QueenieBrown
Magazine.com
    Today's Real Human BEING Extraordinary

January 23rd, 2023, a local television news anchor informed viewers that a whistleblower leaked information about Ontario's Privacy Commission investigating one of the country's top universities. Allegedly, this well-respected research network collected over 600,000 patient data records without patient consent or knowledge. 

​

It was reported, this investigation was prompted by the filing of concerns made by metropolitan doctors during the summer of 2022. The claim stated, these physicians experienced "a massive data grab" of patients' electronic records. It would seem that Covid helped to provide an opportune opportunity for the expansion of patient information as most "doctor visits" occurred virtually since 2020. 

​

Apparently, this major university Research Network misinformed doctors of their reasons behind requesting patient files. As opposed to wanting the data for research purposes, as it indicated, it would appear, the patient information was stored for the purpose of re-sale...  shocking.  

​

But, is it? In this day of commercialism, is it shocking that an institution (surviving on funding) would capitalize on something received for free? This is where you must be informed that said Research Network denied having received monies for the "sharing?" of patient information - though they do admit to "supporting" several projects (approval by a research ethics board) that can access data from their server. 

 

That said, a more curious question looms over the accusations made by these doctors that the news report neglected to mention. The question is, "Who gave these doctors permission to hand over patient information, in the first place?" The report initially sounded like the infamous Research Network stole the data from doctors' computers. But, with closer attention, it becomes clear, the patient files were requested from the doctors, and the doctors then permitted the information to be taken. 

 

A cynical individual may wonder if the doctors' complaint stems from resentment that they were not included in the profit sharing of their patients' information. Maybe, the doctors realized they should have consulted their patients before releasing patient information, and this is a desperate attempt at backpedaling. Could they be throwing the Research Network under the bus to deflect from their own faux pas? 

​

As patients, should we request a viewing of the medical policy stating, once records are in a doctor's possession, they no longer belong to the patient? Do we patients enter into an agreement (unbeknownst to ourselves) consenting to our records being shareable at our doctors' discretion? Are we supposed to (know to) inform our doctors that "If a research network comes along wanting our data, we do not give consent to you releasing it?"  What exactly is a patient's right?

 

To some of us, this breach is not even mildly surprising, nor is its lack of news coverage. We are not at all surprised that doctors presume to take (isn't that stealing?)and give away our personal medical information for the use of "medical research" - without our permission and knowledge. We are not surprised because we are aware of the Henrietta Lacks story. We know, beyond the shadow of a doubt, patients have limited rights to our bodies let alone information related to our bodies - even if said information was gathered during (so-called) private consultations, tests, test results, treatments et cetera with our doctors. 

​

Henrietta Lacks (aka Loretta Pleasant) for instance, was a young mother living in Baltimore who attended the renowned John Hopkins Hospital. Mrs. Lacks had given birth to her fifth child at John Hopkins four months prior, and was experiencing severe hemorrhaging. The hospital found "a mass" in her cervix from which a sample was taken (along with healthy cells for comparison) then sent for tests.

​

Sadly, the large mass that bled upon touch was cervical cancer, and after months of treatments doctors hoped would kill the cancer, it had spread throughout the 31 year old's body, and Henrietta Lacks died.  

 

The cells taken from Henrietta Lacks were studied by a hospital researcher. It was discovered her cells were incredible because for the first time in history, human cells survived out of the human body for longer than just a few days! Not only did Henrietta's cells stay vibrant and grow, they reproduced at a high rate and could be multiplied over and over and over, again, without dying. This incredible reality earned Henrietta's cells the designation, "Immortal." Meaning, Mrs. Lacks' cells could undergo many experiments on a single "same" cell promoting continuity in tests, into perpetuity. Researchers could finally study how viruses worked; could test and re-test potential treatments and vaccines; develop vaccines, medicines and treatments, and improve upon them as necessary. 

 

Henrietta's cells were reproduced and shared with other medical professionals. This sharing of HeLa (Henrietta Lacks) cells is how the polio vaccine was developed. 

 

Henrietta was not well educated or financially favoured. She was a compassionate individual, "there for" those in need of care or a meal - in spite of her own circumstances. It is likely, Henrietta would have given permission for her cells to be used in the name of research. No one could have guessed how her cells would have advanced bio-medicine for the next hundred years, but, if she (then, in turn, her children) were granted the right of knowledge, the lives of her descendants could have been far more comfortable, indeed. Sadly, she (and her family) were not provided the opportunity of knowledge, let alone of granting permission. It was decades before her children had any idea how revolutionary and valuable their mother's cells/ their blood and DNA was.  

​

Patients should have the right to be informed and give consent to research, particularly in commercial cases. Families should have a right to share in profits if their bodies improves the advancement of science and enriches society.