Sociologists have documented how the pharmaceutical industry has corrupted pharmacovigilance (PV), defined as the practices devoted to detecting and preventing adverse drug reactions (ADRs). In this article, I juxtapose the official postmarketing system of PV with firsthand accounts of ADRs as found in 60 YouTube vlogs created by 29 individuals who recount debilitating reactions to fluoroquinolones, a common class of antibiotics. Whereas official PV is said to contribute the banalization of risk, these vlogs exemplify the dramatization of risk. I consider the vlogs as instances of lay PV. They represent lay knowledge claims created in response to perceived failures in the official system of regulation. As such, lay PV shares commonalties with other articulations of lay expertise as a counter to medical authority. At the same time, this case also underscores how the YouTube platform offers new tools for the creation and distribution of lay expertise.
BarkerKristin. 2005. The Fibromyalgia Story. Philadelphia: Temple University Press.
6.
BarkerKristin. 2008. “Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness.” Journal of Health and Social Behavior49(1):20–36.
7.
BeckUrlich. 1992. The Risk Society: Towards a New Modernity. Newbury Park, CA: Sage.
8.
BrownPhil. 1992. “Popular Epidemiology and Toxic Waste Contamination: Lay and Professional Ways of Knowing.” Journal of Health and Social Behavior33(3):267–81.
CharmazKathy. 1999. “Stories of Suffering: Subjective Tales and Research Narratives.” Qualitative Health Research9(3):362–82.
12.
ChouWen-Ying SylviaHuntYvonneFolkersAnnaAugustonErik. 2011. “Cancer Survivorship in the Age of YouTube and Social Media: A Narrative Analysis.” Journal of Medical Internet Research13(1):e7. doi:10.2196/jmir.1569.
13.
ClarkeAdeleMamoLauraFosketJennifer RuthFishmanJenniferShimJanet. 2010. Biomedicalization: Technoscience, Health, and Illness in the U.S. Durham, NC: Duke University Press.
14.
CohenJay. 2001. “Peripheral Neuropathy Associated with Fluoroquinolone.” The Annals of Pharmacotherapy35:1–7.
15.
CollinsHarryEvansRobert. 2007. Rethinking Expertise. Chicago: University of Chicago Press.
16.
ConradPeter. 1985. “The Meaning of Medications: Another Look at Compliance.” Social Science & Medicine20(1):29–37.
17.
ConradPeterBandiniJuliaVasquezAlexandria. 2016. “Illness and the Internet: From Private to Public Experience.” Health20(1):22–32.
18.
ConradPeterBarkerKristin. 2010. “The Social Construction of Illness: Key Insights and Policy Implications.” Journal of Health and Social Behavior51(S):67–79.
19.
CorriganOonagh. 2002. “A Risky Business: The Detection of Adverse Drug Reactions in Clinical Trials and Post-marketing Exercises.” Social Science & Medicine55(3):497–507.
20.
EpsteinSteven. 1995. “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials.” Science, Technology & Human Values20(4):408–37.
21.
FisherJill. 2015. “Feeding and Bleeding: The Institutional Banalization of Risk to Healthy Volunteers in Phase I Pharmaceutical Clinical Trials.” Science, Technology & Human Values40(2):199–226.
22.
FontanarosaPhil B.RennieDrummondDeAngelisCatherine. 2004. “Postmarketing Surveillance: Lack of Vigilance, Lack of Trust.” JAMA292(21):2647–50.
FriedStephen. 1999. Bitter Pills: Inside the Hazardous World of Legal Drugs. London: Bantam.
28.
FucileBiancaBridgeEricaDulibanCharleneLawMadelyn. 2017. “Experience-Based Co-design: A Method for Patient and Family Engagement in System-Level Quality Improvement.” Patient Experience Journal4(2):53–60.
29.
FullenkampNatalie Kay. 2019. “YouTube Vlogs as Illness Narratives: Methodological Consideration.” Pp. in The Oxford Handbook of the Sociology of the Body and Embodiment, edited by BoeroN.MasonK. Oxford: Oxford University Press.
30.
GardnerJohnWarrenNarelleAddisonCoutneySamuelGabby. 2019 “Persuasive Bodies: Testimonies of Deep Brain Stimulation and Parkinson’s on YouTube.” Social Science & Medicine222:44–51.
