http://www.irb-irc.com/IRB/
Clicking the link above should open a site that lists a variety of ethics codes relating to humans and research.
What I find particularly absent from these codes, is in my estimation, the only line of code that gives it any substance other than lip service.
I’ll list the two amendments that I believe are necessary for any ethical experimental research code. I don’t consider the wording of codes in this post as final product, just a general idea.
1.) Before a consent waver is signed, the experimenters must have the means to revert the signer to the state of progression before the experiment occurred, at around the time of signing.
The key topic here is reversion.
This entire concept is missing from any international code of ethics that I know of. It is even conspicously missing from all of those versions of the golden rule in every culture, a rule which is already known to fall prey to inversions like masochism.
The main reason I object to the ommission of this amendment, and consider this amendment to be critical to the ideal is:
If you happen to fall into that 0.000001 percent of known error rate, I really don’t think you can truly have made an informed consent. I just don’t buy it. What does it really mean to someone, to be told something like, “You have a one in a million chance to go crazy.”? Chances are, they couldn’t be crazy if they spend a lifetime trying to act crazy, and really have no conception of what they are actually consenting to.
When they do go crazy, the choice will seem obvious in retrospect, “I should have NEVER joined this research experiment!”. BAM!! Consent violated, end of story.
Where is the reversion mechanism?!? If there are not substantial reversion mechanisms in place for a research experiment, it’s my opinion that the researchers are looking to cut corners and really don’t have much of a grasp of what they are working with in general, even on the theoretical level. I think the entire society suffers from not having a reversion clause embedded into ethical code.
2.) Euthenasia
What if you are crazy or damaged in a means that there is no known workable reversion, a totally unexpected life-altering negative side effect?
It is my estimation that the service of euthenasia should be provided in all research experiment consent waivers. Sure, a researcher might love the chance to build a case study from some ‘way out there’ malady resulting from their experment… but that violates the whole point of and purpose of drafting codes of ethics in the first place.
If this issue is not addressed the problems become major. There may be a phenomenon that someone wants to study that they wouldn’t recieve consent for, so instead the phenomenon being studied is renamed decptively so that researchers can study the actual known side effect… the intent of the research project from the researchers point of veiw. If you trigger anxiety in a poor patient, the last thing they are going to want to do is leave the researcher! “Make this go away!! You started it, make it go away, how do you make it go away?”
The current code states that the person being tested can leave an any time. This is a joke in many instances of side effects we are currently seeing as a result of pharmacology, cybernetics or even virology. It can even get worse with nanotech. It’s totally pointless to have this ‘freedom to leave’ clause if the side effect is so traumatic that you will not want to leave or that you will no longer function in any consenting capacity close to the point of signing the waiver.
I do not see how this can be avoided by excluding euthenasia from the code.
In summary,
Regression whenever possible, and I mean it literally.
Euthenasia as the back-up for a “meteor from nowhere” result from one of these experiments.
Without these amendments, these codes practically beg for capitalism at the expense of consent. I want to say that the current codes aren’t strong enough, but in reality, I think that they are fluff, and a joke in seriously poor humor.