We received word this week that the National Conference of Commissioners on Uniform State Laws will likely form a committee to draft revisions to the Uniform Anatomical Gift Act. While we don't yet know what revisions might be proposed, we're hopeful the NCCUSL will amend the UAGA to clearly prohibit the profiteering in donated bodies and tissue, and to strengthen informed consent requirements.
July 1, 2003
FCA has submitted a letter (attached below) asking the National Conference of Commissioners on Uniform State Laws to reopen the Uniform Anatomical Gift Act for possible amendment. Troubled by reports of an ever-growing number of "tissue banks" and biomedical companies exchanging large sums of money for donated human bodies and tissue, we have asked the NCCUSL to begin an investigation and public inquiry as soon as possible.
With the help of the Midwest Bioethics Center at our June 21 Board meeting, FCA has decided to ask the Commissioners to considers these points:
- Whether tissue banks should be held to the same ethical and nonprofit operating standards as whole-organ procurement organizations
- What constitutes "reasonable payment" for processing and distributing donated tissue
- Whether informed consent standards should be strengthened to provide more information to donors and their families
- Whether there should be a system of priority for distributing tissue, with those most in need at the top of the list
- Whether there should be a prohibition against the sale of donated body parts and/or tissue for research
We submitted our position to Carl Lisman, a Burlington attorney who served on a committee in 1987 that helped to revise the UAGA. Mr. Lisman has told us we won't likely know whether the NCCUSL will consider our petition until the early part of August.
Since the Orange County Register produced the award winning series "The Body Brokers" in 2000, reports from the media, the public, and from the Department of Health and Human Services have continued to surface indicating troubling misuses of donated tissue. The Register series found that donated skin, bones, ligaments and other body parts were not necessarily going to those most in need - the critically ill. Instead, the newspaper found, some biomedical companies were able to get skin quickly and easily while burn patients in some trauma centers languished.
The biomedical technology field exploded in the 1990s. Companies were able to produce incredible new medical products from donated tissue that were never possible before. Implants to aid in joint surgery, highly specialized skin graft materials and a host of other high-tech bioproducts have surely raised the quality of life for many. At the same time, this new market raises ethical questions.
The Uniform Anatomical Gift Act, drafted in 1968, created a template whereby states could ensure donated organs were allocated to those most in need. The Act prohibits the sale of donated human bodies and tissue for transplantaion and therapy and has worked effectively to maintain a system of organ donation free from suspicions of profiteering or payoffs. Those who drafted the Act, however, could not have anticipated the exploding biotechnology market. New types of tissue banks have sprung up around the country which solicit whole body donation from the public, sometimes marketing themselves in senior citizen facilities with the promise of a "free cremation." What many donors don't know is that their bodies may not be used first to aid the critically ill. Instead, their tissue may be, in essence, sold to a biotechnology company or used for non-critical cosmetic surgery. These entities don't call the transaction a "sale," of course. Rather, it's referred to as the "collection of a processing fee." The UAGA does allow for the collection of "reasonable fees" for the procurement of tissue, but it does not define what constitutes "reasonable fees" or "valuable consideration." We feel this leaves a gaping loophole.
Directors of university-based willed-body programs (medical schools) are also becoming alarmed. Echoing the findings of "Informed Consent in Tissue Donation: Expectations and Realities," a report by the Dept. of Health and Human Services, some of these medical professionals fear the public's alarm at "body brokering" scandals may rub off on legitimate, regulated medical schools.
" ...given the negative publicity that has surrounded body part brokering in many other states, we fear the potential abuse that this unregulated activity might foist upon whole body donation and organ and tissue banks that for years have operated under the guidelines of the Uniform Anatomical Gift Act," wrote Dr. Karmen Schmidt in an open letter to Funeral Consumers Alliance.
Dr. Schmidt directs the body donation program at Oregon Health and Science University and is the State Demonstrator of Anatomy.FCA wholly supports the humanitarian act of body and tissue donation. We have no wish to discourage donation. To the contrary, we hope tighter regulations, clearer disclosure to donors and families, and more fair allocation of human tissue will give the public the confidence in the system and will encourage much-need donations.