Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some
Year: 2019
Type: article
Abstract: The expansion of both formal and informal frameworks of "engaged" research in translational research settings raises emerging and substantial normative concerns. In this article, we draw on findings from a focus group study with members of a national consortium of translational genomic research sites. The goals were to catalog informal participant engagement practices, to explore the perceived roots of these practices and the motivations of research staff members for adopting them, and to reflect on their ethical implications. We learned that participant engagement is a deliberate strategy by research staff members both to achieve instrumental research goals and to "do research differently" in response to past research injustices. While many of the participant engagement practices used in translational genomic research are not new, important insights can be gained through a closer examination of the specific contours of participant engagement in this context. These practices appear to have been shaped by the professional training of genetic counselors and by the interests and needs of participants who enroll in clinical genomics studies. The contours of this contemporary application of engaged research principles have relevance not only to clinical genomics research but also to translational research broadly, particularly for how communities of clinical researchers are interpreting the principle of respect for persons. Our findings invite normative questions about the governance of these practices and sociological questions about whether and how clinical researchers in other professions are also engaging participants in translational research settings.
Source: Ethics & Human Research
DOI: 10.1002/eahr.500029
Institutions: University of Louisville, HudsonAlpha Institute for Biotechnology, University of Washington, University of California, San Francisco, National Human Genome Research Institute, Dan L Duncan Comprehensive Cancer Center, Seattle Children's Hospital, Treuman Katz Center for Pediatric Bioethics and Palliative Care, Columbia University
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
Awards: Presenting Diagnostic Results from Large-Scale Clinical Mutation Testing, Exploring Precision Cancer Medicine for Sarcoma and Rare Cancers, Return of Research Results from samples obtained for Newborn Screening, South-seq: DNA sequencing for newborn nurseries in the South, G2683385584, Impact of return of incidental genetic test results to research participants in t, Genomic Diagnosis in Children with Developmental Delay, CSER RoRC Centralized Support Coordinating Center, Applying Genomic Sequencing in Pediatrics, Innovative Approaches to Returning Results in Exome and Genome Sequencing Studies, Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment, Challenges of Informed Consent in Return of Data from Genomic Research, G521457947, The Use of Whole-Exome Sequencing to Guide the Care of Cancer Patients, Evaluating utility and improving implementation of genomic sequencing for pediatric cancer patients in the diverse population and healthcare settings of Texas: The KidsCanSeq Study, Clinical sequencing in cancer: Clinical ethical and technological studies, Returning research results in children: Parental Preferences and Expert Oversight, Center for Transdisciplinary ELSI Research in Translational Genomics, North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing 2, Clinical Implementation of Carrier Testing using NGS, Returning Research Results of Pediatric Genomic Research to Participants, The Presumptive Case against Returning Individual Results in Biobanking Research, Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Integration of Whole Genome Sequencing into Clinical Medicine, University of Washington Biomedical Informatics and Data Science Research Training Program, Genomic Ascertainment - Clinical and Behavioral Aspects
OpenAlex ID: W2973280827