Consensual Donation and Research Integrity Act would protect the dignity of donors and offer peace of mind to families
Brookfield, Wis. — When a family chooses to donate a loved one’s body for education or research, they do so with the hope that they will help others. Regrettably, many are unknowingly contributing to a for-profit industry in which the body of their loved one could be traded as raw material in a largely unregulated national market. With the introduction of the Consensual Donation and Research Integrity Act of 2021 (CDRI Act) in the House (H.R. 4062), which has the full support of the National Funeral Directors Association (NFDA), Congress is taking a significant step toward protecting the dignity of donors and offering peace of mind to families.
“We have heard heartbreaking stories from families that believed they were doing a good thing when they donated a loved one’s body for medical research,” said NFDA President R. Bryant Hightower Jr., CFSP. “They truly believed the donation would create a positive legacy. However, the repugnant actions of body brokers have only caused further grief. From bodies being dismembered with chainsaws to families receiving sand instead of their loved one’s cremated remains – it’s one devastating story after another. We strongly urge the House to pass the CDRI 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.”
When a family donates a loved one’s organs or tissues for transplantation, the process is transparent and tightly regulated and families have the ability to specify which organs they wish to donate and can opt for an open-casket funeral.
Non-transplant tissue banks, which accept whole body donations, however, are not covered by the same laws that cover organ and tissue transplantation. There is little federal or state oversight and almost anyone, regardless of expertise, can dissect and sell or lease human bodies and body parts, generating substantial profits.
The CDRI Act, introduced by Reps. Bobby Rush (D-IL) and Gus Bilirakis (R-FL), would transform the landscape by providing the Secretary of Health and Human Services 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; registered members of the Organ Procurement and Transplantation Network, which are already strictly regulated, would be exempt.
The bill also, among other things, 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 CDRI Act establishes penalties for violations.
“This important legislation provides safeguards to ensure that human remains are disposed of in a manner that preserves the dignity and choices of the patient or next of kin,” said Bilirakis. “The industry has been largely unregulated and sadly many families have been exploited for profit. Our bill gives family members the peace of mind of knowing that their wishes are being honored.”
“As grotesque and shocking abuses of donor bodies abound, and grief-stricken family members are taken advantage of by unscrupulous body brokers, the need for federal regulation of this process could not be more clear,” said Rush. “The Consensual Donation and Research Integrity Act will ensure that individuals and families who make the selfless decision to advance scientific research can be certain that their remains, or the remains of their loved ones, will be treated with the utmost dignity and respect.”
“The tragic headlines about body brokers taking advantage of the generosity of donors and donor families by barbarically dismembering bodies and selling and reselling body parts at a substantial profit are shocking,” said Hightower. “We are grateful to Reps. Rush and Bilirakis for introducing the CDRI Act and call on Congress to prevent families from enduring the heartache that far too many have already endured by passing it.”
“The heinous acts committed by body brokers have deeply impacted the families I serve in my home state of Arizona,” said NFDA member Hillary Adair of Williams, Arizona. “The anguish body brokers have caused must be stopped. I am proud that NFDA is taking on this important issue and ask my fellow members to join me in fighting for the dignity of those we serve. NFDA will be giving us the tools we need to reach out and lobby our members of Congress. With your help, we can get the CDRI Act passed.”
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.
While universities and state-run anatomy programs do not actively solicit donations, body brokers often 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 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’s legal 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.
NFDA is the world’s leading and largest funeral service association, serving more than 20,000 individual members who represent nearly 11,000 funeral homes in the United States and 49 countries around the world. NFDA is the trusted leader, beacon for ethics and the strongest advocate for the profession. NFDA is the association of choice because it offers funeral professionals comprehensive educational resources, tools to manage successful businesses, guidance to become pillars in their communities and the expertise to foster future generations of funeral professionals. NFDA is headquartered in Brookfield, Wis., and has an office in Washington, D.C. For more information, visit www.nfda.org.