Session 1: Publics, Advocacy and the Practices of Science
Although not unprecedented in medicine, patient activism in stem cell medicine has played an important role in securing research funds and publicizing research possibilities. Various groups have debated the issues of therapeutic research in different ways. For example, disability rights groups sometimes claim that advocacy politics unfairly essentializes and medicalizes disability while others use the burden of disability to claim need for medical cures and research funding. Beyond these effects, this panel is also interested in how patient advocacy influences research agendas, the translation of research into clinical practices, and patient influences in redefining notions of therapeutic efficacy. We envision this session as an exploration of the ethical issues that arise in the interplay of patient activism/advocacy and disability rights. That is, we want to explore the ethical issues aroused in these relationships--what are their forms and outcomes—but also how do these forms ask us to rethink theory and method of the ethical?
Session 2: Tissues, Subjects and Procurement
Most of the ethical debate in stem cell medicine has focused on issues of procurement. Use of human embryonic stem cells for research, the ways they are obtained, and the modification, transfer, and/or destruction of the nucleus, have triggered enormous political, legal and ethical debates. Numerous interest groups have joined in this discussion: pro-life advocates, patient advocates, reproductive rights activists, industry leaders, bioethicists, religious leaders, researchers, and elected officials. Opposition to use of human embryonic stem cells has generated sufficient opposition to prevent federal and state research funding. This session will focus on how the debates over the ethics of procurement are helping to re-theorize the domain of the ethical in a world where stem cell and regenerative medicine will go forward, regardless of attempts at regulation.
Session 3: Diversity and Distributive Justice
Questions of social justice loom in stem cell medicine. That is: whose interests are served and whose interests are subordinated in this new medical field? There is a large literature on the concept of social justice in medicine focused on distribution of health resources, benefits and burdens in relation to social inequalities, and tied to a larger set of theory and debate over the nature of and reasons for health disparities. How can the debate be extended to attend to issues of minority and diversity representation nationally and transnationally in stem cell medicine? An expanded sense of “distributive justice” would include a wide range of concerns that encompass and go beyond existing ethical and political debates, including access to trials, therapies, and tissue banks, access to policy-makers, control over financial resources, global distributions and circulations of profit-making industries in human tissues and therapeutic interventions, ethical templates for defining objectives of research transnationally, and even reconfiguring protocols for clinical trials in global contexts. Perhaps more than ever before, the international traffic in stem cell news and research has created a more “globalized” field for biomedical research, even as probable health disparities in stem cell medicine within the US go relatively unremarked.
Session 4: Academy-Industry Alliances
Although research alliances between the academy and private industry have a long history, made more complex by the post-war US expansion of government funding of biomedical research), stem cell medicine has raised the visibility of and brought about new and more plentiful opportunities for such alliances. Never before has the public been so ready to explore the implications of these alliances as state-funded medical research institutions have become increasingly tied to commercial markets. What are the risks and dangers of such alliances to science, to the university, and to the public, and to what extent do we need new models for notions of risk and benefit as these alliances become more plentiful? How do concerns over intellectual property, the need for profit in pharmaceutically-driven research, and the control of research funds by private interests generate a field of ethical concerns within which stem cell medicine can function? What are the underlying ethical implications that emerge from these connections? What are the risks and benefits that are raised by these new arrangements? What kinds of ethical oversight should be implemented, and should commercial for-profit entities be subject to the same kinds of restrictions as nonprofit research bodies?
Session 5: The Idea of Ethics in Science
Although research alliances between the academy and private industry have a long history, made more complex by the post-war US expansion of government funding of biomedical research), stem cell medicine has raised the visibility of and brought about new and more plentiful opportunities for such alliances. Never before has the public been so ready to explore the implications of these alliances as state-funded medical research institutions have become increasingly tied to commercial markets. What are the risks and dangers of such alliances to science, to the university, and to the public, and to what extent do we need new models for notions of risk and benefit as these alliances become more plentiful? How do concerns over intellectual property, the need for profit in pharmaceutically-driven research, and the control of research funds by private interests generate a field of ethical concerns within which stem cell medicine can function? What are the underlying ethical implications that emerge from these connections? What are the risks and benefits that are raised by these new arrangements? What kinds of ethical oversight should be implemented, and should commercial for-profit entities be subject to the same kinds of restrictions as nonprofit research bodies?
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