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 (CDRI Act) (S. 4929) yesterday by Sens. Chris Murphy (D-CT) and Thom Tillis (R-NC), the Senate today took a significant step toward bringing meaningful change to the largely unregulated process of whole body donation.
Donating a loved one’s body for medical research upon their death – particularly if that individual dealt with health challenges – can help bring healing and comfort to a family, knowing that their gift may help advance scientific knowledge and discoveries. However, unscrupulous actors, sometimes known as “body brokers,” take advantage of this generosity and sell or lease bodies and body parts at a significant profit.
“It’s hard to imagine, in this day and age, that whole body donation isn’t regulated,” said National Funeral Directors Association (NFDA) President Randall P. “Randy” Anderson, CFSP, CCO. “What’s even harder to hear are the stories from families that have experienced heartbreak and grief when they discovered the bodies of their loved ones has been desecrated and sold – sometimes repeatedly – by body brokers. NFDA and its members strongly urge the Senate and House to pass the CDRI Act and provide long-overdue accountability and transparency to the whole-body donation process. This will help 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, which was introduced by Reps. Bobby Rush (D-IL) and Gus Bilirakis (R-FL) in the House last year (H.R. 4062), 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.
“The exploitation of bodies that have been donated for education or research is deeply disturbing and heartbreaking for the families who expect their loved one’s remains to be treated with dignity. For too long, an unregulated industry has allowed body brokers to profit off donor bodies and their grieving families, disproportionally impacting the poor and elderly. This legislation would increase accountability and transparency and stop bad actors from committing these gross abuses,” said Murphy.
“Most Americans would be shocked to learn that there is a for-profit body broker industry that creates significant ethical dilemmas and public health threats because of a lack of regulation,” said Tillis. “Our bipartisan legislation will introduce much-needed accountability and regulatory oversight to protect public health and ensure that donors and their families are treated with respect and dignity.”
“NFDA is grateful to Sens. Murphy and Tillis for introducing the CDRI Act in the Senate and call on both houses of Congress to prevent families from enduring the heartache that far too many have already endured by passing this bill,” said NFDA CEO Christine Pepper, CAE. “In doing so, we can put a stop to the anguish that far too many families have experienced at the hands of body brokers.”
“Nothing happens quickly in Washington, D.C., and the path toward getting this bill introduced in the Senate has been long,” said NFDA Senior Vice President of Advocacy Lesley Witter, MPA, CAE. “As with other legislation – like the BRAVE Act, which vastly improved death benefits for veterans – grassroots advocacy by NFDA members will help get the CDRI Act passed. This legislation will be a key focus of NFDA legislative agenda in the new Congress in January and at the 2023 Advocacy Summit.”
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.
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.
For more information about the CDRI Act, visit www.nfda.org/bodybrokerbill.
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.