Sarah Gray views data about the use of her deceased son Thomas' retinal tissue in research for retinoblastoma, a cancer of the eye, at the University of Pennsylvania, while her son Callum looks on.
The twin boys growing within her womb filled Sarah Gray with both awe and dread. The sonogram showed that one, Callum, seemed to be the healthy child she and husband Ross had long sought; the other, Thomas, had anencephaly, a fatal developmental disorder of the skull and brain that likely would limit his life to hours. The options were to carry the boys to term or terminate both.
The decision to donate Thomas' tissue to research comforted Sarah. It brought a sense of purpose and meaning to her son's anticipated few breaths.
Sarah learned that researchers prize tissue as essential to better understanding and eventually treating the rare disorder that afflicted her son. And that other tissue from the developing infant might prove useful for transplant or basic research.
Animal models have been useful in figuring out some of the basics of genetics and how the body responds to disease. But a mouse is not a man. The new tools of precision medicine that measure gene expression, proteins and metabolites – the various chemical products and signals that fluctuate in health and illness – are most relevant when studying human tissue directly rather than in animals.
The decision to donate Thomas' tissue to research comforted Sarah. It brought a sense of purpose and meaning to her son's anticipated few breaths.
Thomas Gray
(Photo credit: Mark Walpole)
Later Sarah would track down where some of the donated tissues had been sent and how they were being used. It was a rare initiative that just may spark a new kind of relationship between donor families and researchers who use human tissue.
Organ donation for transplant gets all the attention. That process is simple, direct, life saving, the stories are easy to understand and play out regularly in the media. Reimbursement fully covers costs.
Tissue donation for research is murkier. Seldom is there a direct one-to-one correlation between individual donation and discovery; often hundreds, sometimes thousands of samples are needed to tease out the basic mechanisms of a disease, even more to develop a treatment or cure. The research process can be agonizingly slow. And somebody has to pay for collecting, processing, and getting donations into the hands of appropriate researchers. That story rarely is told, so most people are not even aware it is possible, let alone vital to research.
Gray set out on a quest to follow where Thomas' tissue had gone and how it was being used to advance research and care.
The dichotomy between transplant and research became real for Sarah several months after the birth of her twins, and Thomas' brief life, at a meeting for families of transplant donors. Many of the participants had found closure to their grieving through contact with grateful recipients of a heart, liver, or kidney who had gained a new lease on life. But there was no similar process for those who donated for research. Sarah felt a bit, well, jealous. She wanted that type of connection too.
Gray set out on a quest to follow where Thomas' tissue had gone and how it was being used to advance research and care. Those encounters were as novel for the researchers as they were for Sarah. The experience turned her into an advocate for public education and financial and operational changes to put tissue donation for research on par with donations for transplant.
Thomas' retina had been collected and processed by the National Disease Research Interchange (NDRI), a nonprofit that performs such services for researchers on a cost recovery basis with support from the National Institutes of Health. The tissue was passed on to Arupa Ganguly, who is studying retinoblastoma, a cancer of the eye, at the University of Pennsylvania.
Ganguly was surprised and apprehensive months later when NDRI emailed her saying the mother of donated tissue wanted to learn more about how the retina was being used. That was unusual because research donations generally are anonymous.
The geneticist waited a day or two, then wrote an explanation of her work and forwarded it back through NDRI. Soon the researcher and mother were talking by phone and Sarah would visit the lab. Even then, Ganguly felt very uncomfortable. "Something very bad happened to your son Thomas but it was a benefit for me, so I'm feeling very bad," she told Sarah.
"And Sarah said, Arupa, you were the only ones who wanted his retinas. If you didn't request them, they would be buried in the ground. It gives me a sense of fulfillment to know that they were of some use," Ganguly recalls. And her apprehension melted away. The two became friends and have visited several times.
Sarah Gray visits Dr. Arupa Ganguly at the University of Pennsylvania's Genetic Diagnostic Laboratory.
(Photo credit: Daniel Burke)
Reading Sarah Gray's story led Gregory Grossman to reach out to the young mother and to create Hope and Healing, a program that brings donors and researchers together. Grossman is director of research programs at Eversight, a large network of eye banks that stretches from the Midwest to the East Coast. It supplies tissue for transplant and ocular research.
"Research seems a cold and distant thing," Grossman says, "we need to educate the general public on the importance and need for tissue donations for research, which can help us better understand disease and find treatments."
"Our own internal culture needs to be shifted too," he adds. "Researchers and surgeons can forget that these are precious gifts, they're not a commodity, they're not manufactured. Without people's generosity this doesn't exist."
