“We Can Rebuild Him…”
Allow me to present to you two startling medical facts: Fact One: Despite 2.5 million deaths per year in the United States according to the CDC, there are over 120,000 people waiting for organ transplants across America.[i] The extreme dichotomy of these numbers emphasizes the primary point – there is a massive shortage of donated organs in the United States. Fact 2: Germ-line editing (GLE) is ripe with controversy – some deserved, some not. Congruent to this idea, there are some disorders, such as Werdnig-Hoffman disease, that somatic cell editing, or even Germ-line editing may not be able to fix. This is because the body simply does not have a highly detectable amount of SMN, a protein found in high amounts in motor neurons, which is responsible for muscle growth, sitting upright, and proper breathing.[ii][iii] And spinal muscular atrophy, of which Werdnig-Hoffman is the most severe type, is the leading hereditary cause of infant mortality in the world.[iv] What do these medical facts have in common? Nothing, aside from their philosophical and increasingly empirical solution – the ideas and applied principles found within the philosophy of Trans-Humanism. That is, the idea that tool-making and tool-using are a fundamental core of what it means to be human - individually, societally, and medically. This means that as human nature continues to produce shades of gray and nuance, so too must our tools. Although this essay is not designed to be critical of GLE, it will show how the philosophy and applied principles of Trans-Humanism absolutely play a vital role in answering questions regarding GLE, and organ demand and procurement in the United States.
What Are The Issues?
According to a November report by the United Network for Organ Sharing (UNOS), a group dedicated to advancing “organ availability and transplantation by uniting and supporting our communities for the benefit of patients through education, technology and policy development,” there are over 120,000 thousand people on organ transplant waitlists from all around the United States.[v][vi] Of those 120,000, close to 81% are waiting for kidneys, an organ which the human body has two of, and of which the human body can survive with only one. This is followed by the liver, of which a person can live with a smaller, donated portion. Unfortunately, despite the fact that the two biggest organ shortages are related to organs which, theoretically, are easier to donate because the pool for those organs is bigger (potential donors are alive, as well as deceased), and you only need one or only a portion, the fact remains that they constitute over 90% of the total amount of people on the waitlist.
In addition, raising the supply of viable organs is not a simple process, as it is not easy to convince people to donate. In America, there is an opt-in approach. This is where people who decide they want to be donors are able to register “in” at the website “organdonor.gov” and can do so by state.[vii] Despite the ease, however, there are many ethical considerations that both the doctor and potential donor, as well as the general public must be able to answer. It is unlikely that a significantly large amount of people are against donations, philosophically. However, with the lack of supply, philosophical questions must be asked and answered. For instance, should the United States adopt an opt-out approach, like many countries in Europe have? An opt-out system works with the idea that everyone is a potential donor, and upon your death, your organs are harvested for use in patients on organ donation waitlists, unless you have previously specified that you do not want to be a donor. On November 30, 2015, Wales became the first nation in the UK to start what they call “presumed consent,” meaning that if one does not want to donate, they have to specifically state so.[viii] Like the issue of organ donation by itself, this decision is not without controversy. For instance, what of people whose religion forbids them from donating used, personal, organs? Even without a religious component, what of conscientious objectors, people wary of a system that they believe sees people as a means to an end, who would rather harvest their organs than save their life? Or, perhaps more simply and more poignant to the discussion, what of paternalism vs autonomy? If there are truly such things as individuals, and individuals own their own bodies, should they not have the final say, regardless of any positive or negative outcomes?
To be clear, this portion of the essay is not intended to discourage organ donation, but rather to illustrate briefly controversial issues that stem from it. That said, the question must still be “How can we increase the supply of organs, while respecting people’s right to not donate if they wish?” This is where the rapidly advancing technology of 3D printed organs comes into play.
What Does This Look Like?
