DO-IT-YOURSELF (DIY) AND DIRECT-TO-CONSUMER (DTC) MEDICINE & SCIENCE
In do-it-yourself medicine and science, lay individuals replicate or mimic experimental techniques outside of medical and academic settings. Our research investigates the sociology of these movements, their concomitant risks and benefits, and the ethical and legal questions they raise. Previously, Dr. Wexler has studied the DIY brain stimulation movement; ongoing projects investigate DIY fecal microbiota transplants (FMT) and DIY dentistry.
- Rasmussen, L. M. et al. Realizing Present and Future Promise of DIY Biology and Medicine through a Trust Architecture. Hastings Center Report 50, 10–14 (2020).
- Largent, E. A., Wexler, A. & Karlawish, J. The Future Is P-Tau—Anticipating Direct-to-Consumer Alzheimer Disease Blood Tests. JAMA Neurology 78, (2021).
- Kalokairinou, L., Zettler, P. J., Nagappan, A., Kyweluk, M. A. & Wexler, A. (2020). The promise of direct-to-consumer COVID-19 testing: ethical and regulatory issues. Journal of Law and the Biosciences.
- Wexler, A. (2020). “Do-It-Yourself and Direct-to-Consumer Neurostimulation.” in I. Bárd. & E. Hildt (Eds.) Ethical Dimensions of Commercial and DIY Neurotechnologies (pp. 127-156), Elsevier.
- Wexler, A., Nagappan, A., Beswerchij, A., Choi, R. (2020). Direct-to-consumer orthodontics: surveying the user experience. The Journal of the American Dental Association 151 (8), 625-636.
- Ekekezie, Chiazotam; Perler, Bryce K.; Wexler, Anna; Duff, Catherine; Lillis, Christian John; Kelly, Colleen R. (2020). Understanding the Scope of Do-It-Yourself Fecal Microbiota Transplant. American Journal of Gastroenterology, 115(4):603-607.
- Wexler, A. (2017). The Social Context of “Do-It-Yourself” Brain Stimulation: Neurohackers, Biohackers, and Lifehackers. Frontiers in Human Neuroscience.
- Wexler, A, & Reiner, P. (2017). "Home Use of tDCS: From Do-it-Yourself to Direct-to-Consumer,” in L. S. M. Johnson & K. S. Rommelfanger (Eds.), Routledge Handbook of Neuroethics (pp. 271–284). [link to chapter pdf]
- Wexler, A. (2016). The practices of do-it-yourself brain stimulation: implications for ethical considerations and regulatory proposals. Journal of Medical Ethics 42(4):211:215. [preprint link]
There is an increasing number of products--such as neurostimulation devices, consumer brainwave recording devices, brain training games, and apps marketed for wellness--that are marketed directly to consumers to modify or improve their brain function. Who uses these technologies and for what purposes? What are the benefits and risks of these neurotechnologies? How are these technologies currently regulated, and how should they be regulated?
- Coates Mcall, I & Wexler, A. (2020). “Peering into the Mind? The Ethics of Consumer Neuromonitoring Devices,” in I. Bárd. & E. Hildt (Eds.) Ethical Dimensions of Commercial and DIY Neurotechnologies (pp. 1-22), Elsevier.
- Wexler, A. (2019). Direct-to-consumer Neurotechnology: A Grounded Appraisal. American Journal of Bioethics - Neuroscience 10 (4):172-174. [open access link]
- Wexler, A. (2019). Separating Neuroethics from Neuro-hype. Nature Biotechnology 37 (9):998-990. [open access link]
- Wexler, A, & Reiner, P.B. (2019). Oversight of Direct-to-Consumer Neurotechnologies. Science 363 (6462):234-234. [open access link]
- Kuersten, A. & Wexler, A. (2019). Brain Modulation and Patent Law. Nature Biotechnology 37, 18-19. [preprint link]
- Green, C.S., Bavelier, D., Kramer, A.F., …. Wexler, A., Witt, C. (2019). Improving Methodological Standards in Behavioral Interventions for Cognitive Enhancement. Journal of Cognitive Enhancement 3(1)2-29.
- Wexler, A, & Thibault, R. (2019) Mind-reading or misleading? Assessing direct-to-consumer electroencephalography (EEG) devices marketed for wellness and their ethical and regulatory implications Journal of Cognitive Enhancement 3(1):131-137. [pdf from ResearchGate; coded data available here]
- Wexler, A. (2018). Who Uses Direct-to-Consumer Brain Stimulation Products, and Why? A Study of Home Users of tDCS Devices. Journal of Cognitive Enhancement 2(1)114-134. [pdf from ResearchGate]
- Wexler, A. (2015). A pragmatic analysis of the regulation of consumer transcranial direct current stimulation devices in the United States. Journal of Law and the Biosciences 2(3):669-696. [open access pdf]
CITIZEN SCIENCE & CROWDSOURCED HEALTH
One of the benefits of the democratization of science and medicine is the capability of "crowdsourcing" large amounts of data from users--and the potential for using that data to create generalizable knowledge. While citizen science holds a tremendous amount of promise, we must also be cognizant both of its practical feasibility and limitations, as well as how this new research paradigm challenges existing protections for human subjects research.
