Actual true story…
One of my friends who works in medical research has just been forced to retract a number of published journal articles due to what turned out to be a major violation of her university’s ethics policy.
The thing is, it wasn’t malicious. It wasn’t intentional. It was something that nobody had foreseen due to the nature of the work. If you’re developing new methodologies, the ethical standards surrounding the acquisition, analysis, and publication of the information may not have been established.
Even though my friend did not intend to breach the code of ethics in her research, the fact remains that she did. What was meant to be an anonymous study, ultimately wasn’t. The study participants could be tracked down with minimal effort.
All of the paperwork in the world may have been signed off on, but a genuine lack of foresight into how the data would eventually be disseminated has lead to a group of participants in a medical research study being able to be identified.
This same friend has contacted me a number of times on behalf of others at her university about participating in certain studies. She doesn’t seem to understand why I constantly refuse. This is why.
It’s not that I think anybody is going to maliciously disseminate the data. It’s that “accidents happen”. All the best intentions in the world can’t stop the “oh, crap, why didn’t we think of that?” moments.
These papers and their associated data may be getting retracted as I type, but at the end of the day, they’ve been out there in the public domain for months. People have seen this stuff. There is no taking that back.
I’m sympathetic to her situation, unforeseen consequences and all that, but is it really any wonder that people are hesitant to participate in these things anymore?
This is the downside of being forced to make everything public. How do you decide what “everything” is, while still maintaining ethics standards?
Open access, you have to publish all the data, it’s government funded!
And look where we’ve ended up.