The Human Genome Experiment and Its Implications for Health Care

The Human Genome Experiment and Its Implications for Health Care
History of Medical Technology: Implications of Changes in the Theory and Practice of Medical Care
Innovations in medical devices and health care technologies have generated new questions concerning the precise role that race, gender and other human differences had on the theory and practice of medical care in the 20th century and what the implications of these important trends will be going forward. To determine these implications with more precision, the purpose of this paper is to provide a review of the relevant literature concerning research and development of the modern understanding of sickle cell disease, the Civil Rights Act (and subsequent desegregation) in addition to Medicare and Medicaid, and the Human Genome Project and deoxyribonucleic acid (DNA). Following this review and analysis, a summary of the research and key findings concerning the foregoing issues are presented in the paper’s conclusion.
Review and Analysis
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 the research that was conducted on these populations groups was frequently highly unethical by any standards, but especially for the modern understanding of diseases (Thomas 2013). These negative experiences with the mainstream medical profession include such notorious incidents as the Tuskegee Syphilis Experiment that used unconsented African Americans as experimental subjects for 40 years during the mid-20th century (Smolin 2012). In this regard, Reverby reports that, “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 grisly experiences and the corresponding public backlash from the African American community are just 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) such as the drugs being distrusted nationwide at present. 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 but which also limited the focus on future research.
In addition, research and development and the modern understanding of diseases has been both facilitated by and constrained by governmental regulations and rigid oversight as well as an overarching profit motive on the part of the private sector, especially during the latter half of the 20th century. Despite the mutually conflicting nature of these powerful forces, though, significant progress in curing formerly deadly and debilitating diseases was still made during the 20th century, and many disorders such as polio and smallpox that had previously plagued humankind throughout history are virtually a thing of the past in most countries today (Greydanus and Leonov 2017). In this regard, Greydamus and Leonov emphasize that, “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, though, there are still some critical questions that remain unanswered concerning the nature of the role that is played by human difference factors such as gender and race on disease incidence and comorbidities. Complicating things even further for researchers is the manner in which 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 existing at one extreme or another. Likewise, a growing body of scholarship is also questioning the legitimacy of using race as a factor when conducting research into various diseases, but the fact remains that some diseases do in fact affect some demographic groups disproportionately such as sickle cell which is discussed below.
A hereditary disease, sickle cell is a type of blood disorder that current affects about 90,000 people in the United States. The disease can affect humans of any race, but African Americans suffer from this disease more often than the general population, and approximately 1 in every 500 African Americans have been diagnosed with the disease at present (George and Mitchell 2019). It is especially noteworthy that while anyone living anywhere can become afflicted with sickle cell disease, the disorder is particularly pronounced in the eastern region of North Carolina although the precise causes of this geographic concentration remains unclear at present (George and Mitchell 2019).
This finding underscores the need for additional research into the genetic basis for human diseases, a subject that has been the focus of investigation by the Human Genome Project (HGP) and its analyses of human DNA. The HGP was an ambitious, 13-year-long initiative that was concluded in 2003 which was the result of a collaborative effort between the U.S. National Institutes of Health and the U.S. Department of Energy together with contributions from the UK, Japan, France, Germany, and China, among others (About the Human Genome Project n.d.). The primary objectives of the HGP which have been successfully achieved were as follows:
· Identify all the approximately 20,500 genes in human DNA;
· Determine the sequences of the 3 billion chemical base pairs that make up human DNA;
· Store this information in databases;
· Improve tools for data analysis;
· Transfer related technologies to the private sector; and,
· Address the ethical, legal, and social issues (ELSI) that may arise from the project (About the Human Genome Project 3).
In the nearly quarter century since the mapping of the human genome has been completed, researchers have gained new insights into the DNA sequence compositions that cause some human diseases as well as the manner in which the immune-response operates (Lecellier, Charles-Henri; Wasserman 2019), and these findings that will inevitably have important implications for the ongoing fight against the Covid-19 virus.
Conclusion
The research was consistent in showing that despite the enactment of major legislation during the mid-20th century such as the Civil Rights Act and federal programs such as Medicare and Medicaid that eliminated gender and race as eligibility factors for access to high quality health care services, unethical medical experimentation using members of minority groups continued for two-fifths of the century. Likewise, the research also showed that research and development during the 20th century contributed to major advancements in the understanding of disease conditions such as sickle cell disease, and 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 extend the human lifespan well beyond the century mark barring accidents.
Works Cited
“About the Human Genome Project.” (.n.d.). Oak Ridge National Laboratory. [online] available: https://web.ornl.gov/sci/techresources/Human_Genome/project/index.shtml
George, Stephanie and Mitchell, Elizabeth. “Sickle Cell Disease: Relating Community Health and Heredity.” Science Scope (2014, December), vol. 38, no. 4, p. 33.
Greydanus, Donald E. and Leonov, Andrey. “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 (2017, January 1), vol. 10, no. 1, pp. 3-6.
Lecellier, Charles-Henri and Wasserman, Wyeth W. “Human Enhancers Harboring Specific Sequence Composition, Activity, and Genome Organization Are Linked to the Immune Response.” Genetics (2015, August), vol. 209. no. 4, pp. 1055-1061.
Reverby, Susan M. “Cultural Memory and the Tuskegee Syphilis Study: The Tuskegee Syphilis Study Is Surrounded by Illuminating Misconceptions-Myths That Cannot Be Blithely Dismissed Because They Actually Provide Some Insight into the Significance of the Study.” The Hastings Center Report (2001, October), vol. 31, no. 5, pp. 22-25.
Smolin, David M. “Tuskegee Syphilis Experiment, Social Change, and the Future of Bioethics.” Faulkner Law Review (2012, Spring), vol. 3,no. 2, pp. 229-234.
Thomas, Karen K. Deluxe Jim Crow: Civil Rights and American Health Policy, 1935-1954. Athens, GA: University of Georgia Press, 2011.