-
NIH Sep 1, 2007 | K99
Ethical and Social Issues in the Study of Genetics of Complex Traits
Institution: STANFORD UNIVERSITY
FOA Number: PA-06-133
Abstract
The long-term objective of this Pathway to Independence Award (K99/ROO) is to train to become an independent researcher in bioethics with a strong interdisciplinary foundation in genetics and epidemiology. My research plan is to characterize ethical and social issues in genetic studies of complex traits and evaluate how and whether they differ from those in genetic studies of Mendelian traits. This research will enable current and future complex disease researchers and policy makers to understand and address these issues proactively.
The specific aims of the Mentored Phase (K99) of this award are: 1) to obtain training in qualitative research methods, such as those used in cultural anthropology and oral history research, 2) to expand my training in ethics and my expertise in genetics, specifically current issues in genetics and ELSI issues from the genetics researcher perspective. These training goals will be accomplished through formal coursework and directed readings, participation in seminars and activities at the Stanford Center for Biomedical Ethics and the Department of Genetics, teaching activities and consultation with members of a multi-disciplinary advisory board. During the training period, I also will conduct pilot studies to ensure the successful transition to the Independent Investigator Phase of the award (ROD).
The specific aims of the Independent Investigator Phase (ROD) of this proposal are:
-Through semi structured interviews, characterize and analyze the perspectives of genetics and epidemiology researchers and research advocacy group leaders on ethical issues in conducting complex disease research and on the construction of the meaning of genetic data for complex disease risk and identity;
-Through analysis of data from pilot studies, focus groups and surveys, characterize and analyze the perspectives of participants in large studies of Parkinson's Disease and autism about ethical and social concerns, including consent, return of results, sharing of samples and data, the meaning of genetic data, and potential benefits and harms;
-Develop, implement and evaluate a protocol for an "embedded ethicist" to work collaboratively with a team of researchers at the Veterans Affairs Cooperative Studies Program to proactively identify and address ethical and social issues in ongoing complex disease research.FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
K99Project Number:
K99HG004316Start Date:
Sep 1, 2007End Date:
Aug 31, 2009PROJECT TERMS:
Address, Advocacy, Attitude, Autistic Disorder, Award, base, Benefits and Risks, Bioethics, Case-Control Studies, Complex, Complex Genetic Trait, Consent, Consultations, cooperative study, Cultural Anthropology, Data, Data Analyses, design, Development, Disease, disorder risk, Educational process of instructing, Ensure, Ethical Issues, Ethicists, Ethics, expectation, Facility Construction Funding Category, Family Study, Focus Groups, Foundations, Future, Genes, Genetic, genetic epidemiology, Genetic Research, Genome, genotype, genotyping technology, Goals, Human Genome Project, Huntington Disease, Individual, Interview, Malignant Neoplasms, member, Mentors, Nature, novel strategies, Oral, Parkinson Disease, Participant, Pathway interactions, Phase, Pilot Projects, Policy Maker, Population, Population Study, programs, Protocols documentation, Qualitative Research, Reading, Recording of previous events, Research, Research Methodology, Research Personnel, retinal rods, Risk, Sampling, Sickle Cell Anemia, size, social, Structure, success, Surveys, tool, Training, trait, Variant, Veterans, Work
Skip to main content
