Dee McKnight, PhD
Date: May 6, 2022
Question: What is the most important information, conceptually, for clinical genetics professionals to do their jobs well? Is the information always necessary; if not, when is it critical vs. extraneous? When is it potentially harmful?
Goal: Distill the most relevant information among population descriptors that serves a purpose in the clinical curation pipeline, or other clinical genetics work
This version of the Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 9 items. Participant responses are recorded on a four-point Likert scale.
Mainous and colleagues report the development and validation of the 12-item Trust in Medical Resesearchers Scale. This scale is designed to be self-administered. Several scale items assess concerns about research participation that may be unique to populations with documented mistrust in medicine. It could be used to assess barriers to participation in research and inform recruitment strategies. Item descriptions are available in Table 1 of the linked publication.
This survey asks participants to supply demographic information (including educational level, household income, and race), rate their familiarity with precision medicine terms, indicate their attitudes to precision medicine, identify sources of medical information and potential barriers to participation in research, and complete a measure of trust in research and researchers. The survey is available in Table 1 and in the supporting information of the linked publication.
The “Qualitative Story Deck,” (QSD) is an interactive elicitation technique desgined to explore the willingness of African Americans (and others) to participate in health research involving biospecimens. Participants choose cards and create a research scenario which can vary on the basis of four details: 1. race/ethnicity of the researcher, 2. research goal, 3. biospecimen requested, and 4. institutional affiliation. The researcher can then ask participants to decide whether they would participate in the research project and how they came to the decision.
Project Narrative This proposal seeks to investigate the ethical, social, and policy implications of a new kind of genetic information currently available to the public: polygenic scores for educational attainment (EA-PGS).
Project Narrative ?Ethical and Social Implications of In Vitro Gametogenesis? In vitro gametogenesis (IVG) is an emerging technology that involves making an egg or a sperm cell outside of the body from a skin cell or a progenitor germ cell, an approach recently validated in mouse models.
Project Narrative Studies suggest that distrust is a major barrier for participation of minorities in Precision Medicine Research (PMR), though no study has examined the sources of (dis)trust and factors affecting views on trustworthiness of PMR among people with disabilities. This study proposes to engage with people with mobility, visual and hearing disabilities?the most common conditions in the U.S.?across racial/ethnic communities and with translational genomic researchers, the leaders in PMR, to close this gap.