Emerging Problems in Neurogenomics: Ethical, Legal & Policy Issues at the Intersection of Genomics & Neuroscience
Website: http://lifesci.consortium.umn.edu/conferences/neuro_agenda
Sponsor: The Greenwall Foundation
Award: Presidential Grant
Project Dates: 11/21/07 to 5/31/08
Principal Investigator: Prof. Susan M. Wolf
Co-Principal Investigators: Harry Orr, Ph.D., Tulloch Professor of Genetics and Director of Institute for Translational Neuroscience and the Institute of Human Genetics, and Jordan Paradise, J.D., Associate Director of Research & Education at the Consortium.
Award Amount: $25,000
This award helped fund a project on "Emerging Problems in Neurogenomics: Ethical, Legal & Policy Issues at the Intersection of Genomics & Neuroscience" involving top experts from around the country. The project featured a day-long public conference on 2/29/08 exploring issues in neurogenomics (co-funded by the Academic Health Center, ITN, and the Consortium), a published symposium to follow, and preparation of a follow-on proposal to NIH.
Managing Incidental Findings in Human Subjects Research
Website: http://lifesci.consortium.umn.edu/conferences/incidentalfindings/
Sponsor: National Institutes of Health (NIH)/National Human Genome Research Institute (NHGRI)
Award #: 1 R01 HG003178-01A1
Project Dates: 9/26/05 to 7/31/07
Principal Investigator: Prof. Susan M. Wolf
Co-Investigators: Adjunct Assoc. Prof. Jordan Paradise; Prof. Jeffrey Kahn, Center for Bioethics; Prof. Frances Lawrenz, Department of Educational Psychology; Prof. Charles Nelson, Children's Hospital Boston, Harvard University.
Award Amount: $587,559
This project, led by researchers in the University of Minnesota's Consortium on Law and Values in Health, Environment & the Life Sciences, collaborating with a Working Group of prominent national scholars, tackled how researchers should handle incidental findings identified during research. Incidental findings are defined as unexpected findings beyond the domain of key interest in the research that have potential clinical significance, such as a suspicious mass revealed in a functional MRI (fMRI) study or an incidental finding of nonpaternity in genetic research. What should consent forms say about this and how should IRBs consider the potential for incidental findings in their review of protocols?
Project outcomes include:
a published symposium in a prominent journal collecting the empirical and narrative reports and the targeted papers
Journal of Law, Medicine & Ethics, Summer 2008 Symposium
View article citations list [PDF].
Read the articles [PDF].- publication of the empirical analysis
- publication of the consensus report
- a conference presenting our empirical and normative work
- papers on incidental findings management in 4 targeted research areas and analysis of the legal implications of incidental findings
- a website offering useful tools with web links.
Colliding Categories: Haplotypes, Race & Ethnicity
Sponsor: National Human Genome Research Institute
Project Dates: 7/01/03 - 7/01/04
Principal Investigator: Dr. Jonathan D. Kahn
Co-Investigators: Prof. Jeffrey Kahn, Prof. Susan Wolf
Award Amount: $191,654This project explored the impending collision between biological and regulatory classifications of population subgroups in American society. We focused on the interaction between biological categories emerging from the effort to create a haplotype map of the human genome and preexisting categories specifying race and ethnicity embodied in the U.S. Office of Management and Budget's Directive 15, which governs collection of data by all federal agencies and in federally funded research. This project involved an eminent national group of scholars including: Profs. Troy Duster PhD, (New York University and University of California, Berkeley); Phyllis Griffin Epps, JD (University of Houston); Evelynn Hammonds, PhD (Harvard University); Jonathan Marks, PhD (University of North Carolina, Charlotte); Michael Omi, PhD (University of California, Berkeley); Kim Fortun, PhD (Rensselaer Polytechnic Institute); Dorothy Roberts, JD (Northwestern University); and Charmaine Royal, PhD (Howard University); and University of Minnesota Profs. Donna Arnett, PhD; Rose Brewer, PhD; Colin Campbell, PhD; Jeffrey Kahn, PhD, MPH; Vivek Kapur, PhD; Harry Orr, PhD; William Toscano, PhD; and Susan Wolf, JD.
Genetics & Disability Insurance: Ethics, Law & Policy
Sponsor: National Human Genome Research Institute
Project Dates: 7/01/00 - 12/31/03
Principal Investigator: Prof. Jeffrey Kahn
Co-Investigators: Prof. Susan Wolf, Dr. Dianne Bartels
Award Amount: $413,912This grant was awarded to the Center for Bioethics and Joint Degree Program in Law, Health & the Life Sciences to complete a comprehensive investigation of the ethical, legal, and policy issues in the use of genetic information in private and public disability insurance and to recommend policies based on the findings.