An integral activity of CIRGE is the hosting of workshops on ethical, legal and social issues related to genetic research in order to engage CIRGE scholars and members of other interdisciplinary campus programs and centers in discussion and debate. The hope is that these workshops lead to the development of guidelines that inform policy and ethical considerations in wider society. Recent workshops are detailed below.
April 2007: Reporting Copy Number Variant Results to Research Participants
This two-day policy workshop brought together a variety of interdisciplinary experts, from across America and beyond, to explore the ethical and societal ramifications of innovative technologies designed to detect copy number variants (CNVs).
Scanning for both de novo and inherited CNVs across genomes, scientists hope to link CNVs to risks of given phenotypes. Yet this new methodology raises challenging concerns:
- What is the meaning of the data generated by these genome-wide screens for CNVs?
- Should CNV results be returned to research participants and if so, how?
- Should CNV results be treated differently than other research results in terms of reporting back to participants?
The goal of this workshop was to investigate the questions above and to propose guidelines for the return of CNV results.
June 2006: Use of Array Comparative Genomic Hybridization (aCGH) and Other Whole-genome Analysis for Prenatal Screening
This day-long policy workshop focused on the implications of new technology in whole-genome analysis on prenatal screening in research and clinical contexts. The goal of the workshop was to produce an ethical framework for professional organizations to help them develop guidelines for whole-genome analysis in prenatal screening. Questions discussed included:
- What is the state of the technology and its current and near-future clinical applications?
- What are ethical and social issues related to this technology?
- What should be taken into account in the development of guidelines for the use of this technology for prenatal screening?
July 2005: Offering Genetic Research Results to Subjects
This two-day policy workshop brought together over twenty scholars from scientific, ethical and legal perspectives to discuss concerns on the return of research results to individual subjects who participate in genetic research. The goal of the workshop was to produce recommendations for researchers on the return of research results as well as detail model informed consent language. Questions addressed in the workshop included:
- What results should be reported to subjects, and for what kinds of genetic research?
- When should results be reported to research subjects -- during the original project, after and/or in downstream studies?
- How should results be reported, and by whom?
- To whom should results be reported, and should family members also be notified?