Blaming the Victim–Genetically

This autumn [2010] sees the start of the screening of Division 1 student athletes for “sickle cell trait,” as mandated by the National Collegiate Athletic Association.  From 2000 to 2009, seven college football players who were genetic carriers of sickle cell anemia have died during extreme workouts (see http://web1.ncaa.org/web_files/health_safety/SickleCellTraitforCoaches.pdf where the workouts are referred to as “conditioning activities”).

These student athletes did not have sickle cell anemia. A person must have two matching genes, both coding for altered hemoglobin, to have the disease. Having only one such gene, the students who died were not afflicted with sickle cell disease.

The Facts:

• “Sickle cell trait” is not a disease. It is an unusual case of a label being applied to the situation of having one abnormal allele when two are needed to have the genetic disorder involved.
• For a reader-friendly explanation of the genetics involved go to: http://sickle.bwh.harvard.edu/scd_inheritance.html Here you will notice that a person with a normal hemoglobin gene from one parent and a sickle cell gene from the other parent is said to have “a condition called sickle cell trait.” See another instance of this terminology at http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhatIs.html .
• It is misleading to call the situation of having one altered gene a trait or to say the person has a condition.
• “About 2 million Americans, or 1 in 12 African Americans carry the sickle cell trait,” or one sickle cell gene
• “sickle cell disease [two genes] occurs in about 1 in every 500 African-American births
• and 1 in every 1000 to 1400 Hispanic-American births.” (http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/sca.shtml  Emphasis added; note that by simply adding the word “carry,” the ORNL statement helps avoid misunderstanding.)

Thoughts about the Facts:

• Is it likely that this unusual terminology would be applied to persons with one sickle cell gene if they were primarily Caucasians, rather than Blacks?
• The only similar case is that of “thalassemia trait” (or “thalassemia minor”). Thalassemia is also a blood disorder which, like sickle cell anemia, mainly affects populations frequently stigmatized—in this case persons from the Mediterranean area.

o   In the 1920s, the restriction of immigration from Southern European nations such as Greece and Italy was spurred on by fears of pollution of the American gene pool.

o   In 1924 Harry Laughlin of the Eugenics Record Office presented testimony to the U.S. House of Representatives Committee on Immigration and Naturalization regarding the “intellectually and morally defective immigrants primarily from eastern and southern Europe,” illustrating his commentary with a photo of an Italian mother and daughter (Lombardo, P. (n.d.). Eugenic laws restricting immigration. http://www.eugenicsarchive.org/eugenics/list2.pl, p. 6).

My Hypothesis:

• I suspect that sickle cell and thalassemia are the only instances of labeling the carrier state with unique terminology.
• A search of PubMed at http://www.ncbi.nlm.nih.gov/pubmed for the term “trait” recommended “Also Try sickle cell trait and thalassemia trait” but no others.

So What?

• Discrimination on the basis of one’s genetic make-up is a realistic concern and can extend even to whether the carrier state is pathologized, labeled, and referred to as a health “condition.”
• Significantly, student athletes may sign a waiver releasing NCAA and their university from liability instead of being tested for sickle cell “trait.”
• The implications of this are discussed in an article that appeared in the September 9, 2010, issue of the New England Journal of Medicine, 363 (11). It examines the decision to screen student athletes for “sickle cell trait.” The lead author, Vence L. Bonham, J.D., is an Associate Investigator of the Social and Behavioral Research Branch of the National Human Genome Research Institute.
• As the NEJM article points out

o   the waiver alternative hints that reducing legal liability is NCAA’s main goal.

o   the testing program is essentially an experiment for which it is impossible to grant voluntary consent because students need athletic scholarships which depend on maximal performance and cooperation.

o   the entire testing initiative would be rendered unnecessary were the eminently reasonable recommendations for sickle cell anemia carriers during conditioning sessions extended to all athletes.

• These simple precautions can be found at  http://web1.ncaa.org/web_files/health_safety/SickleCellTraitforCoaches.pdf
  
• A not-so-simple, detailed explanation of various studies and findings by John Kark, MD, is at http://sickle.bwh.harvard.edu/sickle_trait.html