Major advancements in modern biology, engineering, information systems management and other sciences have created perplexing ethical and legal questions regarding such issues as the ownership of human body tissue and genetic information, the appropriateness of reproductive research and technology, and the just distribution of the benefits, risks, and costs of such achievements. Several important ethical issues arise in the conduct of research that can lead to these advances. Ethical issues are particularly complex because of the mix of private and public interests involved in most ventures. The Institute is interested in initiatives that bring together scientists, scholars, government officials, and representatives from the corporate world to address ethical and regulatory issues at the cutting edge of science and technology, including both ethical and regulatory issues in the conduct of research, particularly but not only with human subjects or participants.
One major example is the Institute’s organization and coordination, since 2006, of a Program in Ethics, Bioethics, Research Ethics (EBRE) for the University’s clinical and translational research activities. Excellent resources in ethics, bioethics, and research ethics exist across the University, and the EBRE Program is an effort to coordinate educational and guidance activities in research ethics as systematically as possible. Hence, the overall objective of this Program is to create an institutional framework of education, guidance, support, and scholarship that facilitates and promotes clinical and translational research while enhancing the protections of participants’ rights and welfare. This program seeks to address the entire range of ethical issues that arise in research from the bench to the bedside and the community.
The specific aims of the EBRE program are threefold: (1) To integrate ethics fully into the University’s educational and operational activities in clinical and translational research; (2) to promote conceptual, normative and empirical investigations and scholarship in research ethics; and (3) to establish an institutional structure to realize and sustain Aims 1 & 2.
A second example is Bioethics and Biotechnology, an executive education program in ethics designed in collaboration with representatives from the biotechnology industry. This program features the ethical issues that arise in research in biotechnology.
Another example is the Virginia Advisory Committee on Ethical, Legal, and Social Issues in Genetic Research (VAC) was established in 2002 to serve as a resource for researchers in Virginia universities who are doing collaborative genetic research, under a Tobacco Settlement Fund grant, to predict individuals most at risk for developing clinical disease as a consequence of tobacco use. With this important information, interventions could be developed to target high-risk youth smokers.
The VAC is comprised of 3 faculty members from each of the six universities collaborating under the grant, and is coordinated by James Childress and Ruth Gaare Bernheim of the UVA Institute for Practical Ethics and Public Life. The VAC brings together (1) experts in ethics, law, social sciences and public policy as related to research and policy in genetics, and (2) researchers in genetics.
The goals of VAC are to identify the ethical, legal and social issues raised by genetic research, through discussions with researchers, through independent research on ethical, legal and policy issues, and through focus groups with the public; convene meetings of the Advisory Committee for reflection and deliberation on the issues in the first two years; facilitate the development of Working Papers and Policy Reports and Recommendations on specific ethical, legal and social issues; and provide an on-going resource to researchers and others throughout the project's duration for consultation and reflection on ethical, legal, and social issues as they arise, as well as on new policy developments at the state and national levels that have an impact on the research project.