Informed Consent
Informed Consent is just what it sounds like--the basic principle that patients have the right to be completely informed before they undergo any medical procedures. When do people encounter informed consent?
- Before chemotherapy or radiation
- Before surgery
- Before blood tests, flu tests, and other diagnostics
- Before almost anything that happens in a doctor's office
Henrietta's Case
On February 6, 1951, Henrietta Lacks signed the following consent form:
"I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of:_______________________." (Skloot, 31)
In this case, Johns Hopkins did well; they made sure that Henrietta knew what was about to take place. In fact, this procedure (the consent form, not the cancer treatment) may even be on par with today's standards. In 1951, virtually nothing about this consent form was lacking or haphazard.
Many questions arise from Henrietta's experience. Should she have been told that her cells were being used for research? Should families be involved in informed consent of the patient? If so, in what cases? Should informed consent require that patients know what is being done with their cells, even after they have been removed from the patient's body?
The ghost of Henrietta's informed consent, interestingly enough, lived on long beyond her death. In the 1970s, when researchers were attempting to find "genetic markers" for HeLa cells (Skloot, 181), blood samples were taken from the Lacks family--though they agreed to having blood drawn, they were not informed of what their blood would be used for. The medical information derived from these tests was published without the consent of the Lackses.
On February 6, 1951, Henrietta Lacks signed the following consent form:
"I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of:_______________________." (Skloot, 31)
In this case, Johns Hopkins did well; they made sure that Henrietta knew what was about to take place. In fact, this procedure (the consent form, not the cancer treatment) may even be on par with today's standards. In 1951, virtually nothing about this consent form was lacking or haphazard.
Many questions arise from Henrietta's experience. Should she have been told that her cells were being used for research? Should families be involved in informed consent of the patient? If so, in what cases? Should informed consent require that patients know what is being done with their cells, even after they have been removed from the patient's body?
The ghost of Henrietta's informed consent, interestingly enough, lived on long beyond her death. In the 1970s, when researchers were attempting to find "genetic markers" for HeLa cells (Skloot, 181), blood samples were taken from the Lacks family--though they agreed to having blood drawn, they were not informed of what their blood would be used for. The medical information derived from these tests was published without the consent of the Lackses.
The Family's Role
Henrietta's family (pictured above) played a relatively small role in her medical decisions. In fact, Henrietta herself did not inform her family of her condition for a significant amount of time ("She simply went on with her day as if nothing had happened, which was just like her--no sense upsetting anyone over something she could deal with herself." (Skloot, 31)). The role of Henrietta's family in her medical decision making only became clear near and after her death--David Lacks (Henrietta's husband) authorized Johns Hopkins to perform an autopsy. However, this was done informally ("I didn't sign no papers. I just told them they could do a topsy. Nothin else. Them doctors never said nuthin about keepin her alive in no tubes or growin no cells. All they told me was they wanted to do a topsy see if they could help my children." (Skloot, 164)) Here, David Lacks raises some valid questions regarding the family's role in the healthcare of a patient.
Opinion Corner: What role would you want your family to play in your healthcare? Currently, there are many laws regarding the age and capacity of a person to make their own educated medical decisions--parents often act as proxies for their children. To best summarize, we might say this: Unless the patient is incapacitated, deceased, or too young by the state's standards, all patients should have the power to regulate the state of their healthcare and general well-being.
- After cells have been removed from a patient, should the patient's family have any control over the cells?
- Which family member's word should carry the most weight in questions regarding the patient?
- How much should the family know about the patient's healthcare?
- Where does the family's domain start, and where does it end?
Opinion Corner: What role would you want your family to play in your healthcare? Currently, there are many laws regarding the age and capacity of a person to make their own educated medical decisions--parents often act as proxies for their children. To best summarize, we might say this: Unless the patient is incapacitated, deceased, or too young by the state's standards, all patients should have the power to regulate the state of their healthcare and general well-being.