Informing and Compensating Patients Involved in Research

In both the New York Times and Hannah Landecker chapter titled HeLa, we are presented with the story of Henrietta Lacks and her popularly know immortal cells, HeLa. The HeLa cell-line has generated quite a buzz since its discovery back in 1951 when Dr. George Gey, a Johns Hopkins researcher, received a sample of her tumor to observe. Over the course of time, the HeLa cell-line has been used in order to produce drugs for polio, leukemia, the flu, and Parkinson’s. However, the cell-line was commercialized and made millions in profits, and the Lacks family did not receive a penny from these profits. There are two major concerns here. First, is it acceptable for doctors to be able to take samples of patients’ bodily materials and hand them over for research without receiving full consent from patients that there is a possibility that their bodily material could be used by researches to produce drugs? Secondly, should patients either well informed or not receive some share of the profits if their bodily materials are in fact used and produce drugs that are sold on the market?

In concern to the first issue of doctors needing to receive full consent from patients to use samples from their body for research, my personal opinion is that doctors should have talks with patients telling them that first they are going to send a sample from the patient to a research facility, and secondly that there is a chance that this sample could be used to produce drugs and could be sold on the market. I think that this would help to give patients and their families more of a say as to whether or not they will allow for research to be done. In the Landecker article, she states that patients do give their permission for research to possibly happen in various forms of paperwork that they must sign. My problem with this that it’s paperwork that must be signed or else a patient is not going to be able to proceed to get treated. This is very much identical to terms of contracts that we see frequently when installing programs on our computers like i-Tunes, and our general mentality is to just click on the I agree to these terms in order to proceed. So I think that doctor and patients having a talk in which the doctor spells out everything for the patient will not only help the patient in making their decision but also to help avoid legal ramifications when patients are not well informed by their doctors.

The next concern is that of patients receiving some percent of profits made from drugs that were produced from their bodily materials. As we already know, HeLa has produced drugs for various diseases and subsequently made millions in profits none of which the Lacks family has received. Another case of this was stated in the New York Times article in which a patient, John Moore was suing his doctor upon finding out that his doctor was trying to receive a patent on Mr. Moore’s cells which created a cell-line called Mo which had generated a “market value estimated at $3 billion.” Both of these are prime examples of patients that have had their cells involuntarily taken from them for the use of research in order to produce drugs that have made massive amounts of money and not a penny going to the patient in which the cells belonged to. I find it very unsettling to read about cases like these in which researches produce drugs to benefit mankind and reap the profits of their creations, but the source of these drugs are not compensated for their contributions. I do not there is specific means as to how we should solve this problem of patients receiving some portion of the profits, but I ardently believe that they are entitled to the money because after all it was their cells that researchers needed in order to produce these drugs, and without them they might not have been able to. If left unresolved, what we will have a major lawsuits against pharmaceutical companies in which patients will be seeking very large sums of money, and we will see many of these cases reach state Supreme Courts.

Jordan Rodriguez