Dr. Gabor Forgacs is a scientist with the University of Missouri-Columbia, and a researcher for Organovo, a research institute dedicated to “changing the shape of medical research and practice.” And he - along with the general scientific community - believes that the time is close at hand where technology will literally be able to print organs, a process called “bio-printing.” Using a printer, they are able to release certain cells into an outgoing atmospheric gelatin. The cells then begin the replication process naturally, just as they would when the body forms. The cells divide, fuse, and divide again, creating more complex forms of tissue.[ix] A significant advantage to this method is the fact that the tissue that is grown is collected from your own organ’s cells, meaning there is no donation needed, and there is very little chance of rejection. “I think that what was science fiction fifty years ago is becoming a reality today,” says Dr. Forgacs. To be fair, printing a viable organ is still some years away. “This work is an important step in that direction by enabling us to use biological materials that we believe are necessary to do this. However, years of research are still required,” said Adam Feinberg, a biomedical engineer at Carnegie Mellon University, who has been working on similar technology[x]. One thing that makes Feinberg’s work especially important is the cost associated with the actual printing process. While the majority of such printers cost around $100,000 dollars, Feinberg’s printer costs less than $1,000.[xi] “Our vision is that other research groups can take this technology and apply it broadly to other tissue-engineering and soft-materials 3D-printing challenges," Feinberg said.[xii]
What Does This Mean?
First and foremost, this means a direct, positive impact on the availability of organs for those in need, in the near future. To be clear, bio-printing is still a few years away, at the earliest. Despite this, there is much to be hopeful for, given the speed at which technological innovations appear. But more than that, bio-printing avoids some of the ethical issues surrounding organ donation, such as creating a viable and sustainable method of increasing supply, while allowing people and donors to retain their autonomy.
What Are The Issues?
Germ-line editing and somatic cell editing are processes in which the DNA of stem-cells are modified. These modifications repair or replace entirely damaged portions of DNA. The primary difference between the two is the duration of the effect – Somatic cell editing affects only the person being treated with that form of gene therapy. Germ-line editing, however, is a kind of modification that can be passed on. The advantage to this form of genetic modification is, it is argued, the eventual eradication of genetic diseases – diseases like sickle cell anemia, cystic fibrosis, or down-syndrome. The argument appeals to a sense of finality in that a disease can be completely “erased,” literally, from our genetic code. Notwithstanding, there are many who believe in a future dominated by “Gattaca” like people – genetically modified, and “perfect,” while those unable to afford such procedures given the lowliest of jobs and lifestyles. “Should germ-line editing become a more common practice, moving from the realm of medicine to desire,” they say, “what’s to stop people from genetically altering away any perceived ‘imperfection,’ leaving the rest of poorer humanity in the dust?” While this critique subscribes to a social justice perspective of germ-line editing, there are other genetic diseases that simply cannot be treated with somatic cell editing, or even germ-line editing. Illnesses such as these require a different approach.
What Does It Look Like?
Dr. Sergio Canavero, of the Turin Advanced Neuromodulation Group (TANG) in Italy, will attempt within the next two years the world’s first, complete, head transplant. One of the first obstacles has already been overcome – a willing participant. Valery Spiridonov, a 30-year-old computer scientist from Vladimir, Russia has volunteered for the procedure. Valery suffers from a genetic disorder called Werdnig-Hoffman disease, a disease which affects his ability to sit up, causes significant breathing problems, and is a type of spinal muscular atrophy – the leading cause of infant mortality in the world. It is also the most severe type of this disorder, and diagnosed patients typically do not live past twenty years of age. Despite this, Valery has lived to thirty, but understands that his condition gets worse every year. “I can hardly control my body now," he said. "I need help every day, every minute. I am now 30 years old, although people rarely live to more than 20 with this disease."[xiii] What makes this a rather interesting case is the fact that germ-line editing or somatic cell editing cannot be used to treat the disease. The primary effect of this disorder is that the motor neurons do not produce detectable amounts of the protein SMN, which is vital for muscle growth in the spine. As a result, these kinds of gene therapy are not appropriate forms of treatment. “It will be about curing incurable neurological disorders for which other treatments have failed big time, so gene therapy, stem cells - they all just came to nothing. We have failed despite billions of dollars being poured into this sort of research,” says Dr. Canavero. [xiv] The process involves an immensely sharp cutting tool cutting the spinal cord at the base of the head. Then, using a technique known as “spinal cord fusion,” the head will be reattached on a donor body. “The key to SCF is a sharp severance of the cords themselves," Dr. Canavero