The emergence of genomic medicine has not been without unique concerns that continue to challenge clinicians working in this arena. Genomic test results have implications for individuals other than the person tested. Related to this, interpretation of genomic data often requires several related individuals; and even then what can be known about the meaning of an individual's specific variants is, and will continue to be, a function of big data analysis of the genomic data of many thousands (or even millions) of individuals.
The advent of clinical genome sequencing to identify patients at risk for serious diseases and to tailor treatments promises to greatly improve health outcomes and provide a foundation for the delivery of Precision Medicine. However, even as laboratory methods to perform sequencing become highly efficient, uncertainty around the optimal breadth and economic value of sequencing as well as ambiguity around which individuals should be tested presents a critical barrier to wider use.
This project will analyze how US white nationalists are appropriating, adapting, politically mobilizing and changing themselves in response to contemporary genomics research. White nationalists have gained public prominence since 2015 trying to bring greater visibility to their movement and policy ideas. Ideas from genetics have been prominent in their public pronouncements and in online discussions among white nationalists.
Human genome editing is a powerful tool for creating precise changes to the genome, an organism+D6s complete set of genetic material. With these advances has come an explosion of interest in the possible applications of genome editing, both in conducting basic research and the potential to prevent, treat, and cure disease and disability. Genome editing could provide insights into reproductive failures and improve contraception and fertility treatments.
Recent expansions in prenatal genetic testing have renewed concerns from both disability advocates and right- to-life movements that these tests serve primarily to enable elective terminations, However, as prenatal genetic testing becomes easier, safer, and more accessible, many women say they choose it for a very different reason: preparation.
PROJECT NARRATIVE Advances in genome editing, embryology, and stem cell science are making it possible to imagine, and create, new kinds of human-animal chimeras that are both more biologically and more ethically complex than previously created chimeras. This project aims to develop clear, reasoned, and practical recommendations and educational materials to assist researchers, research institutions and their oversight bodies, funders and the public in identifying, understanding, and managing the ethical issues associated with human-animal chimera research.
PROJECT NARRATIVE Preparation is often cited as a reason for offering and for accepting prenatal genetic screening and diagnosis. However, this term has no clear definition, and thus it is impossible either to prove benefit or to recommend best practices.
Project Narrative. Advances in psychiatric, neurologic and behavioral (PNB) genetics have brought the prospect of predictive and diagnostic genomic testing for many PNB conditions closer to clinical application. The potential for such findings to profoundly affect core elements of personhood?including identity, perceived responsibilities, and life trajectories?makes it essential to understand the impact of such information on individuals and families.