time, read the lawsuit as well.
posted by the young rope-rider at 9:01 AM on September 19, 2011 [3 favorites]

delmoi, I'm already bound by the rules of research ethics. I have been extensively trained on its requirements. Ethical treatment of study participants is our first concern. I find your comment offensive. Epidemiological and public health research is always very difficult and the stakes are incredibly high. That much is clear to everyone.
posted by Nomyte at 9:14 AM on September 19, 2011

We have known about lead for decades, and had standards and tests for nearly that long; why did it require a separate Maryland study on abatement...were there no other abatement options out there? Would Maryland really only have passed laws based on its own studies, not on the (to my understanding) ample evidence out there for lead harm?

And why in Jebus' name would you use humans to test your abatement methods, not lab animals?
posted by emjaybee at 9:30 AM on September 19, 2011

And why in Jebus' name would you use humans to test your abatement methods, not lab animals?

I suspect that part of the question of what abatement method to use is what young kids are most likely to be exposed to, and part of that is human behavior, which animals won't model.
posted by thegears at 9:40 AM on September 19, 2011 [1 favorite]

I agree the investigators had a duty to pass the results of the tests to the residents. But if there were no study done at all, these houses would still have been rented and occupied with no testing and no abatement. From the documents, it seems like the lead abatement procedures performed were not experimental, but were based on what commercial companies were doing to reduce lead. So, if you are arguing that the study increased the risk of lead exposure to the residents, where are you saying that increased risk comes from?
posted by demiurge at 9:55 AM on September 19, 2011

Why do you think that is? I'm asking as someone totally unfamiliar with these organizations and, in fact, with Baltimore as a city.

I don't know about Baltimore and the Kennedy Krieger Institute and John's Hopkins specifically, but:

(i) Often scientists and doctors and other professionals come from upper middle class backgrounds, and hold certain assumptions about working class people, no matter how kind and desirous of doing right the individuals may be.

(ii) These assumptions include, or manifest (in the case of well-meaning professionals) as:
a* believing that/acting as if poor people can't or don't want to learn enough about technical or complicated scientific or policy issues to make completely informed decisions;
b* believing that they (the professional) has complete (or much more complete) information about circumstances affecting the lives of a group of poor people, and is best qualified to make informed and intelligent decisions about what is best for the group of poor people; believing that/acting as if the professional knows the needs (and possibly the desires) of the poor people, perhaps better than the poor people themselves;
c* and, therefore: believing that/acting as if the ends justify the means in that if some objective circumstances improve for a group of poor people as a result of the professional's intervention, then an unqualified good has been done.

(iii) The entire economic, political, and social culture of the US conspires to make poverty invisible from above. So well-meaning professionals often know far less about the circumstances, needs, and desires of people living in poverty than they think they do. (I could give you some examples from my working class upbringing that involved mere relative poverty, but I'm sure there are other mefites who could give even more illustrative examples than I.) Also, they tend to be really bad at listening to poor people.

(iv) Being poor in the US (and most other places I know about) often involves problems of absolute poverty: lack of adequate nutrition, clothing, safety, housing or safe housing, health care, education. It always involves problems of relative poverty: first and foremost, denial of agency. There is a very, very long history of well-meaning but ultimately clueless initiatives to "help the poor" by more well-to-do people. Community-initiated programs have a history of not being picked up and adequately supported, with resources going instead to externally imposed programs. There are some highly successful externally initiated programs, but a common thread in most externally initiated programs (historically at least) is a lack of adequate consultation with the poor communities that are the targets of the programs - a "do for" rather than "do with" approach. This compounds the feelings of helplessness, inability to influence or control the circumstances of one's life or one's community, and the feeling of ... searching for word... perhaps infantilization? - like that one is not considered adult or competent enough to be involved in the big people discussions that affect one's life - in short, the lack of agency that is one of the particularly wearing aspects of living in poverty.

