Ownership of human tissue a big issue in curbing health costs

Capital Times - Guest Column

Wisconsin taxpayers and health care groups who are following the recent public interest challenges to UW Wisconsin’s human embryonic stem (ES) cell line patents may not be fully aware of the much larger and more fundamental issues that are at stake.

Should human body parts or tissues be patented and then bought and sold to the highest bidder in the marketplace? Human tissue samples are taken from blood tests, biopsies or during surgeries. As citizens how many of us really know how many tissue samples we have given away or how they were used? Are signed informed consent agreements now used in the donation process legally binding? Lastly, should patients be compensated for allowing another to use her or his human tissue samples?

Answers to these and related questions are rarely simple to grasp or answer and often remain confusing. Therefore, as a retired social worker and regular patient advocate for state funding of stem cell research, I was delighted to read Rebecca Skloot’s award winning book, “The Immortal Life of Henrietta Lacks.” While this book reads like a gripping novel it is non-fiction and contains both easily understood scientific information and a cogent narrative about the way science and our health care system interacts with the public.

The 1980 Byah/Dole (intellectual property) Act supports the present practice of using public tax dollars and our citizens’ raw materials – cells and genes - for scientific innovations and then transforms them into private property and the market place. Such a patent system takes away public control, decision-making and accountability and gives it to scientists whose salaries are paid for by you and me.

The result is that both the state of Wisconsin and individual citizens having to pay twice for their health care: First, to provide the university labs and salaries before a bio miracle invention occurs. And again, when they have to pay for subsequent exorbitantly priced commercial medications. Presently there is no direct monetary or in-kind payback either to the state or to the individual taxpayer or health care consumer.

With respect to giving human sample tissue to doctors, hospitals or universities, Skloot found that indeed only a few of us presently know when and how often we have given away our human tissue or know how it was used.

This is so for at least two reasons: First, written and signed informed consent agreements and National Institute of Health bioethical guidelines are not legally binding or based upon statute. Instead the human tissue donation process is administered and carried out at the local level and in an inconsistent fashion. The selling of tissue samples are presently prohibited or discouraged based largely on the belief that payments or royalties directly to patients would act to exploit the poor and would also unnecessarily complicate and stifle communication between scientists.

Both reasons are false but largely assumed or accepted by the public based upon the perspective of the scientists and private investors alone. In fact increasingly even the research community is beginning to advocate for fewer patents particularly when dealing with biological or natural occurring materials such as stem cells and genes. Many believe that patenting of such natural products versus research tools or processes are the real culprits for delaying research and preventing open communication among their peers.

I believe it is only a short time period before a more complimentary balance between health care research and health care delivery systems become more integrated and mutually supporting. Policy makers will have to become more fully engaged, however, rather than sitting on the sidelines and allowing only scientists and free market investors to manage this increasingly large piece of our public health care dollar. This more aggressive role for our state government will happen only when more and more taxpayers begin to look upstream and carefully consider what is causing ever increasing higher health care prices. I believe reading Rebecca Skloot’s stellar book would greatly facilitate beginning such a public examination.

Finally, I believe citizens will soon also assume a larger role in how their human tissue will be used in the lab or the marketplace and demand a fair price. The present practice of exploiting a citizen’s body parts or tissue for mere profit which is a business involving billions of dollars each year, will be no more.

Benedict is a retired social worker and blogs at danecountyalmanac.blogspot.com.

Declaration of Cooperation Brings Hope

The recent Declaration of Cooperation between California and Wisconsin’s stem cell programs was great news to myself and all who live daily with debilitating diseases.

This latest declaration strengthens the already existing Interstate Alliance on Stem Cell Research in which UW is already a member. The signing for this event was held in California at the annual meeting of the Society for Stem Cell Research. SSCR is an international organization and a world leader in stem cell collaboration.

The California compact with Wisconsin creates a framework for joint funding, and identifies opportunities to further the advancement, promotion and development of stem cell therapies. This is exactly what we all want!

It is reassuring and to Wisconsin’s credit to be reaching out both in sharing its scientific know how while at the same time learning from its peers.

The California stem cell program is a 3 billion dollar public initiative which is using state bonds to fund the construction of stem cell research facilities and to recruit the finest scientists in the world.

By requiring matching funds California has demonstrated that by contributed public dollars via grants and loans it has successfully harnessed and stimulated both public and private stem cell investment without contributing one dime to the state’s deficit.

It also remains a model for both its public accountability and transparency. This is so in part due to its inclusion of patient advocates into its governing structure and an outcome-oriented strategic planning and reporting process like none other.

Benedict is a patient advocate for stem cell research and blogs at: danecountyalmanac.blogspot.com