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Informed Consent At Risk - HB 2009

A Community Conversation About Health and Responsibility: Vaccines and Beyond

In Washington State, certain vaccines are required prior to enrollment at any school or childcare, public or private. Washington State also provides three exemptions: medical, religious and personal/philosophical. House Bill (HB) 2009 seeks to eliminate the personal/philosophical exemption.

Why should you care? Because informed consent protects us all.

We are facing a medical crisis in America, and it’s not measles. In the USA, primary care physicians average 13 to 16 minutes with their patients. They are expected to touch on the five cornerstones of diagnostic medicine: anatomy, physiology, pathology, psychology, and socio-political elements (family, work, stress, beliefs, environment). THEN, they must enlist the patient’s agreement to a management plan, which will include educating the patient about the causes, progression, outcomes, and possible treatments, as well as often providing advice for maintaining health. And they must do all of 16 minutes or less?

“Trust your doctor” sounds like excellent advice, but it is based on the presumption that your doctor actually has the opportunity to practice good medicine. Economic forces reduce face time with patients, insurance companies create “pharmaceutical formularies” which limit prescribable drugs, Catholic doctrine gags what doctors can talk about in upwards of 50% of WA state clinics and hospitals, and now our legislators (HB 2009) hope to further limit doctors’ flexibility by eliminating the one carefully crafted and recognized medical ethic that protects all of us (including doctors) as we navigate this medical fiasco: informed consent.

While our medical system is falling apart, our ability to self-educate has never been better. The CDC puts high-quality, original medical research online, free to anyone with internet access. And they are not alone. The NIH (National Institute of Health), the FDA, the NCBI (National Center for Biotechnology Information), WHO (World Health Organization), and most universities conducting vaccine research (such as UC Davis).

 But becoming informed doesn’t do any good if withholding consent leads to a penalty. Kicking children out of school or childcare is a penalty. Firing people from their jobs is a penalty. Removing certification from foster parents is a penalty. Informed consent requires that the consent be given freely, not under coercion. And that’s why HB 2009 is bad for Washington State. HB 2009 is a blunt social tool that forces parents to choose between their child’s education and their child’s health; directly contradicting the informed consent ethic.

Think this doesn’t matter? Think again. In its most fundamental form, informed consent is what protects us from being experimented on like lab rats. Prior to the formation of Informed Consent Ethics, the U.S. Public Health Service conducted a study of the natural progression of untreated syphilis. In 1932, investigators in Alabama enrolled a total of 600 impoverished black sharecroppers in a study, offering free medical care, meals, and free burial insurance for their participation. But there was certainly no informed consent. Participants weren’t told that they had syphilis, nor were they told that their “bad blood” was a sexually transmitted disease that would put their wives and future children at risk. In the 1940’s it was discovered that penicillin was a cheap and effective cure for syphilis, but Tuskegee doctors actively concealed this lifesaving information from their patients. Only when a whistle blower leaked information to the press was the Tuskegee Syphilis Experiment ended - on November 16th of 1972.

Horror and dismay at this experiment (and many similar, less well publicized experiments), led to years of effort to develop the medical ethic we call informed consent.  To protect society, every person must be accorded the right to be fully informed and to give consent in an environment 100% free from coercion. HB 2009 violates informed consent by tying your medical decision to your child’s access to publicly funded education.  

It can be very tempting to try and use mandates to force people to make “good” decisions for the sake of public health. But is doesn’t work. Overall, public health is improved with cooperation, respect and increased awareness. Public health, education, and informed consent go hand-in-hand. They aren’t tradeoffs, they’re partners.

Informed consent also contributes to improved partnerships between patients and doctors. Without informed consent, patients tend to passively sit and wait for the doctor to make them healthy again. With informed consent, patients have a reason to get informed and involved in their own care. This tends to result in happier doctors, better health care, and improved public health.

So, let’s ask our elected representatives to avoid the convenient short cut, take the long view, and vote NO on HB 2009. Let’s ask them to remember the reasons for taking informed consent seriously. We are Washingtonians. We thrive on innovation and education and awareness and community responsibility. We cannot ignore the moral imperative to maintain informed consent. Instead, we must rise to the challenge to find new, better, and more effective methods for improving public health without squashing individual rights. We can do it!