Modern genetic research gives us unprecedented ability to understand and manipulate fundamental biological processes. Our growing potential to understand and shape the world in genetic terms also seriously challenges basic beliefs and ethical norms. At the same time, values and norms affect the way genetic research is designed and conducted. Despite the significant ethical and societal implications of emerging genetic research, there are few venues for geneticists to participate in interdisciplinary research and to discuss these issues.
The Center for Integration of Research on Genetics and Ethics (CIRGE) was established in 2004. The overall goal of CIRGE is the proactive identification and integration of ethical, legal and social considerations into the design and conduct of current and emerging genetic research. Our thematic focus is on genomics of behavioral traits.
One of the promises of genomic research is that information about a genetic disease or risk will increasingly provide the basis for screening and prevention to reduce morbidity and mortality. As a result, much of the meaningful medical action stemming from genetic information will take place under the auspices of primary care providers, underscoring the similarities rather than differences between genetic and other medical information.
The ELSI program of the Human Genome Project has successfully calmed the fears of most constituents regarding the potential for a "eugenic" misuse of modern genetic technology. However, one constituency still has major fears regarding the HGP and eugenics. This is the disability rights (DR) community. DR critiques of the HGP are based on a distinct concept of disability from that of mainstream medicine including most supporters of the HGP.
Our primary goal in this proposed project is to examine and elucidate the ethical, legal and social implications of the use of drug addiction genetic information in criminal justice settings; our secondary goal is to provide related, needs-specific training, materials and resources to a stakeholder group comprised of criminal justice professionals.
The overall aim of the Center for Genomics and Society (CGS) renewal plan is to carry out an integrated set of transdisciplinary research, training, and policy activities addressing ethical, legal and social Issues involved in the application of genomics to the general public. Genomic testing is already being offered to the general public in an unstudied way by direct-to-consumer companies and through other venues and the use of DNA sequencing to screen populations for preventable health risks is being discussed.
Over the past two decades, forensic DNA profiling has become an important tool in the investigation of human rights abuse and genocide. There is, however, little understanding of the ethical, historical, political, psychosocial, or policy dimensions of this application of genetic technology. The lack of a well-developed body of relevant research, and few regulations to guide the implementation of humanitarian DNA identification projects, means that organizations and individuals must develop their own ad hoc rules and procedures for the identification process.
This application proposes to assess the societal impact of genetic tests offered directly to consumers (DTC) and to develop policy options for DTC oversight that will balance the benefits of promoting availability of tests that can have a positive impact on public health and preventing harm to the public as a result of misleading claims, inappropriate tests, or inaccurate test results.
Evolving intellectual property (IP) policies of governments and organizations are impacting biotechnology sectors and access to genetic materials for development of pharmaceuticals. The National Institutes of Health, through the Human Genome Project among others, specifically recognizes the need for policy options in the area of intellectual property to facilitate the widespread use of genetic and genomic information in both research and clinical settings.
The purpose of this study is to contribute empirical data and critical analysis relevant to patenting and licensing of DNA sequence patents, focusing on genomic diagnostics. Recent survey data suggest that patents have generally not impeded research, but note that problems may arise in the area of diagnostics. Technologies for sequencing, genotyping, and gene expression profiling have created new classes of genomic diagnostics that can simultaneously test thousands of genes for mutations and variations, or for expression level differences.