31.
GibsonMargaret. 2016. “YouTube and Bereavement Vlogging: Emotional Exchange Between Strangers.” Journal of Sociology52(4):631–45.
32.
GiddensAnthony. 1990. Consequences of Modernity. Cambridge, MA: Polity Press.
33.
GoffmanErving. 1959. The Presentation of Self in Everyday Life. Garden City, NY: Anchor.
34.
HarrisAnnaWyattSallyKellySusan. 2014. “The Gift of Spit (and the Obligation to Return It): How Consumers of Online Genetic Testing Services Participate in Research.” Information Communication & Society16(2):236–57.
LakoffAndrew. 2007. “The Right Patients for the Drug: Managing the Placebo Effect in Antidepressant Trials.” BioSocieties2(1):57–71.
39.
LegewieNicolasNassauerAnne. 2018. “YouTube, Google, Facebook: 21st Century Online Video Research and Research Ethics.” Qualitative Social Research19(3). doi:10.17169/fqs-19.3.3130
40.
LightDonald. 1993. “The Changing Character of the Medical Profession in the United States.” Pp. 69–79 in The Changing Medical Profession: An International Perspective, edited by HaffertyF.McKinlayJ. New York: Oxford University Press.
41.
LightDonaldLexchinJoelDarrowJonathan. 2013. “Institutional Corruption of Pharmaceuticals and the Myth of Safe and Effective Drugs.” The Journal of Law, Medicine & Ethics41(3):590–600.
42.
LiuLeslieHuhJinaNeogiTinaInkpenKoriPratt.Wanda2013. “Health Vlogger–Viewer Interaction in Chronic Illness Management.” Proceedings of the SIGCHI Conference on Human Factors in Computing Systems2013:49–58. doi:10.1145/2470654.2470663
MurphyShirleyRobertsRosemary. 2006. “‘Black Box’ 101: How the Food and Drug Administration Evaluates, Communicates, and Manages Drug Benefit/Risk.” Journal of Allergy and Clinical Immunology117(1):34–39.
47.
PopayJennieRogersAnneWilliamsGareth. 1998. “Rationale and Standards for the Systematic Review of Qualitative Literature in Health Services Research.” Qualitative Health Research8(3):341–51.
48.
PriorLindsay. 2003. “Belief, Knowledge and Expertise: The Emergence of the Lay Expert in Medical Sociology.” Sociology of Health & Illness25(3):41–57.
49.
RaunTobias. 2016. Out Online: Trans Self-Representation and Community Building on YouTube. New York: Routledge.
50.
RiessmanCatherine Kohler. 2008. Narrative Methods in the Human Sciences. Thousand Oaks, CA: Sage.
51.
RitchieJaneLewisJane. 2003. Qualitative Research Practice: A Guide for Social Science Students and Researchers. Thousand Oaks, CA: Sage.
52.
SmithKarenGolderSuSarkerAbeedLokeYoonO’ConnorKarenGonzalez- HernandezGraciela. 2018. “Methods to Compare Adverse Events in Twitter to FAERS, Drug Information Databases, and Systematic Reviews: Proof of Concept with Adalimumab.” Drug Safety41(12):1397–410.
SultanaJanetCutroneoPaolaTrifiròGianluca. 2013. “Clinical and Economic Burden of Adverse Drug Reactions.” Journal of Pharmacological Pharmacotherapy, 4(Suppl 1):S73–77.
TennysonLauren E.AverchTimothy D. 2017. “An Update on Fluoroquinolones: The Emergence of a Multisystem Toxicity Syndrome.” Urology Practice4(5):383–87.
57.
TimmermansStefanTavoryIddo. 2012. “Theory Construction in Qualitative Research: From Grounded Theory to Abductive Analysis.” Sociological Theory30(3):167–86.
ZavestoskiStephenMorello-FroschRachelBrownPhilMayerBrianMcCormickSabrinaGasiorRebecca. 2005. “Health Social Movements and Contested Illnesses.” Pp. 253–78 in Research in Social Movements, Conflict and Change. Vol. 25, edited by MeyersD.CressD. San Diego: Elsevier/JAI Press.
