Author: Aurelie Chuong, Treasurer - [email protected]
Having worked in the pharmaceutical industry, as soon as I got hired as an intern, I was given a form to sign giving the company all rights to intellectual property (IP). In laymen's terms, any idea and research findings developed while employed at the company becomes company property. The same goes for academic research. Here are Purdue's IP policies for those who are interested.
But what about Medical Records?
Recently, on my way to campus, the Diane Rehm Show (on NPR) was on and the discussion topic I caught was "Who owns medical records? " Is it the patient, the hospital, the doctor(s)?
I immediately thought of Henrietta Lacks, whose cervical cancer cells, harvested for a biopsy and kept alive without her consent are now a household item in any mammalian cell culture lab. Rebecca Skloot chronicled Henrietta's life and the ethical implications behind that fateful biopsy and is a must-read for scientists and public health advocates alike. These ethical issues most recently (August 2013) revolved around what genetic information obtained from the sequencing of the HeLa cells could be made available to research scientists without threatening the Lacks' privacy, specifically, their disease risk and/or predisposition due to genetic mutations.
In my opinion, physicians are scientists, with patients as their subjects, medical tests as their experiments in order to determine a medical diagnosis and devise a treatment plan. They work for hospitals, so if they act like academic institutions, wouldn't that mean that the hospital technically owns their findings and therefore medical records since in a way, they are the physicians' lab notebooks? But what about the patients? It is their body, their health, their life. Yet, I paid over $80 to get a copy of my hospital medical, in addition to hospitalization costs. If I own them, shouldn't I get access to them for free?
In all honesty, there is no easy answer to the question of who owns medical data. As our society moves towards electronic health records (EHRs), information technologists will be involved to build the databases as well as the connections for communication between the various databases, so will that mean that the information technology companies will also be part of the argument? Also, the risk of having that information being hacked will increase despite the Health Insurance Portability and Accountability Act (HIPAA, short summary of the act here).
What do you think? Who do you think should own medical records??
Having worked in the pharmaceutical industry, as soon as I got hired as an intern, I was given a form to sign giving the company all rights to intellectual property (IP). In laymen's terms, any idea and research findings developed while employed at the company becomes company property. The same goes for academic research. Here are Purdue's IP policies for those who are interested.
But what about Medical Records?
Recently, on my way to campus, the Diane Rehm Show (on NPR) was on and the discussion topic I caught was "Who owns medical records? " Is it the patient, the hospital, the doctor(s)?
I immediately thought of Henrietta Lacks, whose cervical cancer cells, harvested for a biopsy and kept alive without her consent are now a household item in any mammalian cell culture lab. Rebecca Skloot chronicled Henrietta's life and the ethical implications behind that fateful biopsy and is a must-read for scientists and public health advocates alike. These ethical issues most recently (August 2013) revolved around what genetic information obtained from the sequencing of the HeLa cells could be made available to research scientists without threatening the Lacks' privacy, specifically, their disease risk and/or predisposition due to genetic mutations.
In my opinion, physicians are scientists, with patients as their subjects, medical tests as their experiments in order to determine a medical diagnosis and devise a treatment plan. They work for hospitals, so if they act like academic institutions, wouldn't that mean that the hospital technically owns their findings and therefore medical records since in a way, they are the physicians' lab notebooks? But what about the patients? It is their body, their health, their life. Yet, I paid over $80 to get a copy of my hospital medical, in addition to hospitalization costs. If I own them, shouldn't I get access to them for free?
In all honesty, there is no easy answer to the question of who owns medical data. As our society moves towards electronic health records (EHRs), information technologists will be involved to build the databases as well as the connections for communication between the various databases, so will that mean that the information technology companies will also be part of the argument? Also, the risk of having that information being hacked will increase despite the Health Insurance Portability and Accountability Act (HIPAA, short summary of the act here).
What do you think? Who do you think should own medical records??