Human Genome Project and Health Care Equity Implications

Introduction

Innovations in medical devices and health care technologies have generated new questions concerning the precise role that race, gender, and other human differences played in the theory and practice of medical care during the twentieth century, and what the implications of these important trends will be going forward. To address these questions, this paper reviews the relevant literature on the modern understanding of sickle cell disease, the Civil Rights Act and subsequent desegregation, the creation of Medicare and Medicaid, and the Human Genome Project and deoxyribonucleic acid (DNA). A summary of key findings is presented in the conclusion.

Civil Rights Legislation and Health Care Access

Prior to the passage of the Civil Rights Act of 1964, access to high-quality health care was often limited for members of minority groups in the United States, and research conducted on these populations was frequently unethical by any standard — and especially so by the modern understanding of medical ethics (Thomas 2013). These negative experiences with the mainstream medical profession include such notorious incidents as the Tuskegee Syphilis Study, which used unconsented African Americans as experimental subjects for forty years during the mid-twentieth century (Smolin 2012). As Reverby reports:

"Tuskegee, Alabama, will be forever linked in America's collective memory to the Tuskegee Syphilis Study. In the counties surrounding this small southern community, the U.S. Public Health Service ran a forty-year study, from 1932 until 1972, of 'untreated syphilis in the male Negro,' while telling the men in the study that they were being 'treated' for their 'bad blood'" (23).

These grim experiences, and the corresponding public backlash from the African American community, are part of the reason many members of minority groups remain skeptical about participating in clinical trials or even receiving potentially life-saving vaccines (Thomas 2013). The passage of the Civil Rights Act was followed by the creation of the Medicare and Medicaid health care programs in 1965, which further eliminated gender and race as eligibility factors for high-quality medical care, though these programs also shaped and in some respects limited the focus of future research.

Research, Regulation, and Disease Eradication

Research and development, as well as the modern understanding of diseases, have been both facilitated and constrained by governmental regulations, rigorous oversight, and an overarching profit motive on the part of the private sector — particularly during the latter half of the twentieth century. Despite the mutually conflicting nature of these powerful forces, significant progress in curing formerly deadly and debilitating diseases was still achieved during the twentieth century. Many disorders such as polio and smallpox that had previously plagued humankind throughout history are now virtually eliminated in most countries today (Greydanus and Leonov 2017). As Greydanus and Leonov emphasize, "Not only has smallpox been removed from the earth except for stockpiles of the deadly smallpox virus, additional vaccines that were developed in the late 19th–21st centuries have dramatically improved health for Homo sapiens" (4).

Notwithstanding this significant progress, critical questions remain unanswered concerning the role played by human-difference factors — such as gender and race — in disease incidence and comorbidities. Complicating matters further for researchers is the fact that the concept of gender has become far more fluid in recent years, with many authorities suggesting that gender and sexuality exist along a continuum rather than at fixed extremes. Likewise, a growing body of scholarship questions the legitimacy of using race as a variable in disease research. The fact remains, however, that some diseases do disproportionately affect certain demographic groups, as the case of sickle cell disease illustrates below.

Conclusion

The research was consistent in showing that despite the enactment of major legislation during the mid-twentieth century — such as the Civil Rights Act and federal programs such as Medicare and Medicaid that eliminated gender and race as eligibility factors for high-quality health care services — unethical medical experimentation using members of minority groups continued for two-fifths of the century. Likewise, the research showed that scientific developments during the twentieth century contributed to major advancements in understanding disease conditions such as sickle cell disease. The completion of the Human Genome Project in 2003 has provided researchers with vitally important data about human DNA that holds the promise to eradicate even more diseases and to extend the human lifespan well beyond the century mark, barring accidents.

Works Cited

"About the Human Genome Project." N.d. Oak Ridge National Laboratory. Available: https://web.ornl.gov/sci/techresources/Human_Genome/project/index.shtml

George, Stephanie, and Elizabeth Mitchell. "Sickle Cell Disease: Relating Community Health and Heredity." Science Scope, vol. 38, no. 4, December 2014, p. 33.

Greydanus, Donald E., and Andrey Leonov. "The Legacy of Smallpox and Polio Vaccines: A Pandora Box or Gordian Knot in the 21st Century?" International Journal of Child Health and Human Development, vol. 10, no. 1, January 2017, pp. 3–6.

Lecellier, Charles-Henri, and Wyeth W. Wasserman. "Human Enhancers Harboring Specific Sequence Composition, Activity, and Genome Organization Are Linked to the Immune Response." Genetics, vol. 209, no. 4, August 2015, pp. 1055–1061.

Reverby, Susan M. "Cultural Memory and the Tuskegee Syphilis Study." The Hastings Center Report, vol. 31, no. 5, October 2001, pp. 22–25.

Smolin, David M. "Tuskegee Syphilis Experiment, Social Change, and the Future of Bioethics." Faulkner Law Review, vol. 3, no. 2, Spring 2012, pp. 229–234.

Thomas, Karen K. Deluxe Jim Crow: Civil Rights and American Health Policy, 1935–1954. University of Georgia Press, 2011.