Alicic 1 Paper 2: The Immortal Life of Henrietta Lacks 1.

The metastasized cervical cancer that dotted Henrietta Lacks body with tumors

and left her possessed by the devil of pain himself at first glance originated from an HPV genome that unluckily inserted itself into an especially aggressive oncogene (1). The roots behind Lacks cancer, however, go beyond simply the diseases biological mechanisms. Ultimately, the factors that interacted in the development of Lacks illness stemmed from social conditions related to her poverty level, race, and gender. Each risk factor developed due to numerous social determinants, but her young age at first pregnancy can best be understood in terms of lack of education; her giving birth to multiple children can be understood in terms of concentrated poverty; and her infection with multiple STIs can be understood in terms of social norms and attitudes. Women who experience their first full-term pregnancies before the age of 17 have twice the risk of cervical cancer of those who wait until the age of 25 or older; Henriettas first child was born soon after she turned fourteen (2,3). It is pertinent that Lacks received only a sixth or seventh grade education before permanently leaving school (3). Her lack of access to educational opportunity may have left her at risk for early pregnancies. Trends today show a negative correlation between education and early pregnancy and birth rates among women with low education are higher than for those with secondary or tertiary education (4). Today, teenagers who are especially engaged in school are less likely to become pregnant (5). Though sexual education doubtlessly would have made early pregnancy less likely for teenagers of the era, it is unlikely that any meaningful sex ed was provided during the period that Lacks was alive.

Alicic 2 Education, by providing meaningful opportunities for engagement, helps to prevent pregnancy even when it is not explicitly sex-related. Though few of Lacks peers went on to college, simply being in school could have provided reason to avoid pregnancy at the early age of 14. Furthermore, educated women are generally more empowered in relationships and might have a greater say in delaying pregnancy (6). After her first pregnancy at age 14, Lacks gave birth to four other children and intended to have more (as reflected by her disappointment at realizing her that her treatments had made her infertile) (3). Women who undergo three or more full-term pregnancies are at increased risk for developing cervical cancer, perhaps due to hormonal changes or weakened immune systems during pregnancy (2). Today, the interplay between concentrated poverty and fertility rates is a know exacerbator of global poverty: women bear many children in part to add labor and security to their households, and then struggle to support those children (7). Lacks was reared in a poor, agrarian society, and the farm workload and infant death rates made having large numbers of children the norm (8). Even when Lacks and her family moved to an industrial center, their poverty may have made having more children seem like a replacement for a meager social security net (8). Over time, Lacks was infected with at least two STIs: syphilis that likely affected the health of her children and gonorrhea that was later superimposed on *her+ radiation reaction (3). The presence of other sexually transmitted infections increases the risk of contracting HPV, which in turn can lead to cervical cancer (9). Lacks being infected with STIs may be linked to gender-related social norms and attitudes of the time. Though

Alicic 3 Skloot never explicitly states it, it is most likely that Lacks was infected with STIs due to her husbands extramarital relations. It is likely that social norms in Lacks community made such behavior more acceptable for men, perhaps in part because as long as poor men are denied sources of self-esteem and income it is likely they will cling even more tenaciously to their superior status (8). One study from Vietnam, though not geographically relevant, explains a common male-female dynamic: For men, who are believed to have a natural sexual drive, [premarital and extramarital sex] are socially sanctioned. Women are expected to be faithful and devoted to familial duties and engaging in these activities may have severe physical and social repercussions (10). Day Lacks adultery was seen as almost expected and natural, and as such put Henrietta Lacks at increased risk. Compounding that risk is that fact that STI prevalence (at least today) is higher among African American communities, placing even those with one partner at greater risk (11). The social determinants that shaped Henrietta Lacks life and often meant a greater struggle for herself and her family played an undeniable role in her early death due to cervical cancer. 2. Bobbette Lacks, when describing her communitys attitude towards Johns

Hopkins during her childhood, makes the seemingly outlandish statement that we werent allowed to go anywhere near Hopkins. When it got dark and we were young, we had to be on the steps, or Hopkins might get us (3). This distrust towards the medical community was based on years of mistreatment. At Johns Hopkins, the notion that black people were unknowing experimental subjects was not at all unfounded: researchers

Alicic 4 had, without patient consent, sampled the blood of children to test genetic predispositions to criminal behavior and had exposed other children to lead (3). The maltreatment spread beyond this hospital, however, as shown by the Tuskegee Syphilis Study. The abuse and exploitation of the African American men enrolled in the study had impacts that are still felt in the interactions of African American communities with the health care system today. The central ethical concern in the Tuskegee study was a lack of informed consent. The men in the study were told that they were undergoing treatment for bad blood and were not informed that they had syphilis or given inf ormation about what syphilis was, how it was transmitted, or how it could be treated (12). In an era when patients rarely questioned physicians, the impoverished, uneducated men in the study did not ask questions and instead accepted incentives such as free physical exams, hot meals, and rides into town on clinic days, plus fifty-dollar burial stipends for their families when *they+ died (3). During the study, researchers made efforts to preserve the illusion of providing treatment while preventing the men from receiving proven treatments, as a result knowingly causing them harm (12). Despite the studys contradicting the Nuremberg Codes demands on informed consent and avoiding harm to subjects, numerous panels (including one predominantly African American panel) allowed the study to continue and public backlash did not occur until a reported reveled the study to the general public in 1972 (12). After the study was revealed, the news spread like pox through black communities; doctors were doing research on black people, lying to them, and watching

