Each person attending the World Stem Cell Summit held in Madison this past week left this conference with a great sense of urgency and personal responsibility to help speed up stem cell research. As a patient advocate who strongly supports state funding of stem cell research I wish to share with you my most important concerns.
Because Wisconsin’s stem cell research program has such extraordinary potential for advancing scientific knowledge that may result in therapies and cures for a wide range of chronic diseases and injuries it becomes an extremely important social justice and fairness issue.
It raises a host of moral, stewardship and health care issues along with critical questions of priority. Should we prohibit or refuse to fund certain types of stem cell research? Which therapeutic stem cell applications should we choose for development? Will we invest in medical cures for the many or elitist medical enhancements and longevity for the few? Will the novel therapies be fairly distributed and affordable? And most important, who is to decide?
It is often forgotten that the question of stem cell research is much more than a major health, economic and political issue. For over one hundred million afflicted Americans and their families it is their number one personal concern above all others and one that affects all their lives daily. For them it has to do with whether they have sufficient hope and energy to suffer through another day and whether real help will ever come.
Most of all, for these afflicted Americans it is the most urgent health and social concern of all. It is even more heart breaking when one discovers that clinical trials to bring this research into the clinic are happening all over the world while the work here lags far behind.
As long as our governor continues to counsel Wisconsin citizens to simply continue to sit back and leave these life and death decisions in the hands of the scientists, citizens and patient organizations remain disengaged. Rather than taking this advice, such social justice and fairness issues should be consensually derived through vigorous public engagement at every stage of the stem cell research process, from the business and research design to product development and distribution. This is so because all research operates in the context of a particular human being, institution, state and budget. It would clearly be an injustice if all stem cell research objectives were framed only for their potential applicability and profitability.
Rather than focusing only upon profit versus general welfare and quality of life considerations a host of other issues should be brought to the table as well, i.e., severity of the illness to be targeted; present gaps in existing therapies; does it meet a public health need, and the needs of our most vulnerable citizens?
Both for the sake of equity and for the welfare of our planet earth social justice and fairness also calls for wherever possible to share new research discoveries in an open and transparent manner and as broadly as possible.
Furthermore, in publicly supported educational and research centers like our own UW, citizen groups must determine the best balance between direct potential clinical applications versus the longer term search for knowledge itself. Too much emphasis on direct application alone will act to undercut the otherwise serendipitous nature of discovery and impose an authoritarian structure that is alien to the scientific culture.
When public funding dollars are involved, a social justice focus helps mediate an otherwise often greedy market-centered research enterprise. Hopefully, the grantee or entrepreneur will then be obligated to select areas of research that will yield the greatest increased welfare of its citizens.
Public engagement and consideration of the above potentially contentious social justice issues can help mitigate further delay in the development of these cell-based therapies. If Wisconsin’s stem cell research initiative is to succeed, Wisconsin taxpayers must begin now to wrestle with these issues in a thoughtful and prudent manner.
It would be fool hardy indeed to rely exclusively upon university faculty research oversight committees or intellectual property officials to make such complex life and death value decisions as well as decisions about the state’s future general welfare and economy. To counter such a possibility taxpayers and patient representatives should sit on university oversight and review committees; frequent, open and transparent stakeholder meetings should be encouraged; and alternative public benefit and intellectual property models welcomed.
This state will not likely confront any greater single issue in the twenty-first century involving its quality of life and economic future. Conservative market forecasts range from a fairly modest $100 million to as much as $10 billion by 2010. By 2030 stem sell research and development is projected to reach over 500 billion dollars. This figure does not include the potential trillions more saved by the elimination or amelioration of the most costly and debilitating diseases for more than one hundred million citizens.
Respectfully,
William R. Benedict
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