Case study one is about investigators who are analyzing different races who tested positive for human immunodeficiency virus (HIV). These investigators gathered data through government-funded clinics located in the Midwest region of the United States. Some of the variables that were available from the time of service at the initial testing include race, ethnicity, gender, age group, education, and socioeconomic status. This data was collected from January 2010 through December 2011.
Benefits: If the investigators use the different variables, they may be able to find a similarity or trend between positive HIV cases. If the investigators are able to find a trend, they may be able to help lower the occurrence of HIV. It could also lead to being able to offer more support groups and education if we know what demographics we need to be targeting. This will allow us to help people without singling out anyone due to the fact that the information was gathered anonymously, but we are able to reach groups at high risk of contracting or spreading HIV.
Risks: Many people do not get help or tested for HIV due to a stigma that is associated with HIV. If people do not get all the information about the information that was gathered was all anonymous, they may be more reluctant to get tested. We also risk targeting or stereotyping people who we chose to further educate based on the data collected. Some people may find it offensive if they realize that people meeting certain criteria are more likely to see education about HIV than others.
I find that the Institutional Review Board (IRB) would classify this as exempt level. The research being done involved human beings which first makes it be reviewed by IRB to ensure that the research was conducted inline with certain guidelines and passes certain criteria. This case does not pose a great risk so therefore it would fall into sub-category 2 if the IBR exempt. Since the data was collected anonymously there is no way to know who tested positive just by the information gathered.
References:
John Carroll University. (2018). STEP ONE: Before You Begin. Retrieved from https://jcu.edu/research/irb/investigators-guide/step-one-you-begin.
Paulson, A. (2017, March 9). Institutional Review Board (IRB). Retrieved from https://www.apus.edu/academic-community/research/institutional-review-board/index
Your list of benefits is good, and I agree. One example I found was a study of Florida HIV surveillance records from 2000-2014 showed there were significant differences in retention of care and viral load between different races. It recommends that interventions be culturally tailored to bridge the racial gaps in HIV outcomes (Sheehan, et. al., 2017). That goes along with the benefit you listed of being able to reach out to high risk groups and providing culturally sensitive education.
You bring about a good point regarding the risks of targeting HIV education to certain groups. One study showed that providing education about effective treatments for HIV helped to reduce the perceived stigma (Gwadz, et. al., 2018). The areas or races that are identified to be at great risk for contracting HIV are the ones in the most need of those educational programs.
Based on the information you presented I believe you are supportive of this study, but it is not clear. Based on your research, are you in support of a study such as this? You provided good information and I look forward to your response.
References
Gwadz, M., Leonard, N. R., Honig, S., Freeman, R., Kutnick, A., & Ritchie, A. S. (2018). Doing battle with “the monster:” how high-risk heterosexuals experience and successfully manage HIV stigma as a barrier to HIV testing. International journal for equity in health, 17(1), 46. doi:10.1186/s12939-018-0761-9
Sheehan, D. M., Fennie, K. P., Mauck, D. E., Maddox, L. M., Lieb, S., & Trepka, M. J. (2017). Retention in HIV Care and Viral Suppression: Individual- and Neighborhood-Level Predictors of Racial/Ethnic Differences, Florida, 2015. AIDS patient care and STDs, 31(4), 167–175. doi:10.1089/apc.2016.0197
I think you have a great point when you discuss people not getting tested or HIV positive people not getting help because of the stigma on HIV. “An estimated 1.1 million people in the United States had HIV at the end of 2016. Of those people, about 14%, or 1 in 7, did not know they had HIV” (Center for Disease Control, 2019). It is crazy to think that people would rather not know their diagnosis then to deal with the stigma and discrimination held with HIV. “Whenever AIDS has won, stigma, shame, distrust, discrimination and apathy was on its side. Every time AIDS has been defeated, it has been because of trust, openness, dialogue between individuals and communities, family support, human solidarity, and the human perseverance to find new paths and solutions” (Advert, 2019).
