Cases in Bioethics: Health Research Ethics in Southeast Asia
Keywords

remote research, virtual research, social media, stigma, privacy, confidentiality, consent, deception, views and attitude on HPV, online survey, health care providers

Physical distancing requirements to manage the COVID-19 pandemic precipitated rapid shifts towards decentralized and virtual modalities for many types of research. Various online and remote research methods relatively new to some parts of the world became more commonplace, such as conducting surveys through social media platforms like WhatsApp or conducting focus group discussions or interviews virtually.1

Aside from conforming to pandemic restrictions, perceived advantages of conducting online research include lower human and financial resource requirements, compared to face-to-face research. In addition, the internet offers the opportunity for efficient access to real-time data and research participants across the globe.2,3 From the participant perspective, virtual modalities can also be more convenient, minimizing travel and associated burdens. For online surveys, the opportunity to complete surveys at one’s convenience also provides advantages. For some types of research, remote data collection can also help to minimize social desirability biases through respondent anonymity.

Human papillomavirus (HPV) infection is one of the most common viral genital infections. It is transmitted through sexual contact4,5 and is linked to development of cervical cancer.6 Individuals with HPV are stigmatized due to its reputation as a sexually transmitted disease. Stigma creates barriers to health-seeking behaviors and may also diminish care delivery for infected individuals.7 A better understanding of stigma may guide interventions to reduce it.

During the COVID-19 pandemic, a research team was interested in studying health care providers’ attitudes toward individuals with human papillomavirus (HPV), with a particular interest in stigma generated from within the health care encounter. They decide to conduct an online survey of providers to capture their views and attitudes regarding HPV. While the researchers are experienced in their field, they are new to using online platforms to conduct research. After consulting colleagues about safeguards for online data privacy and other potential concerns, the researchers decide to recruit participants via WhatsApp. The details of the potential participants and their contact numbers were obtained from the registration databases of a few professional societies and networks.

Questions

  1. Was it appropriate to retrieve personal contact information of prospective participants from the professional databases without their prior consent? Why or why not? Might there be a better approach?

  2. When obtaining consent, should the researchers be required to disclose to respondents that they are studying provider-generated stigma against people with HPV? Why or why not?

  3. What ethics, regulatory, and data-related considerations should be taken into account by the researchers in using WhatsApp to collect survey responses?

  4. What are some other ethical issues associated with the study that the researchers should anticipate, and how might they plan to mitigate them?

References

Centers for Disease Control and Prevention. “Sexually Transmitted Infections: About Genital HPV Infection.” Centers for Disease Control and Prevention. January 19, 2021. https://www.cdc.gov/sti/about/about-genital-hpv-infection.html?CDC_AAref_Val=https://www.cdc.gov/std/hpv/stdfact-hpv.htm.
Dodds, Sarah, and Alexandra Claudia Hess. “Adapting Research Methodology during COVID-19: Lessons for Transformative Service Research.” Journal of Service Management 32, no. 2 (July 17, 2020): 203–17. https://doi.org/10.1108/josm-05-2020-0153.
Fulton, Alex. “Ending the Stigma around Cancers Caused by HPV.” HealthyWomen. December 2, 2020. https://www.healthywomen.org/your-health/your-body/ending-stigma-around-cancers.
Latkovikj, Marija Topuzovska, and Mirjana Borota Popovska. “Online Research about Online Research: Advantages and Disadvantages.” E-Methodology 6, no. 6 (May 28, 2020): 44–56. https://doi.org/10.15503/emet2019.44.56.
Nyblade, Laura, Melissa A. Stockton, Kayla Giger, Virginia Bond, Maria L. Ekstrand, Roger Mc Lean, Ellen M. H. Mitchell, et al.Stigma in Health Facilities: Why It Matters and How We Can Change It.” BMC Medicine 17, no. 1 (February 15, 2019): 1–15. https://doi.org/10.1186/s12916-019-1256-2.
Sarah Mae Sincero. “Online Surveys.” Explorable. 2019. https://explorable.com/online-surveys.
World Health Organization. “Cervical Cancer.” World Health Organization. November 17, 2023. https://www.who.int/news-room/fact-sheets/detail/cervical-cancer#:~:text=HPV%20is%20the%20most%20common.

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