To Counsel or Not to Counsel: Physician Attitudes and Experiences with Do-It-Yourself (DIY) Fecal Microbiota Transplant (FMT).

BACKGROUND: In the early 2010s, a phenomenon known as do-it-yourself (DIY) fecal microbiota transplant (FMT) emerged as lay individuals began self-administering FMTs at home. Although prior research indicates that many individuals who perform DIY FMT have sought advice from healthcare providers, to date there has been no investigation of physicians' experiences with DIY FMT. The objective of this qualitative study was to examine the attitudes of physicians who offer FMT regarding the practice of DIY FMT and to assess how they navigated the ethical challenges of patient requests for DIY FMT. METHODS: We recruited physicians listed on two patient-created online databases of FMT providers. All physicians who indicated having been approached for advice about DIY FMT were included in the study. Semi-structured interviews with physicians explored their attitudes toward and experiences with DIY FMT. RESULTS: Of 18 physicians interviewed, one reported having provided counsel in response to an initial patient inquiry about DIY FMT, 2 indicated they explicitly advised against DIY FMT and refused to provide advice, and 15 fell in a middle category of discouraging DIY FMT and discussing reasons why. Among the physicians in this third category, four reported that they had changed their approach to providing counsel in response to a patient telling them they were going to perform DIY FMT anyway. CONCLUSIONS: Physicians in our study employed a wide range of strategies for promoting safety in the DIY FMT context, from explicitly advising against the procedure to the provision of guidance aimed at mitigating potential harms. While there has been increasing attention to the practices of DIY medicine, this study underscores the need for greater attention to the ethically complex situations that physicians face when patients request guidance for unapproved at-home treatments.

Sex reconfigured: DIY hormone therapy and vernacular endocrinology in transfeminine communities in China.

Faced with a restrictive institutional medical landscape, trans people in China turn to DIY (Do-It-Yourself) hormone therapy. While existing health literature has studied the risks and impacts of informal hormone therapy, little is known about the practical strategies and the embedded meaning-making processes around hormone-taking on the ground. Building on digital and in-person participant observation conducted in two cities in China and semi-structured interviews with eight transfeminine individuals between 2021 and 2022, this article examines the embodied practices and community knowledge of tinkering with hormones. Specifically, I examine the ways that conventional biomedical notions of efficacy and risk are both enrolled and contested to understand bodily becoming in the community space. Closely engaging with biomedical structures, ideas, and knowledge, trans people challenge and reformulate dominant notions of efficacy, risk, and toxicity. A form of DIY hormone literacy is taking shape in the community, informed by the hands-on engagement with medicine, an affinity with pharmaceuticals, and people's temporal narratives of transition. Throughout these processes, DIY practitioners multiply the materials and imaginations of medicine. They reshape the narrowly-defined biomedical model of sex and enable an alternative onto-epistemology of hormonal sex-gender that is amenable to modification and constantly in flux. Drawing from medical anthropology, science and technology studies (STS), and feminist, queer, and trans studies, this article contributes to the conversation on the politics and poetics of sex-gender and embodied knowledge production in the community space.

Mapping the Landscape of Do-it-Yourself Medicine.

The practice of medicine is typically conceptualized as remaining within the boundaries of a hospital or clinic. However, in recent years, patients have been able to gain access to information about medical research as it is ongoing. As a result, there has been a rise in do-it-yourself (DIY) medicine, where individuals treat themselves for medical conditions outside of clinical settings, often mimicking experimental therapies that remain inaccessible to the wider public. For example, in DIY brain stimulation, individuals suffering from depression build at-home electrical headsets using nine-volt batteries, mimicking an experimental neuroscience technique used in scientific laboratories. In DIY fecal transplantation, those with intestinal disorders like C. Difficile and inflammatory bowel disease transplant stool from donors into themselves with the aid of blenders and enemas. In the open Artificial Pancreas System movement, diabetes patients hacked together an artificial pancreas system from their glucose monitors and insulin pumps, years before such a system was approved by the United States Food and Drug Administration (US FDA). To date, scholarship on DIY medicine has largely been relegated to specific medical domains (e.g., neurology, gastroenterology, infectious disease). In this paper, however, I recognize DIY medicine as a cross-cutting phenomenon that has emerged independently across medical domains but shares common features. I map the varieties of DIY medicine across these domains and suggest that four key factors lead to their creation, growth, and uptake. In doing so, this essay sheds light on an understudied area of biomedical citizen science that is likely to grow substantially in the coming decades.

Realizing Present and Future Promise of DIY Biology and Medicine through a Trust Architecture.

The speed and scale of the COVID-19 pandemic has highlighted the limits of current health systems and the potential promise of non-establishment research such as "DIY" research. We consider one example of how DIY research is responding to the pandemic, discuss the challenges faced by DIY research more generally, and suggest that a "trust architecture" should be developed now to contribute to successful future DIY efforts.