Mark McAllister is a twenty-year-old man with Spinal Muscular Atrophy (SMA), a rare condition that causes the degeneration of motor neurons and the weakening and wasting away of muscle. In a wheelchair since age 3, McAllister is fighting the inevitability of his death: victims of SMA do not live much past 30 years of age. His fight is as epic as any told in human literature, but as personal as the questions each of us ask about the nature of our existence.There are the usual hopes for a medical breakthrough that will spare McAllister further deterioration in health. The effectiveness of using valproic acid and carnitine to treat SMA in children is currently in phase II clinical trial. “The results of the study won’t come for a while yet,” says McAllister, “but it looks more like a treatment than an actual cure.” Research into other genetic diseases and human genome research in general also provide promising avenues to discoveries that might have some bearing on SMA.

The question is, will treatments become available soon enough to extend McAllister’s life just a little bit longer, leading up to that wonderful day when SMA is cured forever? The prospects are improving, but McAllister understands the reality. “The push for a cure waxes and wanes depending on the funding available at the time.”

At age 16, McAllister learned just how fast his physical abilities could deteriorate. “I’ve always been in a wheelchair, but up to that point I had adequate use of both my arms, At this time, however, my left arm began weakening. The degeneration was alarming, and within a year and a half I had completely lost the use of that arm. This was the first event in a series that would ultimately leave me frailer than I had been before. It was at this time that my mortality became very apparent to me.”

Humans, regardless of their preexisting conditions, face a period near the end of their life when their body rapidly begins to fail them. Though it might seem a lot worse to live only 30 years with already limited physical abilities before dying, to some people of reasonable health, death at any age is a horrifying prospect.

McAllister discovered people with this view of death while exploring the philosophy of transhumanism. Horror of the finality of death has lead some to embrace this philosophy and its exploration of alternatives to oblivion or a supernatural afterlife. While a majority of people continue to believe that death is simply a natural part of a larger cycle involving birth and existence, transhumanists hope to overturn such thinking by showing that humans can, through science and technology, obtain physical immortality.

McAllister provides reasons why physical immortality could be positive. “First off, we live in a fast paced society that focuses on immediate gratification. This doesn’t provide a person much of a chance to explore their potential. In a world inhabited by immortals, we could see the rebirth of the ‘Renaissance Man’, with individuals mastering several disciplines. Second, immortality provides for the best chance at societal growth. For all intents and purposes we hit the reboot button with each generation. Sure, society does evolve over time, but every generation basically starts with a blank slate. Image what would happen if we had leaders with centuries of wisdom and experience. Society would grow,learning from mistakes experienced on its own instead of learning from history texts.”

Recent scientific research indicates we might be heading rapidly toward just such a world. Unfortunately, for many with preexisting conditions, this progress might not come soon enough. The plight of actor Christopher Reeve, who suffered an accident that left him without the use of his body below his neck and who became an outspoken advocate for cutting-edge medical research, comes immediately to mind. He remained hopeful for a breakthrough within his lifetime, but he did not live to see the announcement by South Korean scientists late last year that they had used adult stem cells to allow Hwang Mi-Soon at 37 years of age to walk again after 20 years of paralysis.

What does one do when future treatments and cures are tantalizing out of reach and every day is a race against time? To transhumanists and other technology progressives, cryonics offers one possible solution. Cryonics is a speculative technology used to freeze or vitrify the human body after clinical death for indefinite storage. If the body can be vitrified soon after death - thereby halting or slowing down significantly the process of decay - then maybe it can be held in indefinite stasis until future technology has progressed far enough to cure, repair and revive the individual. Although those few people who have paid for cryonics plans generally agree that the chance of their resurrection is low, they feel it is a fair gamble. After all, once they are clinically dead, they have nothing else to lose, and everything to gain should their slim hopes be realized.

Alcor and the Cryonics Institute, the two primary facilities for cryonics in this country, allow members to use a life insurance policy as payment, along with annual fees. Upon clinical death, the member’s insurance policy is signed over to the cryonics facility. For many people, this is their only option, as full-body internment at cryonics containment facilities can cost as much as US$100,000, before annual fees are added in. A neuropreservation plan that retain only the head and brain still costs up to US$80,000.

