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HomeHealth & FitnessDignity for the Deceased: The Need for Federal Regulations

Dignity for the Deceased: The Need for Federal Regulations

Champney is a professor of cell biology, and a body donor program coordinator.

A faculty colleague at another institution contacted me to let me know that his mother had donated her body to our body donation program. I replied that we would take care of her and treat her with the respect and dignity she deserved for willingly and altruistically donating her body for medical education — a priceless gift. She would be our guest for about 2 years. The year we returned her ashes to her family, we had a memorial service (“Rose Ceremony”) for our donors. My faculty colleague and his siblings came to the ceremony to remember their mother and found it to be a meaningful way to honor their mother’s gift.

This is how body donation should occur: with respect and dignity for the donor and with transparency and ethical oversight for the program. Sadly, this is not the case with all U.S. body donation programs.

The Need for Federal Regulations for Body Donation Programs

The recent news that an employee in Harvard University’s body donation program was indicted for selling body parts from those who altruistically donated their bodies was disturbing and abhorrent. It was not, however, surprising. There have been sporadic cases of this type in recent years; this was just one of the more high-profile cases. When these reprehensible actions occur, it highlights how few state and federal laws exist that specifically regulate body donation programs.

In the U.S., there are numerous federal legal protections for living humans, including the right to privacy (HIPAA) and the right to autonomy in research (Human Research Protection Program), just to name a couple. However, once an individual dies, the majority of these protections are lost. A deceased individual has few rights under current federal law and, in many cases, the treatment of these individuals falls under property law.

On the other hand, the federal regulations for the use of human organs for transplantation are quite detailed. They include the prohibition of for-profit transplant programs, the illegality of buying or selling of human organs, and oversight by the Public Health Service. Yet, no similar federal regulations exist for other uses of donated deceased humans. Organizations that procure human bodies for non-transplant use (referred to as non-transplant anatomical donation organizations [NADOs] or non-transplant tissue banks) are not required to follow any specific federal regulations, although they may seek certification from the American Association of Tissue Banks. They are also required to follow rules established by the Uniform Anatomical Gift Act (UAGA). The UAGA was established as a mechanism for states to have uniform state laws regarding organ donation for transplant and whole-body donation for education and research (non-transplant anatomical gifts). But even the UAGA has few specifics about whole body donation and little enforcement capability. No one, to my knowledge, has ever been indicted or found guilty of breaking laws associated with the non-transplant anatomical gift portions of the UAGA.

What Type of Federal Regulations Should Be Enacted?

A lack of federal regulation for protection of the deceased, along with the ability to financially profit from selling human body parts, has led to the establishment of businesses and distributors that operate in a legally gray area of for-profit body sales (for-profit body brokers) as well as individuals who buy and sell human remains in the “oddity market.” This lack of laws coupled with financial incentives has led to unethical behaviors in the use and handling of these individuals. For example, the recent incidents at Harvard University’s body donation program and at Sunset Mesa Funeral Home, as well as older incidents as far back as 19th century grave robbing, demonstrate the profit potential of the sale of human remains.

To prevent further abuses of this type, we need fundamental federal regulations for the care and handling of the deceased for use in research and education. In developing these regulations, the government could consult the American Association for Anatomy (AAA) and its Human Body Donation Committee, along with university body donation programs and state anatomical boards. Any regulations developed should be enforced in the same manner as the organ transplant regulations. These proposed regulations should set the foundation for the proper and respectful treatment of the deceased; they should protect their privacy and dignity.

The basic regulations for these programs should include the protection of donor privacy, the full and detailed informed consent of the donors, a traceable inventory of the donors to their final disposition, the lack of profit generation (revenue neutral), and a transparent and public set of policies and procedures. These should be fundamental regulations that all body donation programs would be required by law to follow.

To encourage further ethical oversight and proper respect for the donors, a certification process for body donation programs could also be established. This certification process could be organized and run by a national organization, such as the AAA. It could also include levels of certification that provide additional details on programs that meet the regulated standards as well as those that exceed these regulations in the transparent, ethical, respectful, and dignified treatment of the donors.

What Can You Do to Provide Dignity to the Deceased?

You can move this process along by first educating yourselves, your family members, and your colleagues. Secondly, consider what you would like to have done with your earthly remains and make these wishes known to loved ones. If you consider body donation, think of it as a major life decision and contact your local body donation program with questions. You should feel comfortable with all aspects of the program and your decision. Finally, you can contact your federal representatives and inform them that treating the deceased with respect is important and should be codified into federal law.

As a healthcare professional, you can educate your patients about the value of being an organ donor and a body donor. These are separate and distinct processes. Just because you are a registered organ donor, it does not mean you are also registered as a body donor. For those who do register as both types of donors, organ donation takes precedence. Please encourage your patients to seek out more information on these valuable and altruistic options.

Moral philosophers and legal scholars have explored why the treatment of the dead is important. They have suggested that how we treat the dead is morally indicative of how we treat the living. It is high time that our federal laws live up to our moral and ethical views about the proper treatment of those who lived, loved, and contemplated the beauty of the world.

Thomas H. Champney, PhD, is a professor of cell biology at the University of Miami Miller School of Medicine. He helps coordinate the South Florida Body Donor Program for the Anatomical Board of the State of Florida and is a member of the Institute of Bioethics and Health Policy at the University of Miami.

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