The UC Bioethics Collaboratory is currently focused on four important research projects which are detailed below.
We have established a working relationship with the Innovative Genomics Initiative (IGI), which are at the center of rapidly expanding CRISPR cas9 research, research whose ethical implications is generating international attention. Through this relationship we are focusing on both the ethics of science communication and the ways that “deep structures” in science, such as pressures for funding, are affecting the life sciences. This collaboration has resulted in one publication to date in the December 2015 issue of the American Journal of Bioethics (AJOB), as well as plans for future work. The article, “‘Editing’ Genes: A Case Study About How Language Matters in Bioethics,” describes how metaphors can contribute to misleading communication about the function and consequences of a technology.
On behalf of the Collaboratory, our UCSF site secured funding from the California HealthCare Foundation to hold a statewide meeting on December 12, 2015 to bring together California’s bioethics and palliative care leaders, along with policy makers. The purpose of the invitation-only conference was to identify ethical concerns that health systems across the state will need to navigate in order to respond to recently enacted physician aid-in-dying legislation. Governor Brown signed the law on October 5th and the foundation provided funding on November 1. California’s size and diverse population will pose challenges not faced in other states where physician-aid-in dying is legal. The Collaboratory helped make it possible to quickly convene this meeting. 110 people including bioethicists, providers, and policymakers attended this meeting. Next steps include preparing a report, posting additional resources to the website created for the event, and setting up a state-wide research network to study the law’s implementation. A particular focus will be determining how to prevent the law from having adverse impacts on California’s multi-racial, multi-ethnic populations. The website for the event and for later follow up is eoloptionacttaskforce.org.
Big Data and Precision Medicine
In November 2015 we connected with the Institute of Computational Health at UCSF. This Institute is home to one of the world’s largest precision medicine efforts, which presents opportunities for bioethics related work. We are currently in the process of identifying research and graduate education opportunities that the collaboration between the Collaboratory and the Institute would create.
Ethics and the Neurosciences
Neurosciences work that generates novel ethical concerns is occurring across the UC universities. Examples of this work include the development of nanomaterials to monitor and possibly intervene at the level of individual neurons, as well as efforts to begin a Phase I trial of a stem cell gene therapy transplant into the brains of Huntington’s disease patients. Introducing these kinds of modalities into the central nervous system of humans is particularly challenging, given the limitations of both in vitro and in vivo research models and the desperation of patient populations. Work that the UC Davis Bioethics Program was previously doing with stem cell researchers, biomedical engineers, and neurologists has now been expanded to include other faculty from our Collaboratory. Also, members of our Collaboratory have been working with several colleagues in Canada, Germany, and the Netherlands to pursue funding for a large international meeting focused on ethical issues unique to clinical research on neurological disorders.