Lack of communication may be to blame for unethical practices

Marmot’s definition of poverty has been resonating in my mind:  poverty is more than lack of money; it is also a lack of opportunity, empowerment, security, and dignity.  This definition of poverty is just as complicated as the one with which we tried to come up for health in our first meeting and is very closely tied to human rights.  Oppenheimer et. al wrote in 2002, “it is not just the kind of deprivation that raises human rights concerns that affects life prospects, but hierarchy itself, no matter how subtle the steps of differentiation.”  They add “one of the most enduring contributions of the human rights perspective on public health has been its illumination of the ways in which stigmatization and discrimination have been pathogenic forces.”  First of all, one’s financial status dictates many aspects of life – the amount of money you have or make limits or enables where one lives, one’s purchases and activities, and sometimes one’s social circle.  Second, I was surprised that Oppenheimer called stigmatization and discrimination pathogens, as my scientific mind automatically thinks of a disease-causing bacterium or virus.  There are no vaccines or medicines for to treat stigmatization and/or discrimination!  So the challenge now becomes to address those issues.  The Nuremberg code, the Declaration of Helsinki, and the Belmont were written to ensure social value, scientific validity, fair subject selection, acceptable risk to benefit ratio, required informed consent of subjects, and respect to subjects (Skolnik, Ch. 4).  The Tuskegee experiment contributed scientifically but was unethical.  Without it, the progression of syphilis would not have been determined in humans, not to say that the stages of the disease could not have been determined in another model system (i.e. mice or rabbits), but there may have been different results.  The unethical aspect of the study was that the researchers were not honest about their intentions as the subjects never knew their true diagnosis and did not receive appropriate medical treatment despite the knowledge of penicillin as a cure. 

I am not sure if the researchers did not want to explain in laymen’s terms what the study entailed; I can empathize when "non-science people" asked what I did for research and all I could really say was “I’m working on bacteria in hopes to find a protein to target with antibiotics.”  I also wanted to bring up the Henrietta Lacks story here.  In short, Henrietta’s cells were biopsied at Johns Hopkins while she received radiation treatment for cervical cancer.  Her cells were the first cells to successfully be cultured in a laboratory environment (HeLa cells), even though she had never given consent for research to be performed on her tumor. News of a human cancer cell line that could be used in vitro (outside the body) spread like wildfire.  While researchers benefited from their findings using HeLa cells academically and financially, the Lacks family struggled financially and health-wise as Rebecca Skloot’s book chronicles Henrietta’s story through interviews with her children.  Henrietta’s daughter thought her mother was still alive (despite having attended her mother’s funeral as a young girl) and she even thought her mother was sent to space when only a vial of cells was placed in a rocket.  I found that the most difficult part in explaining research is the jargon (vocabulary), similar to learning a new language where sometimes, the right word just does not exist in one language.  Going back to the poverty and equity question, I don’t think experts (scientists/doctors/researchers) mean to be unethical.  They, especially those who don’t have people skills, may think that their time is better spent on scientific problems/curing the next patient, which lead to skipping over crucial details and therefore unethical practices.  What do you guys think?