Informed disconsent is the latest in "ethical" medical studies.
Anyone that has been a patient in the American system knows the risks of medicine. Treatments that are intended to help people get better may worsen the underlying condition, or create some new (and more serious) problem. Because of this, medical studies are tightly regulated. Patients, in theory at least, give informed consent to pharmaceutical studies.
Unfortunately, the realities of the American system force many patients into studies. Those without insurance cannot afford expensive medications. So they sign up for studies--and risk their lives--in an attempt to get better. Thankfully, study disasters are rare. But they do happen, and they disproportionately harm the uninsured. Too often, the drugs don't work, and the patient sees no real benefit out of the study.
But trauma surgeons at Johns Hopkins University have taken unethical study practices to a new height: if you get in a car accident in Baltimore and end up at Hopkins or the ten other institutions that are participating in the study, you are a study participant...unless you write to Hopkins and give them your informed disconsent. Yes, that's right--everyone with certain life threatening conditions that goes through those doors is a potential guinea pig.
Those that give their disconsent are given a bracelet to wear. This raises other ethical problems. Patients that disconsented to experimentation are marked by their bracelet. Would those that gave their disconsent be less likely to get treatment and more likely to have their organs harvested?
Usually, I trust the medical profession, but given the "ethics" of this study, I have serious concerns. Further, as a patient with a serious medical condition (Crohn's/ostomy) I worry that if I disconsented an ER doctor could make a judgment about the quality of my future life. And by doing so, I fear that I may not get the treatment that I deserve.*
Patients that are experimented on without consent may get superior treatment, or the new ideas may turn out to fail, and they may die because they got inferior treatment. With informed consent, patients would at least know the risks of participating in the study. But Hopkins "ethicists" have rationalized that it's ok to experiment on someone that is about to die without consent.
According to Hopkins, it's too difficult to get consent from a patient or a family member when they're in urgent need of care. I'll grant them that point. But consent could still be obtained. Send a mass mailing out to patients that had been treated at Hopkins and the 10 other institutions that are participating in the study. Offer them some compensation for their participation. And create a prior pool of people that have given their consent to be experimented on. Keep their Driver's license in a database.
So somebody gets in a car crash, is shot, or has some other tramua. The first thing that the hospital does is take 10 seconds to input the Driver's License number. If it hits the "consented list" the doctors get to experiment. If it doesn't, then standard treatment is administered.
That is a reasonable way to conduct the study. But it'd be expensive and take some work to set up. Sadly, at Hopkins, laziness won out over sound judgment and competent administration of a study that could--if it were only ethical--be of benefit to all of us.
Cross-Posted on my blog
*I am marked as an organ donor on my driver's license and strongly believe in the concept, but after this "ethical" discourse from one of Maryland's finest institutions, I'm having serious second thoughts.