ABSTRACT
Given the expansion of genetics in medicine, there is a growing need to develop approaches to engage patients in understanding how genetics affects their health. Various qualitative methods have been applied to gain a deeper understanding of patient perspectives in topics related to genetics. Community dialogues (CD) are a bi-directional research method that invites community members to discuss a pertinent, challenging topic over the course of a multi-week period and the community members openly discuss their positions on the topic. Authors discuss the first application of the CD method to the topic of pharmacogenetics testing. Additional CD are needed to engage diverse participant populations on this topic to improve genetics literacy, enhance physician engagement and drive policy change.
Subject(s)
Health Literacy/ethics , Pharmacogenetics/ethics , Pharmacogenomic Testing/ethics , Precision Medicine/ethics , Bioethical Issues/standards , Focus Groups/standards , Health Literacy/standards , Humans , Pharmacogenetics/standards , Pharmacogenomic Testing/standards , Precision Medicine/standardsABSTRACT
This article reviews our experience and observations from conducting six Community Bioethics Dialogues (CBD) with elderly residents in diverse communities in Galveston, Texas, from 2014 through 2016. CBD is a mixed method that combines focus groups, instruction, ethnography, and community-based research. CBD brings together select community members for 3 hours once a week for 6 weeks to identify values. We employed CBD to investigate how participants think about and react to issues surrounding Patient-Centered Outcomes Research (PCOR), Comparative Effectiveness Research (CER), and mental health. We offer a methodological approach for conducting and optimizing meaningful dialogues with community groups.
Subject(s)
Bioethics , Community-Based Participatory Research/methods , Community-Based Participatory Research/organization & administration , Focus Groups , Program Development/methods , Aged , Aging , Comparative Effectiveness Research , Cooperative Behavior , Empowerment , Humans , Mental Health , Patient Outcome Assessment , TexasABSTRACT
In this essay, we argue that touch constitutes a sacred connection between the patient and practitioner. When touch is avoided or overlooked, the enigmatic inner workings of the body are ignored as those aspects of the body that can be quantified and ultimately controlled are emphasized. In utilizing touch as a fundamental way of opening up space for the sacred, the practitioner affirms the humanity for both the patient and herself. Only by returning to the senses can practitioners resist the dehumanizing effects of machinery and re-enchant the health-care profession in caring for persons they have sworn to serve.
