With approximately 1 out of 7 people living in the United States with HIV unaware of their infection, case studies such as this one are pertinent to the medical field. (aids.org, 2019).
Case study one exhibits many potential benefits and risks associated with it. Researchers used retrospective data collected from government funded clinics in the Midwest region to determine race differences in HIV infected persons. This study was conducted with anonymity of participants in the time frame of January 2010- December 2011. Variables also considered were race, ethnicity, gender, social economic status and educational level.
The data collected in this study could largely impact the Midwest region of the United States. This study has the ability to increase the amount of HIV awareness, educational programs; expand resources and eventually decrease HIV rates. With data collected, researchers can assist society in narrowing down reasons why specific races are reporting an increased number of positive outcomes for the HIV virus. The results in this study overtime could ultimately reduce the risk of HIV infection within a specific race creating a safer society.
If the study is successful, researchers will have the ability to increase future funding, further develop detailed studies, and create a successful course of treatment for HIV positive individuals. Extended benefits for the researcher of a retrospective study such as case one include quicker, less expensive and often times easier than prospective studies.
The participants benefit from the anonymity removing judgment and bias to an already stigmatic disease. The increase of additional research could possibly draw more accessible treatment options and clinics to the Midwest region. Another benefit would be a feeling of fulfillment in helping researchers collect valuable data to build positive outcomes.
With research of all types there are often times risks. Case study one has many risks that could potentially affect the outcome of the study, hinder research, and create difficulty for participants and society. As a participant in this study the risks are moderate but include, breach in confidentially, testing errors, language barriers and manipulation.
According to The Belmont Report ( 1979, April 4):
Certain groups, such as racial minorities…may be continually sought out as research subjects, owing to their ready availability in settings where research is conducted. Given their dependent status and their compromised capacity for free consent, they should be protected against the danger of being involved in research solely for administrative convenience, or because they are easy to manipulate as a result of their illness or socioeconomic condition. (p.9)
Due to the pre-existing assumptions of HIV, people from ethnic minorities experience double discrimination. Thus creating a perceived judgment towards a group rather than individuals. Discrimination and racism directly affect health care in societies. (National Aids Trust, 2003)
As a researcher in this case the stakes are higher. The study may have a limited sample size due to the lack of information provided, fear and stigma of disease. Due to anonymity the researcher doesn’t have the ability to control exposure or facilitate follow up assessments, researchers also rely on another individual to input and collect accurate data. Another risk is the inaccuracy of racial categorization within this study, the race one identifies with or a person of multiple races could influence the data causing the study to be inaccurate. With these setbacks, researchers feel failure, falsify results, and have potential to lose their jobs and funding. Researchers run a bigger risk of fines or lawsuits.
Due to the retrospective nature of this study, society is at risk. Education and resources are not available at time of initial testing, releasing infected persons back into society to possibly engage in further risky behaviors spreading disease. The initial testing is not always accurate, results can take 3 months, and participants may need to be tested more than once to obtain a correct result. Therefore releasing HIV positive participants into the society without knowledge of test results.
This case presents minimal risk and falls into category 2 of the institutional review boards’ (IRB) exempt categories. Therefore this case study’s level of IRB is exempt. According to the John Carroll University Institutional Review Board’s (IRB) if “The information obtained is recorded by the investigator in such a manner that the identity of the human subjects cannot readily be ascertained, directly or through identifiers linked to the subjects;” the study qualifies as an exempt level status. The researchers in this study have no way to link their data to a specific participant due it being a retrospective study. The participant did not give a name or identifier when testing was administered. There are no actual patients in this study only previously collected data.
AIDS Information Education Action. (n.d). aids.org. Retrieved from www.aids.org
John Carroll Institutional Review Board. (2018, November). jcu.edu. Retrieved from https://jcu.edu/research/irb/investigators-guide/step-one-you-begin
National Aid Trust. (n.d). nat.org.uk. Retrieved from https://www.nat.org.uk/
The Belmont Report. (1979, April 4). hhs.gov. Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html
It is clear that the researchers in Case Study 1 are going to be missing some important data about race and HIV because in 2010 26% of newly infected HIV people were 13-24 years old and 50% of this group was not being tested for HIV(CDC, 2013). This untested percentage is the highest of any age group (CDC, 2013).
During 2010 through 2016 Van Handel, et al. (2016) found that “HIV disproportionately affects adolescents and young adults compared with the overall population” and that “50% of adolescents and young adults with HIV remain undiagnosed” because only 22% of high school students and 33% of young adults were being tested for HIV. During the timeframe of Case Study 1, male rates of HIV testing didn’t increase and there was actually a significant decrease in rates of HIV testing amongst young females, from 42%-39%. These statistics are concerning because HIV testing isn’t increasing amongst young males and young black females, who “account for the majority of new HIV infections among persons aged 13-24 years.”
References
Centers for Disease Control and Prevention. (2013). HIV testing trends in the United States, 2010-2011. Retrieved from https://www.cdc.gov/hiv/pdf/research/testing_trends.pdf
Van Handel, M. Kann, L., O’Malley Olsen, E., Dietz, P. (2016). HIV Testing among US high school students and young adults. Pediatrics, Volume 145, issue 2. Doi: https://doi.org/10.1542/peds.2015-2700
Thanks for your response, I found your data interesting and alarming. I would have preferred case study 1 to be more depth, longer time periods to collect data, getting incite to patients progression of disease but I do understand why researchers used retrospective data with a stigmatic disease such as this one. All efforts of a retrospective study are made to avoid sources of bias and loss of individual follow through (Statsdirect, 2019) I agree that we don’t know the age of the population that was tested in this case study, but I still feel valuable information can be obtained such as education awareness and why a particular race is having an increased occurrence contracting this disease.
Prospective, Retrospective, Case Control, Cohort Studies. (2019). www. statsdirect.com. Retrieved from https://statsdorect.com/help/basics/prospective
I agree with Mtrogers3 that investigators in the study will miss pertinent information as the measurement of elements required to make generalizations may be lacking. This statement is not absolute since the scenario provided no information on factors that determine if inferences can be drawn based on the number of persons that presented or tested during the period. According to Sauro, Jeff (2014), research is valid if it measures what is intended and reliable if the result remains consistent over time. My stance, however, is that given validity and reliability, the outcome will be beneficial in learning trends of the disease and possibly how to tackle it.
Reference
Sauro, J. (2014, November 4). Assessing the validity of your research. Retrieved February 8, 2020, from https://measuringu.com/validity-research/
Thanks for the response, I too agree there are limitations in this case study. I would like to see it become a prospective cohort study to include follow up with patients who test positive further developing treatment resources and support. During my research I came across an article that described the HIV crisis being “an interlocking relationship between biological, social, and behavioral factors” (J. Pellowski, S. Kalichman & N. Adler, 2013) which drive the HIV epidemic. It continued to describe social positions of those affected, particularly within race and gender. The conclusion was that “health disparities are exaggerated in people living with HIV those with the lowest socioeconomic status among whom, racial and ethic minorities are over represented”(J. Pellowski, S. Kalichman & N. Adler, 2013) I felt this case has similarities to case study one, taking it multiple steps further to obtain data and assist in helping society, participants and researchers.
J. Pellowski, S. Kalichman, & N. Adler Butler(2013). A pandemic of the poor: social disadvantage and the U.S. HIV epidemic. Journal for Nurse Practitioners. The American Psychologist 68 (4), 197-209 633-640. Retrieved from https://www/ncbi.nlm.nih.gov.