A new program in California offers terminally ill patients the chance to donate their bodies to medical research while still alive. These patients are contributing to the development of safer drugs for curing human diseases while helping to reduce the use of animals in research and adding meaning to their last days.
SINGAPORE – At the University of California, San Diego (UCSD), a program called Last Gift offers terminally ill patients the opportunity to help create more effective treatments. Their special circumstances transform the usual risk-benefit calculus of joining a clinical study of an untested drug. Researchers can ask them to consider consenting to being research participants in ways that they would not ask healthier people with long life expectancies, and terminally ill patients may choose to give that consent when others would be less likely to do so.
The leading United States research agencies, the Food and Drug Administration and the National Institutes of Healthhave recently issued strong statements about moving away from testing drugs on animals. The results from such tests, they now acknowledge, do not translate well into findings relevant to humans. Terminally ill patients can offer their own bodies to contribute to this growing effort to make drug testing more human-relevant, generating data on how people, rather than beagles or mice, respond to new treatments, while also reducing the suffering currently inflicted on laboratory animals.
Before launching Last Gift, researchers at UCSD surveyed nearly 500 people about end-of-life medical research. More than half said they would be willing to give up four weeks of their life to participate in research even if they had only six months to live.
Over a third said that if they had a terminal illness, they would agree to being exposed to pathogens, such as streptococcus bacteria, hepatitis C virus, and malaria, to help develop new treatments and vaccines. Individuals receiving hospice care also expressed a desire to “give back”. For many, the idea of contributing to science brought a deeper sense of meaning to their lives.
Currently, the Last Gift program is focused on understanding where HIV hides. Participants in this study are infected with HIV as well as being terminally ill. They don’t just donate their bodies for research to be conducted after their death; they also participate in invasive procedures while still alive, including biopsies, spinal taps, and blood draws.
Davey Smith, the lead investigator for the Last Gift study at UCSD, says, “It is incredible how much our study participants want to give of their time, energy, and literal body to science. They are pushing hard for us to do more, faster.” For the next phase of the program, Smith and colleagues are developing ethically and scientifically sound approaches to testing treatments and vaccines in Last Gift participants. Smith understands the great advantage that testing drugs in humans has over testing drugs in nonhuman animals: “Our physiology is just different,” he says, “Thousands of drugs found promising in animals have failed in humans.”
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The research does not need to be in an area related to the participant’s illness. For example, a person with advanced cancer might volunteer for a trial of a vaccine for an infectious viral disease. The trial will involve deliberate exposure to the virus, to test whether the vaccine offers protection.
It isn’t difficult to imagine a program that offers people with limited life expectancy a choice of ongoing research projects that they can participate in, thus leaving it up to participants to decide which diseases or medical conditions matter most to them. Offering that choice restores agency to people near the end of life and actively integrates them into a broader human effort to improve human health.
In May 2023, Richard Scolyer, an Australian melanoma specialist, was diagnosed with glioblastoma, an aggressive brain tumor. Patients with glioblastoma typically have a limited lifespan.
Scolyer, who had played a key role in driving the astonishing recent improvements in survival rates for patients with advanced melanoma, chose to become “patient zero” in an experimental immunotherapy trial, using a treatment proven in melanoma but never before tested in glioblastoma. “The data that we’ve generated,” he said“I know it’s changing the field, and if I die tomorrow with that, I’m very proud.”
One doesn’t have to be a researcher to make an important difference to medical research. Many patients could contribute to the development of safer drugs for curing human diseases while helping to reduce the use of animals in research. Productive medical research partnerships with the dying can save human lives, and at the same time add meaning to the last days of terminally ill patients. Initiatives like Last Gift have the potential to benefit all sentient beings – humans and animals.