Eg., near me, in Halifax, there used to be a strong black community, Africville, at the north end of the peninsula that Halifax lies on. It had no town services (sewer, running water, etc.), and also the town wanted to build a second bridge across Halifax Harbor, and the most convenient place for the on and off ramp for this new bridge, for the city planners and politicians, was right where Africville was located. So they relocated as much of the community as would fit to a public housing project a little farther south. The homes in the public housing project were decent when first built, had sewer and running water, were closer to the conveniences of the rest of downtown, etc. But the former residents of Africville owned their old homes, and did not own these new homes. Also, as with any relocation of an entire community, people got dispersed and it was a significant disruption of community bonds. Some politicians and planners thought they were doing a good thing, because hey, sewer and running water! But, due simply to not involving the community or seeking out a community-generated solution (eg. run sewer and water up to Africville and put the foot of the new bridge slightly farther south), they in fact did a lot of damage to the community. Also, people didn't have a choice in the matter of whether or not to relocate, and nobody likes to be dictated to like that.

A guess: poor Baltimoreans may feel antagonistic toward the Kennedy Krieger Institute and John's Hopkins because they resent this denial of agency even in programs supposedly designed to help them, such as is evidenced by the study we're discussing here.

It sounds like the program did help many participants, but the lack of adequate communication made the program ultimately more harmful than beneficial to others. And that, for those cases, is a breach of research ethics.
posted by eviemath at 10:01 AM on September 19, 2011 [6 favorites]

The Baltimore Sun has a whole section of their website devoted to lead poisoning. Another side of the issue, which I've only been following peripherally, is the role of the housing authority. The most recent story was about how much the housing authority is paying to defend itself against nearly $12 million in court-ordered judgments to former public housing residents.
posted by postel's law at 10:45 AM on September 19, 2011

[stop calling each other stupid, thanks.]
posted by jessamyn at 12:30 PM on September 19, 2011

Nomyte, considering you said:

I'm already bound by the rules of research ethics

...and delmoi was responding to wierdo's comment that:

If the parents were told that their new homes were completely lead free, there's moral ground to stand on in this lawsuit. Otherwise, it's complete BS, because they had the same notification of possible lead problems they would have had in any other housing.

...I'm a bit disturbed that it is delmoi's comment that you found offensive. After all, the researchers knew that the kid's lead levels were going up. Would you (as someone bound by the rules of research ethics) actually keep that information from the parents? Keep in mind that the parents knew their child was being monitored for lead poisoning as part of the study.
posted by davejay at 12:35 PM on September 19, 2011

I'm also interested in the answer to the question davejay posed. It's what I asked earlier, without getting an answer yet.
posted by odinsdream at 1:53 PM on September 19, 2011

Nomyte already said above: "If families were not notified of blood test results, as some participants allege, that would constitute a breach of research ethics." That answers your question.
posted by demiurge at 2:40 PM on September 19, 2011

This is a tricky issue. They exposed kids to more led, monitored their blood levels, and didn't inform the parents about the need for treatment when the study was over. What?!

That said, the sinister-sounding element of exposing kids to lead - well, I'm not sure that's as fucked-up as it sounds, given the status quo. That and, te need to research lead abatement strategies was - and still is - really damn important. The need for studies that try to figure out how to limit exposure to lead is a major issue of urban health and of public health - as well as of environmental justice.

Clearly, though, this study fucked up bigtime. Its Institutional Review Board, which is supposed to protect human subjects of research, fucked up big time.

But to respond to stormtrooper's "why was this even necessary?" - You may have heard about lead screening and warnings in the 70s and 80s but it's always been a public health challenge to figure out how to a) get those warmings to everybody, and b) to figure out how to clean up or control the lead paint inside houses. The fact that the dangers have been known for a while didn't make it a magically simple proposition to go into every house that was built or painted prior to the 1978s and make sure that the lead abatement. Or, for that matter, to get information to spread through communities that cracking, chipping paint is really dangerous. Complicate that with the distance between many Civic Institutions and poor, inner-city, or immigrant populations and you've got a problem that yeah, takes decades to address: now that we know this, how the fuck do we fix it?

And why in Jebus' name would you use humans to test your abatement methods, not lab animals?

Most lead exposure comes from swallowing or breathing lead - usually as dust, paint chips, or in soil. Furthermore, children are particularly sensitive to lead poisoning because their bodies are still developing - exposing animals might not provide any useful information.

Be not mistaken - lead poisoning is still a major public health issue. Especially since that paint with all that lead in it is still coating the walls of places that millions of people live.
posted by entropone at 6:41 AM on September 20, 2011

For more perspective (particularly of the researchers' side), see discussion at (via) (particularly posts by Ginger).
posted by hat_eater at 1:46 AM on September 21, 2011