The impossibilities of informed consent

IMG_2466I’ve reprinted below an excerpt from a journal article I’m referencing in my upcoming presentation at the Canadian Bioethics Society conference, in Vancouver. It’s pretty much my whole argument (that informed consent is a faulty notion), summed up simply in 2 paragraphs.

“Supposing that informed choice is possible, Foucault’s understanding of people also affects what information is needed in order to give informed choice. That information would include how cultural practices are endeavoring to form people and how various health care interventions further society’s aims. People’s personal concerns about their bodies are irrelevant from the point of view of society. That information, too, should be conveyed and understood.

Moreover, in such a social system as Foucault describes, one may argue that the practice of informed choice is misguided. It is not for the individual to give an informed choice since the individual’s body is appropriated by the power relations forming her. By pursuing informed choice practices, health care providers provide an ideological cover to the political technology of the body.”

Ells, Carolyn . “Foucault, Feminism, and Informed Choice.” Journal of Medical Humanities 24.3/4 (Winter 2003): 221. Print.



  1. So interesting!!! Foucault’s view applied to informed choice is pretty fatalistic and perhaps there really is no such thing as informed choice (how can we be informed if the vested interest of those in the know is NOT TO TELL?)
    But that said, people are people and the squeaky wheel gets the grease. If parents (for example) give great worth to the life and health of their child, they can seek information elsewhere and make a somewhat informed choice anyway (in today’s world, there are multiple sources of knowing). So, maybe our reality is and should be? ‘somewhat informed’. Hmmmm……

    • Thanks for commenting Donna! Indeed, parents could place less emphasis on one source of information and attempt to balance it with a variety of voices.

  2. I’m not sure how this relates in a practical way to all of the decisions that parents of kids with disabilities are faced with. Shouldn’t we be working to educate health professionals on the biases that are inherent in many of the decision-making processes? On the biases that they, as professionals with a certain training, bring to the table in these discussions? Or should we just throw up our hands and say — oh well, there is no informed consent. This may be a fun philosophical discussion, but what’s the point if it doesn’t have any bearing on improving people’s lives who have to use the health care system? We’ll never have a perfect system. But why would we allow biases that have been studied (like quality of life in relation to people with disabilities — physicians say it’s zero, and people with disabilities rate it highly) to continue unabated?

    • Hi Louise,

      Not sure you read the quote closely. It could be reworded as follows:

      “Informed consent is meaningless unless the patient understands the context in which information is given. Healthcare interventions have their own agendas, which do not necessarily match those of the patient. There can be no informed consent unless the patient understands that our surrounding culture ‘forms’ us. It is foolish to think we are somehow ‘informed’ because of what a doctor tells us.” – Jennifer Johannesen

  3. Hi Jen — I just don’t see how it relates to how we make decision-making better?

    How will this understanding be translated into something that benefits a parent’s ability to make the best decisions for their child when those decisions are very complicated (other than to be given as a warning that you can’t rely on doctors to have your child’s, or your, best interests at heart)?

    And in cases where prenatal genetics counselling is offered (and paid for by us) and it’s purported to be balanced? It will never be perfect, but shouldn’t we attempt to make it less biased? It seems like all of the weight of the problem is put on the parent/patient and not on improving the system. Perhaps I’m not understanding it properly.

    • “I just don’t see how it relates to how we make decision-making better?”

      If we were to apply the principles of this idea to a clinical setting, the clinician would inform the patient about all of the cultural biases working against her notion of autonomy/free will, conspiring to get her to buy in to a specific perspective. The clinician would say,”All of this information and process is designed to get you to identify and eliminate anomalies. Now here is what I think you should know, but keep in mind that I was trained in this system.” Then, the patient finally has a hope of weighing the information correctly.

      It is absolutely the parent/patient’s problem to research and filter out information relevant to them. In many respects the system itself works just fine because it does exactly what it’s set up to do. As Single Dad pointed out in a previous comment, ‘wellness’ has never been medicine’s objective. People should define their own priorities and find the supports that help them get there.

      • Hi Jen — Your scenario presumes that the patient/parent is educated. When I had prenatal testing I knew nothing about disability.

        To say medicine has never been about wellness I think is defeatist. Medicine is a reflection of what we want it to be. Tons of money is invested in wellness initiatives. If it’s not about wellness, why is the money being invested?

        There’s a huge movement in medicine right now to use storytelling to help doctors/nurses etc. understand their emotional reactions to their work and to improve their ability to see other perspectives so they can be more emotionally present for their patients/families. That is all about wellness for families and providers.

        Family-centred care is about partnering with families to provide the care that best meets their unique needs. Not to drop them and tell them to sink or swim.

        What about parents who don’t speak English and don’t have access to a computer? How are they going to get their information?

  4. I have never really accepted the notion of informed consent (in the medical context) as it is offered. Obviously the doctor or heatlhcare provider wants you to consent. They would not give you such a document / request unless they “consented” to do the procedure. So are they not automatically biased? Your decision needs to be based on all the information about what you are consenting to, the pros and cons, but independent information or even oppositional information. Research consent is even more difficult with it’s built in notions of deception at times (Milgram in its aftermath).

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