Cancer Registry Data Made Public

A Carbondale, Illinois newspaper, The Southern Illinoisan, engaged in an eight-plus year court battle to obtain cancer registry data related to neuroblastoma cases in areas in Southern Illinois. I have only looked into this briefly but it appears that after the families of four neuroblastoma children from Taylorville, Illinois were awarded a multi-million dollar settlement in civil suit in 1998. That suit apparently claimed that the NB cases were caused by a coal tar cleanup at in 1988. I couldn't find very much information on that case in a very quick search except for references to that case in news stories about the release of registry data. A reference does get made to the case, with no real detail, in Taylorville's Wikipedia entry. The recrods released were limited for a period of 1986 to 1997 and the newspaper is apparently now going after current data from the registry.

I'm a little torn on this. I'm okay with the thought that cancer can occur because of environmental factors but that it can also occur randomly. If there is data to suggest that environmental factors related to the types of activities that occured in Taylorville (5 cases listed in a town with a total population of 11,427 as of the 2000 census. By comparison, Chicago area zip codes accounted for 87 cases during the timespan the newspaper originally requested) can cause neuroblastoma, then the general public should be made aware, or at the very least scientists and health officials should looking closer at these possible connections. My son is on the registry and I'm a bit embarrased to admit that I don't know too much about its purpose, although I always assumed that it had something to do with acquiring large enough samples of tumor tissue and etc for laboratory testing and trials and also to be able to statistically analyze trend based on various factors such as location, family heatlh history, etc. Shouldn't our public health system be doing this type of analysis? Are they? Why does a newspaper feel that they need access to the information to do this research? Are they in it for the sensational story alone? Or is there real evidence that our public health systems don't use the registry to perform this type of analysis? I guess I need to do some more research of my own.

The State resisted making the records public. I have worked for various state agencies as a consultant and while in my experiences they generally want to make information available to the public, there is also this wariness of the "slippery slope". They fear if it is too easy then they will (a) get overburdened by responding to information requests and (2) that they may lose the ability to keep some information from the public based on their "professional judgement" or the privacy of their customers. The articles I read this morning seem to suggest that the biggest argument against giving up the information is patient privacy. Patient privacy is a serious issue and it is probably a bigger issue for adults on the registry than for kids. I'm sure that there are some families that keep their children's health information very close and private, but in my experience with other neuroblastoma families, it is pretty easy to find at the very least basic information about the kids and their health. Nathan's name, where he lives, the basics about his treatment, and a bunch of other information could probably be found just by pulling information from various web-based tools we have used to keep friends and family members informed about his condition. If these papers wanted to work hard enough they could likely find the bulk of the NB kids in a given area, especially in smaller communities like those found in Southern Illinois. Given the registry data, it will be very easy for them to find out the names and other information of those on the registry. This really doesn't bother me too much as a parent with a child on the cancer registry. Anyone could pretty easily find Nathan if they were looking for neuroblastoma kids in our area. As an adult on the registry, I might be much more concerned about my privacy. Nathan as an adult might be much more concerned about his privacy than we are now.

I thought I would have a stronger opinion about all of this by the time I wrote out my thoughts, but I don't. I'm very interested in the possibility of clusters. I believe that they can exist, but I personally doubt that neuroblastoma cases will ever found to be primarily in these "clusters". I'm also interested in the privacy concerns over making cancer registry data public. I think that independend researchers have probably often been better and more efficient than public resources at evaluating data and trends and that there could be real value to allowing this information out in some form or other. I think we need to be very careful of the privacy of the people on the registry though, even though I'm not terribly concerned about that from my own family's standpoint.

(Special thanks to my legal expert, Jim B., for tracking down the link to the supreme court case.)

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shadowfax said...

Amen. I can't see any basis for keeping data like this from the public, albeit in a identity-blinded fashion which would protect individual privacy.

I had similar problems in 1994 when I was trying to do a medical research project using the IL trauma registry. The state was really resistant to releasing the data, and as a result I was never able to complete the project.

JimII said...

The Arizona Courts are slowly moving to electronic databases. We already have several courts that are pilotting electronic filing. Everyone is behind that. But there is real concern about making the records available to the public.

Like the information on the registry, you can get court records. They are by definition public. However, right now you have to go to a court house and ask for a file or something. Putting them on line makes it so easier that the concern is it would be more ripe for misuse.

I'd have a similar concern about the registries you and shadowfax mentioned. (Is that proper blog-etiquette, to use the screen name?) Making information more accessible may make it more easily abused.

Cool Hand Luke said...

JimII, First it is definitely proper to use the "screen name" even when you know the man behind the mask. It is probably even preferred in general.

As I briefly mentioned in my post, aside from the cancer registry aspect I have worked with several state agencies all struggling with the information problem. One common fear is that industry will be less likely to provide accurrate and timely information if they can't be given some guarantee that their "trade secrets" will not be made public. If an agency relies on good information and relationship with industry to perform its duties and stresses an already strained relationship because of fears related to privacy, a negative outcome of the overall positive efforts to make information public could be a poorer performing government in some cases. In addition, there is a huge stress on staff to compile the information. Electronic storage may ease that a bit in terms of difficulty to get to the information, but it could increase requests as well which may offset those gains in efficiency.

Kind of off topic, but interesting.

Anonymous said...

What you won't find in most notes on the Taylorville case is that 2 of the children were from towns outside the community--up to 15 miles away. These 2 cases were left out of the class action suit (there were actually 6 kids total), because it would make it harder for the attornies to prove that it actually was that local gas company site that caused it. Also, none of those children lived even close to that area. I don't know if it actually was CIPS or not, but most locals assume they got blamed as the cause; the sad part is the real cause will probably never be discovered. I grew up less than a 1/2 mile from the coal tar site, and the boy that died was a good friend of mine.

Anonymous said...

I'm interested in knowing if the children diagnosed with cancer attended the same school(s) or lived in the same neighborhood. If anyone has information, please contact me.
Janice R. England
People Investigating Toxic Sites

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