Epigenetics has become an area of growing interest for scientists, physicians, policymakers, and the public. Referring to molecular processes that alter gene expression without changing DNA sequence, epigenetics suggests that factors including diet, toxins, stress, trauma, and parental care may have lasting impacts on intergenerational health. These claims have brought renewed attention to the implications of epigenetics for understandings of health, disease, and individual responsibility. This K99/R00 Award is a five-year training and research project that will use qualitative and bioethical methods to address the social and ethical implications of epigenetics related to child health.
The specific aims are: 1) to describe, based on in-depth interviews, how scientific investigators conceptualize epigenetic mechanisms and the implications these views have for understandings of genetic risks and responsibilities related to children's psychiatric, behavioral, and neurodevelopmental health; 2) to conduct 3 ethnographic case studies of community-based intervention programs where epigenetic findings are used to improve children's psychiatric, behavioral, and neurodevelopmental health; and 3) to perform normative analyses, based on findings from Aims 1 and 2, to identify the social and ethical implications of epigenetics in research and community settings. To date, no study has systematically investigated the conceptualizations and processes involved in the production, translation, and application of epigenetic findings related to child health. This study will be the first to collect and analyze empirical evidence to understand the perspectives of differently positioned stakeholders on this important public health issue. This evidence will be used to inform recommendations for the ethical conduct and translation of epigenetics across research, clinical, and community settings. The candidate will receive mentored training in genetics and epigenetics, bioethics, and quantitative methods to facilitate the research and career development goals of this project. The candidate's career goals are: 1) to develop a high-quality, independently funded research program exploring the influence of the genome sciences ? including epigenetics ? on contemporary conceptualizations of health, disease, and responsibility; 2) to generate empirical research that aids in better understanding the ethical and social implications of epigenetics; and 3) to inform future research and policy related to the implementation of epigenetic and genomic findings related to child health in research, clinical, and community settings. During the K99 phase of this project, the candidate's training will include coursework, directed readings, and the guidance of an accomplished, multidisciplinary mentor team with extensive experience supporting young investigators. This Award will allow the candidate to transition into an independent ELSI researcher with expertise in the empirical study of the implications of genomics and epigenetics for how we conceptualize and understand health, disease, and individual responsibility?an ELSI research priority in the area of Broader Societal Issues.
This Pathway to Independence Award (K99/R00) will prepare the candidate to become an interdisciplinary ELSI researcher with a high-quality, independently funded research program exploring the influence of the genome sciences ? including epigenetics ? on conceptualizations and understandings of health, disease, and individual responsibility. This study examines conceptualizations of epigenetics related to children's psychiatric, behavioral, and neurodevelopmental health and their translation to community settings. Results will inform future research and policy related to the implementation of approaches based on epigenetics and genomics in research, clinical, and community settings.
| Lappé, Martine; Lau, Lynette; Dudovitz, Rebecca N et al. (2018) The Diagnostic Odyssey of Autism Spectrum Disorder. Pediatrics 141:S272-S279 |
