It has become standard operating procedure that when you renew or obtain your driver’s license, you’re given the chance to sign on as an organ donor.

Statistically, just over 50% of drivers sign on that dotted line, helping put a dent in the list of more than 100,000 people awaiting organ transplantation at any given time. The process is strictly regulated by the federal government, and the parties involved follow a specific set of rules every step of the way.

There’s another type of donation that also serves to help others and advance science, although you can’t sign up for it at the DMV. Commonly known as body donation, this far-less regulated type of donation runs a bit under the radar. While its outcome is usually to a good end, potential donors and their families should understand what they’re signing up for when giving consent.

Unfortunately, with no federal oversight, the body donation market varies widely from state to state and from organization to organization. The result can be confusion, misunderstanding, and sometimes heartache for the families of loved ones whose bodies have been donated to science. The recent case of stolen heads in Denver, where police earlier this month said someone broke into a truck and stole a box labeled “exempt human specimen” that contained human heads used in research, only serves to illustrate the point.

“It’s a bit of a Wild West venture,” says Thomas H. Champney, PhD, a professor of cell biology at the University of Miami. “There can be a mom-and-pop business, with little oversight.”

That doesn’t mean body donation isn’t for a good cause or doesn’t lead to meaningful progress in the medical world. Body donors are making an impact on health care, says Angela McArthur, director of the Anatomy Bequest Program at the University of Minnesota.

“I want people to know we’re all the beneficiaries of this gift and that it’s a huge ask to part with a loved one’s body for research.,” she says.

Kim Ostrenko, a South Florida-based actress whose parents donated their bodies to the University of Miami Medical School when they died, remains comforted by the fact that their bodies are being used for good. “We need to train these young doctors, and if this can help, that’s a comfort,” she says. “It gives a sense of purpose to think that my parents are still contributing to society, even after death.”

All that said, it’s best to go into body donation armed with as much information as possible about the process.

Donor Beware

There was a large rise in body and tissue donation as the variety of surgical procedures in medicine evolved. Around 20 years or so ago, there became a growing need for human body donations for doctors and surgeons to use for practice.

“This led to a new line of body brokering businesses,” explains Champney. “Essentially, they find individuals close to death — or their loved ones — and share the idea of body donation. Grandma dies, for instance, and no one knows what to do with her body. These companies give options.”

The uses can even include continuing education for current health care workers.

“These are working professionals like paramedics, doctors, and nurses coming to hone their skills in an environment where the consequences aren’t as high as when practicing on a living human,” says McArthur.

All of which is well and good, but too often, there are gaps in understanding of what happens once the body is in the hands of a broker. For instance, you might think your entire body will be cremated after use and your ashes returned to your family. But too often, your family might receive only partial ashes, from one body part or another.

Ostrenko admits that even though she is happy with her parents’ decision, waiting for their remains was and is hard. “It took over a year to receive my father’s ashes,” she says, “and I still don’t have my mother’s, who passed away last year.”

Still, Ostrenko puts a positive spin on the wait. “We have a two-part ceremony,” she says. “A celebration of life, and then a scattering of the ashes when they are returned.”

Other issues include a lack of disclosure about how a body will be used. A broker might dismember the body, sending off one part to a medical school, and the other to a research institution. Sometimes, those parts are used over and over again. In some cases, companies — or even the military — use body parts for impact studies to ensure their products will protect as they’re designed to. “Body brokers need to list that in the consent so that people don’t feel abused,” says McArthur.

There’s also the fact that some brokers are making a nice profit from your body, once in their possession.

“It’s illegal to buy a body,” says Champney, “but they might be charging their end customers astronomical shipping costs, turning a profit.”

The body brokering business also has some unethical players who prey on low-income donors, promising cremation services in exchange for a body. They advertise at hospices, nursing homes, and even low-income senior housing.

The horror stories of unscrupulous brokers are just that — horrifying.

A widow from New Orleans followed her late husband’s wishes to donate his body to science. But instead of being use for research, his corpse was dissected in October in front of a live audience of people who paid up to $500 to attend an event called the Oddities & Curiosities Expo in Portland, OR.

In 2014, the FBI raided a for-profit company, Biological Resource Center, where agents found a macabre scene of mismatched limbs and other body parts that sounds like a scene from a low-rent horror film. The company had accepted private body donations with the promise that they would be used in scientific research.

While it can feel like a good deal, you should know what happens next with your or your loved one’s body.

Keep Your Eyes Open

If you or a loved one is considering body donation, you’ll want to pay attention to safeguards and red flags.

“When reading over the consent, look to make sure the use of the donation is listed and who the possible users will be,” says McArthur. “Also, have a spelled-out time frame for when your loved one’s remains will be cremated, and know whether or not the remains you receive back will be total body or partial body cremation.”

At the other end of the spectrum, be on the lookout for any concerns.

“If there’s a lack of disclosure on any of the items, be wary,” says McArthur. “If the documents are of poor quality — with typos, for instance — you’ll want to look at what’s going on behind closed doors.”

A simple Google search can be helpful, looking for negative or positive reviews of a business.

“Check into their profit status,” says McArthur. “If it’s for-profit, that’s fine, but they must disclose that.”

And McArthur suggests digging a little into how the organization handles donated bodies. They may be segmented, which can be standard practice, but you should know that going in.

“Look at blood testing for infectious diseases, preservation, disarticulation, and the like,” she says. “There should be full disclosure on what will happen to the body.”

There are fledgling efforts to more uniformly regulate the body donation industry on a federal level, but they have found tough footing.

“I’ve been pushing for 10 years for a real certification process so that brokers could say they meet certain standards or levels of standards, but it’s been hard to gain traction,” Champney says. “There has been some legislation introduced in Congress, too, but it didn’t get off the ground.”

If and when that day arrives, navigating the body donation process will be easier and more transparent. But until then, it’s best to proceed with a bit of skepticism and do your homework before committing. “Recognize that some states regulate better than others,” says McArthur, “and look for well-written, easy-to-understand contracts that disclose the important details you need.”

Sources:

Thomas H. Champney, PhD, professor of cell biology, University of Miami Miller School of Medicine.

Angela McArthur, director, Anatomy Bequest Program, University of Minnesota.

Kim Ostrenko.

The Guardian: “US widow horrified as husband’s body donated to science is dissected publicly.”

Time: “Dismembered Limbs, Head Sewn Onto the Wrong Body Allegedly Found in Raid on Arizona Body-Donation Company.”

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