Alicic 5 them die (3). Previous mistrust of the medical system was reinforced, and the Tuskegee study remains part of a body of evidence that leaves African Americans more likely to be mistrusting of health care providers, less likely to participate in studies, and wary of governmentally-run public health measures. Tuskegee alone did not shape the attitudes of contemporary African Americans, though it doubtlessly played a role. Since the direct effect of the Tuskegee study is difficult to observe, numerous studies suggest that conversations about African Americans and medical professionals must extend to include racial inequities in access to particular technologies andcritical questions about the role of racism in m edical decision making (13). Much of the mistrust of physicians, researchers, and public health professionals stems from a greater mistrust of societal institutions that have historically disfavored and abused African Americans. A history of slavery and racism led to mistrust of the system and the failures of some of the promises of the civil rights movement (in terms of equality of opportunity) led to the development of conspiracy theories about Whites (the government) against blacks (14). Today, race and not necessarily knowledge of the Tuskegee study is an important predictor of mistrust of medical care (13). This mistrust manifests itself as lower levels of patient satisfaction with care, decreased participation in health research and less willingness to donate blood or cadaveric organs (13). Many African Americans view informed consent as a protection for physicians and researchers rather than a protection for patients (12). As such, it can be difficult to encourage African Americans

Alicic 6 to participate in studies. In terms of public health initiatives and governmental interventions, fear of genocide is noted in black communities (13). In order to ensure high-quality medical care, adequate representation in studies, and effective public health interventions for African American communities, a sensitive, effective way of working with communities in addressing the history of slavery, racism, and abuses at the hands of researchers must be addressed. The legacy of events such as the Tuskegee Syphilis Study still reverberates in African American communities and leaves their health at a disadvantage.

Alicic 7

References 1. Nodell, B. (2013, August 7). UW researchers report on genome of aggressive cervical cancer that killed Henrietta Lacks. Retrieved from http://www.washington.edu/news/2013/08/07/uw-researchers-report-ongenome-of-aggressive-cervical-cancer-that-killed-henrietta-lacks/ 2. What are the risk factors for cervical cancer? (2013, April 11). Retrieved from http://www.cancer.org/cancer/cervicalcancer/detailedguide/cervical-cancerrisk-factors 3. Skloot, R. (2010). The immortal life of Henrietta Lacks. New York, NY: Crown. 4. Adolescent pregnancy. (2012 May). Retrieved from http://www.who.int/mediacentre/factsheets/fs364/en/ 5. Teen Pregnancy and Education. (2010 March). Retrieved from http://www.thenationalcampaign.org/why-it-matters/pdf/education.pdf 6. Empowering women through education. Retrieved from http://www.unfpa.org/gender/empowerment2.htm 7. Population matters: poverty. (2011). Retrieved from http://www.populationmatters.org/wp-content/uploads/D15Poverty.pdf 8. Lappe, F.M., Collins, J., Rosset, P. (1998 October). Poverty and population growth: lessons from our own past. Retrieved from http://www.globalissues.org/article/206/poverty-and-population-growthlessons-from-our-own-past 9. Cervical cancer: risk factors. (2013 June 28). Retrieved from http://www.mayoclinic.com/health/cervical-cancer/DS00167/DSECTION=riskfactors 10. Go, V.F., Quan, V.M., Chung, A., Zenilman, J., Hahn, V., Celentano, D. (2002). Gender gaps, gender traps: sexual identity and vulnerability to sexually transmitted diseases among women in vietnam. 11. African americans and sexually transmitted diseases. (2011 April). Retrieved from http://www.cdc.gov/nchhstp/newsroom/docs/AAs-and-STD-Fact-Sheet042011.pdf 12. Parker, L., Alvarez, H. The legacy of the Tuskegee syphilis study. Retrieved from http://www.asph.org/userfiles/module2.pdf 13. Gamble, V. (1997 November). Under the shadow of tuskegee: african americans and health care. Retrieved from http://acs.etxahec.org/LinkClick.aspx?fileticket=gPGORiIYh0c%3D&tabid=7 9&mid=410 14. Thomas, S., Quinn, S. (1991 November). The Tuskegee syphilis study, 1932 to 1972: implications for hiv education and aids risk education programs in the black community. Retrieved from

Alicic 8 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1405662/pdf/amjph00211 -0136.pdf