Rethinking consent in the age of Facebook and Cambridge Analytica

As physicians and particularly surgeons, we deal with consent all the time. The process can be complex particularly for pediatric surgeons because we obtain it from the parents and the participation of the child in that process varies. For example, it is not unusual to be confronted with a parent who wants their child to undergo an elective operation. Yet that child, being 15 years-old, may have zero interest in submitting themselves to that procedure. The other end of the spectrum can be vexing as well when you have a power of attorney/family member trying to make medical-legal decisions for a demented, legally incompetent elderly patient.

Consent is something physicians do well. The forms must be written in plain English and are only two pages long. Many institutions require that the procedure to be performed be stated in layman’s terms. For instance, a laparoscopic hernia repair is described as, “Repairing a hole in the muscular wall of the lower abdomen with an artificial mesh using tiny incisions and a camera.” The risks are stated in plain English too: “infections, bleeding, poking a hole in the bowel, etc. …” Furthermore, we physicians must verbally explain the procedure to the consentee and allow them to ask clarifying questions. If we do this over the phone, we must have a third party confirm that they understand what they are consenting to, and whether all their questions have been answered. Finally, you cannot consent someone for something that is unethical. Thus, procedures are only undertaken when the benefits outweigh the risks.

Of course, there is room for improvement.

For example, we could confirm the consentee’s comprehension of risks through a series of multiple-choice questions prior to them signing the consent form. Formalizing such a strategy into the electronic medical record would strengthen patient autonomy through teach-back and minimize the likelihood of misunderstandings and errors that lead to medical-legal hazard.

That being said, medical consent is the state of the art when compared to the “I agree” buttons we click on Facebook or any other electronic media tempting us with freebies in exchange for our personal information. With these electronic interactions, there is no face-to-face confirmation, there is no time allowed for questions and there is no interrogations of the depth of the consentee’s comprehension of the risks of what they are consenting to.

Do you think any of the 80 million people who answered the Cambridge Analytica app were appraised of the risk that their information would be specifically used to influence them during the last presidential election by taking advantages of their biases? And unlike a surgical consent where there can be unforeseen complications, this complication or risk was the exact intent of the Cambridge Analytica app. This would be the equivalent of me obtaining consent to shoot someone in the chest and tell them that the technology we are using is only to create a minor superficial wound on the skin all the while not mentioning the intent is to kill them.

Of course, it is not just social media. Have you ever tried to read the ten to twenty pages of legalese crap that barely passes as intelligible English in a prospectus from a mutual fund? All these documents are written with one objective in mind, to protect the consenter, not the consentee.

In health care, the consent form is there to protect both parties.

So where do we go now that this problem is out in the open?

How about mandating that social media companies and other personal data harvesters ask and document the responses to a series of multiple-choice questions on the risks prior to someone signing their consent form? This will determine the consentee’s level of understanding of what they are consenting to. And they must score 100 percent before they can hit the “I agree” button? Sure desperate and disinterested consentees can always game this process to their own detriment, but in the meantime, we need to protect the rest of society.

Peter F. Nichol is chief medical officer, Medaware Systems.

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