Wisconsin taxpayers and health care groups that are following the recent challenges to UW-Madison’s patents on embryonic stem cell lines may not be fully aware of the much larger and more fundamental issues 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. How many of us really know how many tissue samples we have given away or how they were used? Are informed consent agreements now signed 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 nonfiction and contains both easily understood scientific information and a cogent narrative about the way science and our health care system interact with the public.
The 1980 Bayh/Dole Act supports the present practice of using tax dollars and our citizens’ raw materials -- cells and genes -- for scientific innovations and then transforms them into private property. Such a patent system takes away public control, decision-making and accountability and gives it to scientists whose salaries are paid by you and me.
The result is that both the state of Wisconsin and individual citizens have to pay twice for health care: first to provide the university labs and salaries before a bio miracle invention occurs, and again when they pay for 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 tissue samples 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: Signed informed consent agreements and National Institutes of Health bioethical guidelines are not legally binding or based on statute. Instead the human tissue donation process is carried out at the local level and in an inconsistent fashion. The selling of tissue samples is presently prohibited or discouraged based largely on the belief that payments or royalties directly to patients would 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 on the perspective of the scientists and private investors. Increasingly even the research community is beginning to advocate for fewer patents, particularly when dealing with biological or naturally occurring materials such as stem cells and genes. Many believe that patenting of such natural products versus research tools or processes is the real culprit delaying research and preventing open communication among their peers.
I believe in a short time a more complementary balance between health care research and health care delivery systems will be reached, and that research and health delivery will become more integrated and mutually supporting. Policymakers will have to become more fully engaged, however, rather than sitting on the sidelines and allowing only scientists and 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 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.
William R. Benedict of Madison is a patient advocate for stem cell research and blogs at danecountyalmanac.blogspot.com.