References
Basic Statistics. (2019, November 22). Retrieved from https://www.cdc.gov/hiv/basics/statistics.html
HIV Stigma and Discrimination. (2019, October 10). Retrieved February 6, 2020, from https://www.avert.org/professionals/hiv-social-issues/stigma-discrimination
It is convenient for the researchers to use data that was already collected from government-funded clinics, but is this data a true representation of the demographics in the Midwest? I see a potential problem with the fact that the data being used is from people who have sought HIV testing. Like you mentioned, many people will avoid getting tested for HIV because of the stigma associated with it. In 2011 a study by the Institute of Medicine stated that “HIV in racial and ethnic minority communities, particularly the black community, is complicated by a range of issues, including, among others, a lower likelihood of getting tested, greater discomfort with the health care system and with medical institutions, lower levels of acceptance of same-sex and bisexual sexual behavior, and racism (Institute of Medicine, 2011).
The CDC (2012) states that there is a “disproportionate burden of HIV among young MSM [MSM stands for males having sex with males],” which stems from many factors including not seeking out HIV prevention services because of stigma and homophobia that can be associated with these services as well as “concerns about confidentiality” and “many young MSM may underestimate their personal risk for HIV”.
During the time period of Case Study 1 data collection, “the majority of HIV infections occur among gay, bisexual, and other men who have sex with men and among black females.” (Van Handel, et al. 2016). Black men who have sex with men have the highest rates of HIV (51%) amongst young gay and bisexual men, and have the highest disproportionate burden of HIV when looking at their population numbers compared to all other races (CDC, 2019). Because of the stigma associated with HIV and also homosexuality, many men who have sex with men “have been reluctant to undergo HIV testing, to seek treatment for HIV, and to participate in scientific research.” (Institute of Medicine, 2011)
References
CDC (2019). HIV and youth. Retrieved from https://www.cdc.gov/hiv/group/age/youth/index.html
Institute of Medicine. (2011). The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington, DC: The National Academies Press. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK64801/
I agree that the level of IRB review required for this Case Study would be the Exempt Level. The criteria would be that research is minimal risk and the participant is anonymous. I totally agree that the biggest risk for the participant would be the stigma that is associated with HIV. I think more people would get tested and treated if there wasn’t such a big stigma with HIV/AIDS. One study found that participants who reported high levels of stigma were over four times more likely and unwilling to take an HIV test due to the fear of being judged and discriminated against (HIV Stigma and Discrimination, 2019). The unwillingness to take an HIV test means that more people are diagnosed late, when the virus may have already progressed to AIDS. This makes treatment less effective, increasing the likelihood of transmitting HIV to others, and causing death.
HIV Stigma and Discrimination. (2019, October 10). Retrieved February 8, 2020, from https://www.avert.org/professionals/hiv-social-issues/stigma-discrimination
Online Ethics Center for Engineering. (2006, June). Chapter 4: assessing risks and potential benefits and evaluating vulnerability (research involving human participants v1). Retrieved January 23, 2020, from https://www.onlineethics.org/cms/8033.aspx#risks
Stigma and discrimination are among the greatest challenges that people living with human immunodeficiency virus (HIV) face, and both are known to negatively affect quality of life as well as treatment outcomes.(International journal of environmental research and public health,16 pp11).When you take into consideration all the stigma and judgment on different individuals that’s done daily, it makes it more realistic, therefore more understandable of the rationale of risk and benefits associated with this case study.
Tran, B. X., Phan, H. T., Latkin, C. A., Nguyen, H., Hoang, C. L., Ho, C., & Ho, R. (2019). Understanding Global HIV Stigma and Discrimination: Are Contextual Factors Sufficiently Studied? (GAPRESEARCH). International journal of environmental research and public health, 16(11), 1899. doi:10.3390/ijerph16111899