Some people cannot get enough insurance to cover the cost of cryonics preservation. McAllister is an example, a person with a preexisting condition not covered by most life insurance plans. Any life insurance policy he might qualify for will come with particular limitations and may not be large enough in value to cover the cryonics costs. Without a life insurance policy of sufficient value, McAllister must raise the money to pay for this service upfront.

Enter the 2.0 Project.

Conceived by McAllister while reflecting on his options after not winning a lottery, the 2.0 Project serves dual purposes. The first is to raise enough money to let McAllister sign up for a cryonics plan, and the other is to raise awareness about transhumanism, physical immortality, and the plight of the uninsured and uninsurable in a world of rapid life extension. McAllister argues that ultimately “the 2.0 project isn’t about me, it’s about life.”

The 2.0 Projects hopes to raise US$130,000 to cover Mark’s neuropreservation at Alcor as well as other expenses including the cost to move near their facility in Scottsdale, Arizona, USA, from his current residence in Canada, and living and medical care costs should Mark’s health take a drastic turn for the worst. To date, with a mix of donations and McAllister’s own personal financial contributions, the 2.0 Project has raised US$443.06 on word of mouth alone.

McAllister is also trying to build a team of graphic, industrial, environment, interior and other designers and artists to help turn the 2.0 Project into “a giant communications project.” McAllister’s own work in graphic design has been supported by the use of technology to augment physical abilities limited by SMA. “Computers have been a blessing for me,” he explains, “and I wouldn’t be in this line of work without them. My drawing skills can be a bit sketchy (no pun intended) at times, but I still have enough strength in my right arm to carry out my job.” Knowing through his work the potential impact of design on society, politics and individuals, McAllister and his team will create a visual language for disseminating and leading discussion about technology progressive ideas.

Because the 2.0 Project is informed by transhumanism, it faces its own obstacle of image. There is already a growing backlash against technology progressive philosophies, led by some of the leading bioethicists in the United States, in addition to religious and conservative interests. When Foreign Policy asked invited writers in its September-October 2004 issue what they believed the world’s most dangerous ideas were, Francis Fukuyama, a member of The President’s Council on Bioethics, Professor of International Political Economy at Johns Hopkins University’s Paul H. Nitze School of Advanced International Studies, and author of several books critical of future progress, responded that it was transhumanism. The coming transformation of modern humans into transhumans with enhanced abilities enabled by science and technology led Fukuyama to wonder “what rights will these enhanced creatures claim, and what rights will they possess when compared to those left behind?”

When asked about possible criticism leveled at the 2.0 Project, McAllister states that “[d]eath is a major concern for everyone on this planet, whether they like to admit it or not. Every world religion has come up with its own answer to death. In fact, I believe that at the core of all religious belief lies the fear of death. So really, seeking immortality through science is no different than seeking it through spiritual means. The only hitch is when people can’t see past their own paradigm. I understand those who would feel adversely towards the 2.0 Project, and I respect their viewpoint. It’s impossible to get everyone to agree on something (especially the concept of death), so room must be made for different beliefs and opinions.”

The pursuit of immortality through supernatural and mystical means, our myths of eternal human-like gods, the latest diet craze, Botox - each is another way that humans try to hold on to their existence just a little bit longer, a desire that is at least as old as recorded human history. But the idea that there is no set limit to human lifespan is as new as the breakthroughs being reported in the scientific literature on a nearly daily basis. Biology tells no lies, but it tells a difficult truth. With each result, we are forced to rethink what we thought we knew about our existence and destiny.

When the research stopped being speculative and began to produce measurable results, critics that had previously called the entire endeavor “science fiction” and a waste of time and money immediately began calling for limits and outright bans, culminating with suggestion by Leon Kass, another member of the President’s Council on Bioethics, and others that people who live too long might need to be euthanized for the sake of society, regardless of their level of health. A rapidly growing population of centenarians, many of them now in their eleventh decade, might argue otherwise.

Through the 2.0 Project, McAllister hopes to encourage further discussion about these issues within the transhumanist movement and beyond. He says that he does “consider myself a transhumanist, but I use futurist to describe myself just as often. I’m not one who cares much for labels, and futurist is a bit more generalistic. I do, however, use transhumanist on the website for the simple fact that I consider myself a transhuman. I’m an individual in transition, whose ultimate goal is posthumanity (whatever that turns out to be). Whatever form it may take in the coming years, I believe this to be the core of transhumanism. All other facets are negotiable.”

