Genomics and Ethics Projects
Genetics of Nicotine Addiction—Examining Ethics and Policy
NIH/NIDA & NHGRI (PI: Barbara A. Koenig, Ph.D.)
The purpose of this study is to provide policy makers with a clear understanding of the potential impacts and limitations of genetic research, ensure that genetics will integrate harmoniously in measures to reduce tobacco use, and contribute to the public policy debate about the genetics of addiction, by providing a comprehensive analysis of nicotine addiction—an illustration of the ethical complexities inherent in behavioral genetics research.
EMR Phenotypes and Community Engaged Genomic Associations
NIH/NHGRI (PI: Christopher G. Chute, M.D., Dr.P.H.)
As part of the Electronic Medical Records and Genomics Network (eMERGE Network), Mayo Clinic is participating in a national consortium that is developing procedures for combining DNA data with electronic medical record systems. Using an ongoing genomic study of heart disease linked to electronic medical records, Mayo’s bioethics component of study includes a systematic examination of patient consenting practices and patient understanding. The goal is to assure the ethical conduct of genomic research that links genomic data with electronic medical record data. A combination of in-depth patient interviews, consenting “experiments," and community engagement using Deliberative Democracy methods will be employed.
Ethical, Legal, Social, and Policy Challenges in DNA Biobanking
Mayo Center for Individualized Medicine (PI: Barbara A. Koenig, Ph.D.)
In conjunction with the above project, we are conducting additional studies to create an empirical base from which to guide normative policy recommendations for DNA biobanking, with the collection of detailed information about the moral and practical concerns of potential biobank participants. This component includes in-depth, open-ended interviews with 75 individuals, and additional experiments in community engagements. A multidisciplinary workgroup will assist in the analysis.
DNA as a Unique Identifier: Privacy, Trust, and the Future of Personalized Medicine
Greenwall Foundation (PI: Barbara A. Koenig, Ph.D.)
In this project, we will expand our efforts beyond the experience of a single organization (Mayo Clinic) to an in-depth consideration of national health policy concerns surrounding the issue of DNA as a unique identifier. It will also set the stage for further empirical work that is national in scope.
Law and Ethics of Drug Addiction Genetic Research (LEDGER)
NIH/NIDA and NHGRI (PI: Howard Stone, University of Texas)
The primary goal of the LEDGER project is to improve our understanding of the ethical, legal, and social implications that may be raised by the use of drug addiction genetic information in criminal justice applications. Also included under the project is an extensive plan to disseminate a variety of study materials and related resources developed through project activities. The goals and aims are intended to be responsive to the National Institutes of Health’s expressed interest in issues surrounding the use of genetic information in non-health care settings. For more information regarding the LEDGER project, go to the University of Texas Health Science Center at Tyler.