- Guerrini C., Wexler A., Zettler, P., McGuire, A. Biomedical Citizen Science or Something Else? Reflections on Terms and Definitions. American Journal of Bioethics, 19(8):17-19.
- Wexler, A, and Hamilton, Roy H. (2017). Crowdsourced tDCS Research: Feasible or Fanciful? American Journal of Bioethics-Neuroscience 8(1):50-53. [link is open access]
Although much of the above-mentioned research falls under the umbrella of neuroethics, we also work more broadly on neuroethical issues, particularly in the areas of cognitive enhancement and brain stimulation. We have an NIH-supported neuroethics project that examines the phenomenological experience of undergoing awake deep brain stimulation (DBS) and patients' motivations for participating in an intraoperative neuroscience experiment.
- Wexler, A. (2020). The Urgent Need to Integrate Neuroscience and Neuroethics. American Journal of Bioethics-Neuroscience, 11(3)219-220..
- Solinsky, R, Specker-Sullivan, L, Wexler A. (2019). Current barriers and ethical considerations for clinical implementation of epidural stimulation for functional improvement after spinal cord injury. The Journal of Spinal Cord Medicine, published online first. [pre-print pdf]
- Hendriks S, Grady C, Ramos KM, Chiong W, Fins JJ, Ford P, Goering S, Greely HT, Hutchison K, Kelly ML, Kim SYH, Klein E, Lisanby SH, Mayberg H, Maslen H, Miller FG, Rommelfanger K, Sheth SA, Wexler A. (2019). Ethical Challenges of Risk, Informed Consent, and Posttrial Responsibilities in Human Research With Neural Devices: A Review. JAMA Neurology, 76(12):1506-1514.
- Rafael Yuste, Sara Goering... Anna Wexler, Meredith Whittaker, Jonathan Wolpaw (2017) . Four ethical priorities for neurotechnologies and AI. Nature, 551(7679): 159-163.
- A. Antal, .... A. Wexler, U. Ziemann, M. Hallett, and W. Paulus. (2017). Low intensity transcranial electric stimulation: Safety, ethical, legal regulatory and application guidelines. Clinical Neurophysiology, 128(9): 1774-1809. [full text link]
Many neurotherapies being marketed to the general public, both for clinical indicaitons and for cognitive enhancement, are not accepted by mainstream medicine. Our ongoing ethical, empirical and sociological work in this area aims to shed light on the alternative neurotherapy landscape.
- Wexler, A., Nagappan, A., Kopyto, D., Choi, R. (2020). Neuroenhancement for Sale: Assessing the Website Claims of Neurofeedback Providers in the USA. Journal of Cognitive Enhancement (published online first). [Read-only link].
DIGITAL HEALTH INFORMATION & ONLINE FORUMS
How are digital health information, apps, and online forums transforming medicine, and how they are impacting the doctor-patient relationship? We are particularly interested in these questions in the context of pregnancy--as Dr. Wexler wrote about in a July 2018 op-ed in the Washington Post--and have launched several research projects in this domain.
- Wexler, A., Davoudi, A., Weissenbacher, D., Choi, R., O’Connor, K., Cummings, H., Gonzalez-Hernandez, G. (2020). Pregnancy and health in the age of the Internet: A content analysis of online “birth club” forums PLOS ONE 15(4), e0230947.
- Reisman, J., Wexler, A. Covid‐19: Exposing the Lack of Evidence‐Based Practice in Medicine. The Hastings Center Report, 50 (3), 77-78.
- Wexler, A. (2019). Innovative Practice Outside of Medical Institutions. American Journal of Bioethics 19(6)41-42. [preprint link]
HISTORY OF ELECTRICAL THERAPY
The use of electricity for medicinal purposes dates back hundreds of years. In a paper published in Brain Stimulation, Dr. Wexler demonstrated that many of the features characterizing the contemporary home use of tDCS—a do-it-yourself movement, anti-medical establishment themes, and conflicts between lay and professional usage—are a repetition of themes that arose a century ago with regard to electrical medicine. In a longer paper published in the Journal of the History of Medicine and Allied Sciences, Dr. Wexler explored the history of a portable shock-producing electrotherapeutic device known as the “medical battery,” which was thought to cure a wide variety of ailments in the late nineteenth and early twentieth century.
- Wexler, A. (2017). Recurrent Themes in the History of the Home Use of Electrical Stimulation: Transcranial Direct Current Stimulation (tDCS) and the Medical Battery (1870-1920). Brain Stimulation 10(2):187-195.
- Wexler, A. (2017). The Medical Battery in the United States 1870-1920: Electrotherapy at Home and in the Clinic. Journal of the History of Medicine and Allied Sciences 72(2)166-192. [link is open access]
- Awarded the 2018 Stanley Jackson Prize for best article to appear in the Journal of the History of Medicine and Allied Sciences in the preceding three years.