FUD From Dr Peel

FUD stands for Fear, Uncertainty and Doubt. You should probably take a moment and read the wiki-page, otherwise the rest of this post might be lost on you.

In the United States, FUD seems to be a legitimate marketing strategy for many institutions. Microsoft uses FUD regarding the coverage of their patents on the Linux kernel. SCO used FUD as its last central business strategy. Both the political parties use FUD constantly to target the other party.

It is easy to spot FUD, here is the easy criteria: If the source of potential FUD can be summarized as saying “Given a substantial lack of information about what is actually happening, there remains very good reason to still be terrified about it”

FUD is unpopular with advocates of Free and Open Source Software. Our community values transparency that is the opposite of FUD. Generally our expectation is that the data regarding any kind of problem should be made available for analysis, and then, and only then, should conclusions be made. Our community has the patience to read long contracts, to perform subtle meta level data mining or just to carefully review code for bugs.

Generally, unlike politics, real dialog is favored over mere rhetoric in the FOSS community. Don’t get me wrong, we also enjoy zinging those we disagree with (I am particularly fond of it), but zings are supposed to be fact-based and meaningful. In fact, we have a very handy way to detect when conversations are no longer meaningful and have become purely rhetorical. We call it Godwins law:

“As an online discussion grows longer, the probability of a comparison
involving Nazis or Hitler approaches one.”

Of course, the most important is the implication of the law:

“Godwin’s Law? Isn’t that the law that states that once a discussion
reaches a comparison to Nazis or Hitler, its usefulness is over?”
– Cliff Stoll (“Cuckoo’s Egg” author), ca. 1994

I would like to formally propose that we add Dr. Peels Corollary to Godwin’s law:

“As an online discussion of medical privacy ethics grows longer, the probability of comparison to the Tuskegee Study approaches one.”

Dr. Peel has commented on the announcement that an EMR vendor to share patient data with genetics research firm by calling it the “new Tuskegee.” (update 3-25-08 Joseph Conn conducted an investigation into the research story, that is well worth reading) Here are the problems with that comparison:

• The original Tuskegee experiment actually killed people, due to lack of treatment. As far as I know, the experiment under question does not include any withholding of treatment.
• The participants in the original Tuskegee were not informed regarding the treatment (or lack thereof) that they were receiving on their person. Apparently, the study that Dr. Peel is referencing involves genetic tests on blood samples.
• The original Tuskegee subjects were poor illiterate black share-croppers. As a result, the study looms large in the history of racial tensions in the United States.
• As the result of the racial targeting of the experiments, there remains a fundamental distrust of the medical system among the black population in the US. If you are black and need an organ donation, you might be in some real trouble because of this.

The Tuskegee Experiment stands as one of the most blatant disregards for ethics in modern medical history. By comparing this modern data analysis project to the Tuskegee experiment, Dr. Peel has solidly crossed over into FUD Territory. I have heard Dr. Peel speak in person, and I believe that her heart is in the right place. However, by making a comparison to Tuskegee, we are no longer having real discourse about the ethical issues about the case in question, which is obviously quite different from the original Tuskegee experiment.

In the data mining study in question, the patient data is de-identified. Which means that discrimination as a direct result of this study will be very difficult. It also means that the study qualifies for a HIPAA carve-out for de-identified data sharing.

However, there are some very concerning ethical issues in this case which deserve attention.

• The EHR vendor in question is anonymous, so we cannot really tell who is really participating in this. Knowing which vendor is doing this is a prerequisite for further discussion and thought.
• It is unclear from the article to what degree patients will have the option opt-out or opt-in, and at what stages this is an option.
• There is no mention of the algorithm used to do de-identification, so there can be no analysis on the possibility of a correlation attack.
• The study is covering genetic markers for type II Diabetes, which has a genetic race-related component. Although the current study is unlikely to be “racist,” it could lead to some tests that are used for the purposes of racial discrimination.

Some of these issues are ethical issues surrounding this study in particular. Others, especially the last one, are larger ethical issues faced by the entire medical community. The a real and sobering implications of these ethical implications as it is. It seems to me that by making an unwarranted reference to the Tuskegee Experiments we are moving to far afield from todays facts.
By making a reference to the Tuskegee experiment, Dr. Peel is essentially forcing these issues into a political debate, rather than the subject of further rational discourse. Perhaps I should be thinking about this differently. Perhaps I should be happy that Dr. Peel continues to raise consciousness with old-fashioned Republican/Democrat type politicians regarding issues of patient privacy.

So I leave it to the reader for comment. Is the use of Dr. Peels reference to the Tuskegee experiments in this context appropriate?

-FT