SCBE brings in a significant number of grants from federal sources as well as from private foundations. In addition, the Center for Integration of Research on Genetics and Ethics (CIRGE) was established at Stanford/SCBE in September 2004. It is one of the four interdisciplinary Centers of Excellence in Ethical, Legal, and Social Implications (ELSI) research created by the National Human Genome Research Institute of the U.S. National Institutes of Health, to proactively identify and deliberate ethical, legal, and social issues in current and emerging genetic research.
Center for Clinical and Translational Education and Research – Ethics Core
The overarching mission and goal of the Stanford University School of Medicine is to translate discoveries into medical practice and clinical care. This NIH-funded project’s goal is to reassess, refine and refocus transformation of the clinical research enterprise. Ethics play a central role in this translational process, particularly given the tremendous ethical and regulatory challenges posed by cutting edge technologies, including stem cell research. Integrating ethics into the structure and culture of the research process is essential. Bioethics is needed to maintain an up-to-date understanding of scientific and translational developments in order to understand how ethical and regulatory frameworks do or do not apply, and develop new frameworks where necessary. The need for robust ethics support spans all areas of biomedical research but is especially obvious when research activities are undertaken in people. This project has three aims: provide ethics training throughout the continuum of education, provide early ethical intervention in the CTR (clinical translational research) process through integration into the support offered by SCCTER (Stanford Center for Clinical and Translational Education and Research), and transform the culture of research by developing innovative approaches to ethical dimensions of CTR.
Collaborative Research – What is Testosterone Doing in Female Athletes?
While the scientific consensus of biological sex is that no definite attribute can objectively divide all males from females, one marker of sex, testosterone (T), is a precisely defined molecule. There are profound scientific divergences concerning the production and function of T. In some accounts, T drives athleticism while in others not. In some disciplines, high T in a woman reflects masculinization; in others, it may reflect intense athletic training. Because the science is non-congruent, new policies restricting eligibility of female athletes with naturally high T inevitably draw upon particular social and biological versions of T and modes of linking T to athleticism. The policies have profound effects not only on how athletes are regulated, but also on ideas about gender, strength, and the relation between sex and race. This project will complicate common understandings of biological sex and its relationship to gender, sexuality, and race in the high profile arena of sports. The project will guide policy by identifying empirically unsupported claims about T in women athletes and the stakes implicit in various scientifically sound yet incommensurable amounts of T and female athleticism.
Beyond Consent: Patient Preferences for Governance of Use of Clinical Data and Samples
While there is growing body of literature on patient preferences with regards to clinical data use, including attitudes towards privacy, sharing, and informed consent and returning individual results of clinical significance, there are still many important unknowns. This project will provide generalizable data from actual clinical contexts in which to assess the diversity of patient attitudes and preferences regarding research on a range of clinical data types and data sharing. Our diverse sample population allows us to explore the influence of culture ambiguity. We will build our current work to produce videos in multiple languages that illustrate the different ways that clinical data and samples are collected, used and shared for a variety of purposes. Our study aims to asses and compare patient attitudes towards use of clinical data in a racially and ethnically diverse patient population, including perception of and weighing of tradeoffs between the risks and benefits and preferences for how different types of clinical data should be accessed, used and shared. It also aims to assess and compare patient preferences for the consent process and governance of biological samples used in research with electronic medical records in a racially and ethnically diverse patient population.
Assessing the Impact of Videos and Comics on Knowledge and Attitudes about Randomization for Research on Medical Practices
The primary objective of this project is to compare the effects of the previously developed animated narrative videos on knowledge about and attitudes towards research on medical practices (RoMP) among members of the general US population with three alternative media formats. The primary outcome measure is knowledge score, and secondary outcomes are key attitudes to randomized research on medical practices (i.e., willingness to participate in randomized research, preferences for notification or consent, and assessment of risks of randomization).