It is this human face on topics unfamiliar to most of the public and frightening to critics that may be the 2.0 Projects strongest asset. McAllister dreams find flight beyond a cure for SMA and a rejuvenated body. He envisions a bright future of possibilities available to everyone, regardless of their current status.

“Transhumanism is an optimistic philosophy. Likewise, the 2.0 Project is an optimistic mission. My philosophy is based largely around transhumanism, thus the project is based largely around transhumanism. I don’t want this to sound like it’s just for technophiles though. Above all else, the project is about life. I’m hoping that this will appeal to people of various philosophies.”

More Information

• The 2.0 Project
• Project Cure SMA

• Strategies for Engineered Negligible Senescence, Second Conference (SENS2)
• Queens’ College, Cambridge, England
• September 7-11, 2005

One of the top news stories about the future of medical technology making the rounds last week was based on a journal article now almost a year old. In the April 2004 issue of the Archives of Ophthalmology doctors reported on “The Artificial Silicon Retina Microchip for the Treatment of Vision Loss From Retinitis Pigmentosa.” These tiny chips contain about “5000 microelectrode-tipped microphotodiodes”, or solar collectors which send their signal to still-functioning retinal neurons. The six patients in the study, all suffering from retinitis pigmentosa, reported improved vision and no side effects, such as infection.

The prospect of silicon computer technology and human biological cells working together to correct and cure medical conditions was once dismissed as fantasy. This work, along with the many other threads of technology being tested successfully elsewhere, is proving just how adaptive biology can be.

According to the United States Centers for Disease Control and Prevention (CDC), heart disease and cancer are the two leading causes of death in the U.S., making up over half of the 2,443,387 deaths that occurred in 2002. Could the top two killers of Americans eventually be eradicated (along with many of the other leading causes of death)? There may be reason to be hopeful.

Medical researchers at the Karolinska Institute in Stockholm, Sweden have reported evidence that mice can be vaccinated against the build up of plaque in their arteries. Human trials of the vaccination could begin in two years, perhaps leading to a treatment for children that would vaccinate them from heart disease later in life. Such a treatment could theoretically have a lesser but still important effect in adults as well.

Meanwhile, the number of specific cancers targeted by new drugs has been rapidly increasing over the past couple years. Some of these drugs have shown incredible results early in human trials. Also, new treatments using technologies such as gene therapy and stem cell injection are showing great promise over a wide range of diseases.

Life expectancy is now at a record high and death rates are at a record low, due in large part to incredible advances in medicine. Human life expectancy may or may not be affected by the cures for various diseases, but it appears quality of life will be. For a daily dose of the latest research and breakthroughs with a life extension bent, check out the Betterhumans webzine.

Statistics Source:

Kochanek, Kenneth D., Murphy, Sherry L., Anderson, Robert N., and Scott, Chester. Division of Vital Statistics, National Center for Health Statistics, the Centers for Disease Control and Prevention. “Deaths: Final Data for 2002.” National Vital Statistics Reports 53.5 (12 Oct. 2004) ‹http://www.cdc.gov/nchs/data/nvsr/ nvsr53/nvsr53_05acc.pdf›.

CORRECTION posted Sunday, December 19, 2004: Dr. Aubrey de Grey, mentioned below, is not in fact a gerontologist. He is a computer scientist and research associate in the Department of Genetics with an interest in biogerontology. He and his ideas about life extension were recently profiled in a recent Popular Science article. The article also clears up any misunderstandings about his background.

Dr. Aubrey de Grey, a gerontologist at the University of Cambridge, has optimistically stated in a new essay that “I think the first person to live to 1,000 might be 60 already.” In his own essay, Dr. S. Jay Olshansky, a professor at the University of Illinois at Chicago dismisses the idea as more rhetoric from the “cult of immortality.” He lists similar promises throughout history that never led to greatly extended life.

Dr. Olshansky is missing a very important point. Dr. de Grey’s optimistic statement is based on science. Failed promises from the past have been based on religion or pseudoscience.

