The Consensual Donation and Research Integrity Act would protect the dignity of donors and offer peace of mind to families.
With the introduction of the Consensual Donation and Research Integrity Act (S. 2191/H.R. 4275), Congress took a vital step toward bringing necessary minimum standards to the largely unregulated process of whole body donation. The National Funeral Directors Association (NFDA) thanks Sens. Chris Murphy (D-CT) and Thom Tillis (R-NC) and Reps. Gus Bilirakis (R-FL) and Lizzie Fletcher (D-TX) for introducing this important legislation.
“NFDA fully supports and applauds congressional efforts to pass the Consensual Donation and Research Integrity Act, which will provide long-overdue accountability and transparency to the whole-body donation process and ensure donors’ bodies are treated with dignity and respect at all times,” said NFDA Senior Vice President, Advocacy, Lesley Witter, MPA, CAE.
Donating the body of a loved one to medical research can bring healing and comfort to a family, knowing that their gift may help advance scientific knowledge and discoveries. However, unscrupulous body brokers, who often aggressively target the poor and elderly, take advantage of this generosity and sell or lease bodies and body parts at a significant profit.
“Non-transplant tissue banks that accept whole body donations need to be better regulated,” said NFDA President Jack Mitchell, CFSP, CCSP. “There are regulations that govern how the body of an individual may be donated, but there is little federal or state oversight over what happens to that donation. This means that anyone, regardless of expertise, can set up a facility and dissect and sell or lease human bodies and body parts to anyone. The money that can be made by body brokers is significant and has led to bad actors taking advantage of the generosity of donor families by desecrating the bodies of their loved ones. We encourage Congress to pass the Consensual Donation and Research Integrity Act.”
The Consensual Donation and Research Integrity Act would provide the Secretary of Health and Human Services (HHS) with oversight of entities that deal with human bodies and non-transplantable body parts donated for education, research, and the advancement of medical, dental and mortuary science.
The bill, among other things, also requires non-transplant tissue banks be registered with HHS, gives HHS the authority to conduct inspections, requires informed consent when a donation is made, creates a clear chain of custody for each human body or body part; ensures shipments of human bodies and body parts are properly labeled and packaged; and ensures the respectful and proper disposition of donated bodies and body parts. Additionally, the Consensual Donation and Research Integrity Act establishes penalties for violations.
Background
The decision to donate a loved one’s body for scientific or medical research is an admirable choice and can offer healing to a grieving family. With whole body donation, bodies and body parts are used for education, research or the advancement of medical, dental or mortuary science. Researchers rely on donated human body parts to develop new surgical instruments, techniques, implants, medicines and treatments for diseases. Surgeons, paramedics and funeral directors use donated bodies and body parts for training, education and research and take great care to respect the tremendous gift of a donor cadaver.
While medical schools and state-run anatomy programs do not actively solicit donations, body brokers target the poor and elderly to donate their loved one’s body. Some medical schools have reported that competition from body brokers has reduced the number of bodies donated to schools to train students and conduct research because some brokers can offer donors more favorable terms, such as free removal of the body and cremation.
A patchwork of federal and state laws applies to body brokers. Under the Uniform Anatomical Gift Act, most state anatomical gift laws largely regulate just one side of the process – how a body may be donated. Most do not address what happens next, such as how brokers dissect, handle and ship the bodies and body parts; the prices they set on human remains; to whom they sell or resell them; how the parts are used by buyers; or the rights of donors and next-of-kin.
In almost every state, it is legal for anyone, even if they do not have training, to sell the human remains of adults. Generally, a broker can sell a donated human body for about $5,000, though prices sometimes top $10,000. Bodies and body parts can be bought, sold and leased, again and again. As a result, it can be difficult to track what becomes of donors’ bodies, ensure they are handled with dignity, and returned to their loved ones after cremation.
Fewer rules mean fewer consequences when bodies are mistreated and, when donor bodies are mistreated, the impact on surviving family members can be heartbreaking.
“We have heard upsetting stories from families that believed they were doing a good thing when they donated a loved one’s body for medical research,” said NFDA CEO Christine Pepper, CAE. “They truly believed the donation would create a positive legacy. However, the shocking actions of body brokers have only caused further grief. We strongly urge Congress to pass the Consensual Donation and Research Integrity Act and provide long-overdue accountability and transparency to the whole-body donation process and ensure donors’ bodies are treated with dignity and respect at all times.”
For more information about the Consensual Donation and Research Integrity Act, visit www.nfda.org/bodybrokerbill.