The initial Hope and Healing meetings between researchers and donor families have gone well and Grossman hopes to increase them to three a year with support from the Lions Club. He sees it as a crucial element in trying to reverse the decline in ocular donations even while research needs continue to grow.
What people hear about is "Tuskegee, Henrietta Lacks, they hear about the scandals, they don't hear about the good news. I would like to change that."
Since writing about her experience in the 2016 book "A Life Everlasting," Gray has come to believe that potential donor families, and even people who administer donation programs, often are unaware of the possibility of donating for research.
And roadblocks are common for those who seek to do so. Just like her, many families have had to be persistent in their quest to donate, and even educate their medical providers. But Sarah believes the internet is facilitating creation of a grassroots movement of empowered donors who are pushing procurement systems to be more responsive to their desires to donate for research. A lot of it comes through anecdote, stories, and people asking, if they have done it in Virginia, or Ohio, why can't we do it here?
Callum Gray and Dr. Arupa Ganguly hug during his family's visit to the lab.
(Photo credit: Daniel Burke)
Gray has spoken at medical and research facilities and at conferences. Some researchers are curious to have contact with the families of donors, but she believes the research system fosters the belief that "you don't want to open that can of worms." And lurking in the background may be a fear of liability issues somehow arising.
"I believe that 99 percent of what happens in research is very positive, and those stories would come out if the connections could be made," says Sarah Gray. But what they hear about is "Tuskegee, Henrietta Lacks, they hear about the scandals, they don't hear about the good news. I would like to change that."
Rodney Gorham, an Australian living with ALS, has reconnected with the world, thanks to a brain-machine interface called the Stentrode.
The brain-computer interface enabling this feat is called the Stentrode. It's the brainchild of Synchron, a company backed by Amazon’s Jeff Bezos and Microsoft cofounder Bill Gates. After Gorham’s neurologist recommended that he try it, he became one of the first volunteers to have an 8mm stent, laced with small electrodes, implanted into his jugular vein and guided by a surgeon into a blood vessel near the part of his brain that controls movement.
After arriving at their destination, these tiny sensors can detect neural activity. They relay these messages through a small receiver implanted under the skin to a computer, which then translates the information into words. This minimally invasive surgery takes a day and is painless, according to Gorham. Recovery time is typically short, about two days.
When a paralyzed patient thinks about trying to move their arms or legs, the motor cortex will fire patterns that are specific to the patient’s thoughts.
When a paralyzed patient such as Gorham thinks about trying to move their arms or legs, the motor cortex will fire patterns that are specific to the patient’s thoughts. This pattern is detected by the Stentrode and relayed to a computer that learns to associate this pattern with the patient’s physical movements. The computer recognizes thoughts about kicking, making a fist and other movements as signals for clicking a mouse or pushing certain letters on a keyboard. An additional eye-tracking device controls the movement of the computer cursor.
The process works on a letter by letter basis. That’s why longer and more nuanced responses often involve some trial and error. “I have been using this for about two years, and I enjoy the sessions,” Gorham typed during our chat session. Zafar Faraz, field clinical engineer at Synchron, sat next to Gorham, providing help when required. Gorham had suffered without internet access, but now he looks forward to surfing the web and playing video games.
Gorham, age 63, has been enjoying Stentrode sessions for about two years.
Rodeny Dekker
The BCI revolution
In the summer of 2021, Synchron became the first company to receive the FDA’s Investigational Device Exemption, which allows research trials on the Stentrode in human patients. This past summer, the company, together with scientists from Icahn School of Medicine at Mount Sinai and the Neurology and Neurosurgery Department at Utrecht University, published a paper offering a framework for how to develop BCIs for patients with severe paralysis – those who can't use their upper limbs to type or use digital devices.
Three months ago, Synchron announced the enrollment of six patients in a study called COMMAND based in the U.S. The company will seek approval next year from the FDA to make the Stentrode available for sale commercially. Meanwhile, other companies are making progress in the field of BCIs. In August, Neuralink announced a $280 million financing round, the biggest fundraiser yet in the field. Last December, Synchron announced a $75 million financing round. “One thing I can promise you, in five years from now, we’re not going to be where we are today. We're going to be in a very different place,” says Elad I. Levy, professor of neurosurgery and radiology at State University of New York in Buffalo.
The risk of hacking exists, always. Cybercriminals, for example, might steal sensitive personal data for financial reasons, blackmailing, or to spread malware to other connected devices while extremist groups could potentially hack BCIs to manipulate individuals into supporting their causes or carrying out actions on their behalf.