Galileo might have responded to life extension critics with “Eppure si muove” - yet still it moves. Led by hand washing and antibiotics, human life expectancy has doubled from 40 to 80 years since the end of the 19th century. Some experts believe that life expectancy will be capped at 120 years. However, this figure has been continuously pushed back by ongoing research into aging.

Interestingly, Dr. Olshansky hedges his bets at the end of his essay by stating “If we happen to live longer as a result [of improvements to "physical health and mental functioning"], then we should consider that a bonus.” Dr. de Grey writes about living to 1000 or longer while performing research to that end. His results will determine whether or not he is too optimistic. Criticism from those who dismiss life extension out of hand will not.

A compound called AMN107 has been found to cause remission in 86 percent of patients with chronic myeloid leukemia who do not respond to the other wonder drug Gleevec (in use since 2001). The human trial is only in Phase I (compound safety in humans) but the results have been so incredible that scientists have had difficulty keeping quiet about it.

AMN107 is only one example of many new and powerful treatments for various diseases. As a result of treating or curing diseases, we are faced with life extension. Some critics argue that curing diseases does not extend life, but how long would patients in this trial have lived without AMN107? Their lifespan has in fact been extended!

The Korean Times is reporting that a patient has regained the ability to walk after 19 years of paralysis following the injection of stem cells into the damaged portion of her spine. The apparent success was reported at a press conference held by researchers from Chosun University, Seoul National University and the Seoul Cord Blood Bank.

The researchers plan to officially submit their research to the scientific community early next year. If the research is confirmed, South Korea will be widely recognized as the world’s foremost center for stem cell research. A team of scientists in South Korea was one of the first to successfully clone a human embryo (the embryo was not implanted into a womb) and the country is already considered to be the most technologically advanced nation in the world.

The FDA has granted market approval for the VeriChip created by Applied Digital Solutions. This is a microchip that is implanted under human skin. The VeriChip holds a code that unlocks a patient’s medical data in a hospital database.

This chip is already being used to track the movement of pets, help track down government workers in Mexico should they be abducted, and speed up payment for drinks in a bar in Spain. As par for the course with new technology these days, the debate has already begun about potential privacy concerns and the ethics of merging humanity with technology.

There are those that strongly oppose such intimate use of technology in humans, those that advocate restrictions, and those that hope to use technology to transcend human weaknesses. Regardless, the accelerating rate of technological progress is beginning to outpace the debate. Perhaps it is too late to stop such technology, but not too late to start thinking about where you stand as an individual. Without such introspection, you may soon find upcoming life-altering decisions already made for you.

The Frontier Channel returns today from a remarkable new setting for observing the frontiers of science and technology: the University of Arizona in Tucson, Arizona. In addition to being one of the premier centers for planetary science research in the United States and home to the upcoming Phoenix mission to Mars, UA is home to ophthalmologist Jim Schwiegerling. Dr. Schwiegerling is currently at work on a new generation of corrective laser eye surgery that should result in vision enhancement superior to current human abilities, by the end of this decade.

Rather than simply treating or correcting human medical conditions and diseases, research is poised to bring to the public technology to enhance human abilities. Bionic ears that are superior to the best biological ears, corrective laser eye surgery that results in 20/10 or better vision, drugs that decrease our dependence on sleep, and life-extension compounds are just some of the technologies that are expected in the next five years to begin confusing our definition of what it means to be human.

Meanwhile, I will be working on degrees in Physics and Astronomy and may volunteer as a human guinea pig.

Researchers have reset malignant tumor cells into stem cells that were then used to create mouse embryos, some of which successfully grew into healthy adult mice, according to a new study “Reprogramming of a melanoma genome by nuclear transplantation” published in the August 1, 2004 edition of the journal Genes and Development. The stem cells derived from the tumor cells were found to have spread throughout most of the tissues in the mouse. When the genes for the cancer were turned back on the tumors developed more rapidly than in normal mice.

The finding appears to prove several things, such as:

• cancer can be “turned off” even though the specific genes involved cannot be corrected;
• mature cells, even those that are malignant, can be reverted into stem cells; and
• the body is capable of reversing cancer.

Despite this success, experimentation with human stem cells using federal funding is prohibited in the United States. The idea that stem cells from embryos are a commodity to be used in experimentation is repellent to those who do not hold a materialistic view of the universe. In the meantime, the people most likely to benefit from such research continue to suffer and die from cancer and other diseases.