Consider fairness in stem-cell push

Wisconsin State Journal/Guest Column

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 for elitist medical enhancements and longevity for the few? Will the novel therapies be fairly distributed and affordable? And most important, who is to decide?

For more than 100 million afflicted Americans and their families, stem cell research is much more than a health, economic and political issue. It is their No. 1 concern. It’s a matter of whether they have enough hope and energy to suffer through another day and whether real help will ever come.

It is heartbreaking 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.

Resident and patient organizations will remain disengaged 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.

A consensus on social justice and fairness issues should be attained through vigorous public engagement at every stage of the stem cell research process--- from the business and research design to product development and distribution.

All research operates in the context of a particular human being, institution, state and budget. It would be an injustice if all stem cell research objectives were framed only for their potential applicability and profitability.

A host of other issues should be brought to the table as well, such as the severity of the illness to be targeted, present gaps in existing therapies, public health needs and the needs of our most vulnerable citizens?

In publicly supported educational and research centers like our own UW-Madison, 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.

Public engagement and consideration of these 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.