“The prospect of bestowing individuals with paralysis a renewed avenue for communication and motor functionality is a step forward in neurotech,” says Hayley Nelson, a neuroscientist and founder of The Academy of Cognitive and Behavioral Neuroscience. “It is an exciting breakthrough in a world of devastating, scary diseases,” says Neil McArthur, a professor of philosophy and director of the Centre for Professional and Applied Ethics at the University of Manitoba. “To connect with the world when you are trapped inside your body is incredible.”
While the benefits for the paraplegic community are promising, the Stentrode’s long-term effectiveness and overall impact needs more research on safety. “Potential risks like inflammation, damage to neural tissue, or unexpected shifts in synaptic transmission due to the implant warrant thorough exploration,” Nelson says.
There are also concens about data privacy concerns and the policies of companies to safeguard information processed through BCIs. “Often, Big Tech is ahead of the regulators because the latter didn’t envisage such a turn of events...and companies take advantage of the lack of legal framework to push forward,” McArthur says. Hacking is another risk. Cybercriminals could steal sensitive personal data for financial reasons, blackmailing, or to spread malware to other connected devices. Extremist groups could potentially hack BCIs to manipulate individuals into supporting their causes or carrying out actions on their behalf.
“We have to protect patient identity, patient safety and patient integrity,” Levy says. “In the same way that we protect our phones or computers from hackers, we have to stay ahead with anti-hacking software.” Even so, Levy thinks the anticipated benefits for the quadriplegic community outweigh the potential risks. “We are on the precipice of an amazing technology. In the future, we would be able to connect patients to peripheral devices that enhance their quality of life.”
In the near future, the Stentrode could enable patients to use the Stentrode to activate their wheelchairs, iPods or voice modulators. Synchron's focus is on using its BCI to help patients with significant mobility restrictions—not to enhance the lives of healthy people without any illnesses. Levy says we are not prepared for the implications of endowing people with superpowers.
I wondered what Gorham thought about that. “Pardon my question, but do you feel like you have sort of transcended human nature, being the first in a big line of cybernetic people doing marvelous things with their mind only?” was my last question to Gorham.
A slight smile formed on his lips. In less than a minute, he typed: “I do a little.”
XPRIZE founder and chairman Peter Diamandis launches XPRIZE Healthspan at an event on November 29.
In this competition, called XPRIZE Healthspan, multiple awards are available, depending on what’s achieved, with support from the nonprofit Hevolution Foundation and Chip Wilson, the founder of Lululemon and nonprofit SOLVE FSHD. The biggest prize, $81 million, is for improvements in cognition, muscle and immunity by 20 years. An improvement of 15 years will net $71 million, and 10 years will net $61 million.
In our conversation for this episode, Peter talks about his plans for XPRIZE Healthspan and why exponential technologies make the current era - even with all of its challenges - the most exciting time in human history. We discuss the best mental outlook that supports a person in becoming truly innovative, as well as the downsides of too much risk aversion. We talk about how to overcome the negativity bias in ourselves and in mainstream media, how Peter has shifted his own mindset to become more positive over the years, how to inspire a culture of innovation, Peter’s personal recommendations for lifestyle strategies to live longer and healthier, the innovations we can expect in various fields by 2030, the future of education and the importance of democratizing tech and innovation.
In addition to Peter’s pioneering leadership of XPRIZE, he is also the Executive Founder of Singularity University. In 2014, he was named by Fortune as one of the “World’s 50 Greatest Leaders.” As an entrepreneur, he’s started over 25 companies in the areas of health-tech, space, venture capital and education. He’s Co-founder and Vice-Chairman of two public companies, Celularity and Vaxxinity, plus being Co-founder & Chairman of Fountain Life, a fully-integrated platform delivering predictive, preventative, personalized and data-driven health. He also serves as Co-founder of BOLD Capital Partners, a venture fund with a half-billion dollars under management being invested in exponential technologies and longevity companies. Peter is a New York Times Bestselling author of four books, noted during our conversation and in the show notes of this episode. He has degrees in molecular genetics and aerospace engineering from MIT and holds an M.D. from Harvard Medical School.
Show links
- Peter Diamandis bio
- New XPRIZE Healthspan
- Peter Diamandis books
- 27 XPRIZE competitions and counting
- Life Force by Peter Diamandis and Tony Robbins
- Peter Diamandis Twitter
- Longevity Insider newsletter – AI identifies the news
- Peter Diamandis Longevity Handbook
- Hevolution funding for longevity
XPRIZE Founder Peter Diamandis speaks with Mehmoud Khan, CEO of Hevolution Foundation, at the launch of XPRIZE Healthspan.
Hevolution Foundation