explains in a paper published earlier this year, ‘with its attendant minimal damage to both the axons in the white matter and the neurons in the gray laminae. This is a key point. The spinal cord of the donor body will then be fused with the spinal cord of the recipient's head. Chemicals called polyethylene glycol or chitosan can be used to encourage SCF, according to Dr. Canavero. The muscles and blood supply will then be sutured.’” [xv] It is expected that the entire healing process will take around a year, with a mandatory 3-4 week medically induced coma immediately following completion of the surgery. Despite the risk and associated cost, Dr. Canavero is confident that the surgery can and will succeed. “It will be a success. There is a step-by-step, no-risk approach to all this. If step one doesn't pan out, we will work more on that step until it works, move on and so on. There is a detailed plan - we are not just concocting this in some secret Frankenstein lab. We are way ahead now into the project, everything is moving - it is no longer science fiction.”[xvi][xvii]
When it comes to discussing and supporting new technologies and procedures in the medical profession, one of the first kinds of criticisms that come deal with issues of social justice. Generally speaking, these are indeed valid concerns and should be addressed when and if possible. With issues involving the successful tackling of a lack of supply of organs for donors, or being able to perform an experimental procedure, the medical industry and doctors should not be concerning themselves with potential abuses of technology. Nor should they be concerning themselves with worries over who will be first to have access to care, or if it will be distributed “fairly.” Again, those are typically valid concerns – ordinarily. However, when dealing with organ shortages, or deadly and debilitating genetic diseases, medical ethicists must be careful not to hinder treatment options for people who are suffering right now. If an issue is a shortage of organs, the solution must be to increase supply. Despite that, autonomy must be respected, and the ability to choose protected. This being the case, it is a moral imperative for doctors and ethicists alike to support efforts to increase supplies with new and emerging technologies. If bio-printing plays a role in that process, then so be it. And the greater support it receives, the greater chance it has at helping the most amount of people possible.
Likewise, when it comes to commonly occurring genetic diseases (especially those which somatic cell and germ-line editing cannot treat), the goal should be to either lesson instances, or combat it appropriately once it has been diagnosed. If this procedure has even a slight chance at working (and it has much more), it is ethically imperative that medical professionals and ethicists alike show support for it. Sufferers of this disease are rare – few and far between. Yet despite medical professionals’ best efforts, these people have little options for living a relatively normal life. It becomes crucial then that people who suffer with similar diseases not be left behind or forgotten because we are worried about accessibility for some in the future, or potentials for abuse. If those are to be primary concerns, then very few of the medical breakthroughs society experiences today would not exist. Allow the technologies and procedures to come into existence, and then look for just ways of access and availability. Nonetheless, the goal for doctors is to treat people right now. And there are people right now who could be benefitting from these emerging technologies and procedures.
Given the length of this essay, it is understood that a truly comprehensive presentation with significantly more time and data needs to be offered. If this paper can initiate the conversation, and start people thinking about how Trans-Humanist philosophy might provide the basis for some of the answers, then this essay will have been a success. The philosophies and principles of Trans-Humanism have been presented in a way that hopefully gives the reader a more precise understanding of what that means, through concrete examples of those beliefs in action. Trans-Humanism recognizes the fundamental aspect of tool making and tool using in human nature, and does not seek to shy away from that, even if the potential for abuse is there. That critique is misguided, especially when considered in light of the immediate need of such tools. That is not to say that it is always misguided. Rather, a doctor’s first priority is to the patient in their office. There is an immediate and serious need for these emerging technologies, and it is the responsibility of medical ethicists and medical professionals to unite in solidarity over them – especially considering their impact and usefulness. Many of these technologies are some time away, while at the same time, not all that far off. The confidence in them by the medical community continues to grow steadily, and their potential cannot be overstated. Specifically, somatic cell and germ-line editing, although supported generally by the author, are not appropriate forms of therapy in all cases. Some disorders need something else; something more. In other cases, organ procurement is a complicated and difficult process and issue. If there existed a technology that would allow scientists and doctors to literally print healthy, functioning organs – grown using a patient’s own cells – then it is imperative that such technologies be supported.
[ii] “The SMN protein is expressed in all tissues of mammalian organisms, but particularly high levels are expressed in motor neurons (Coovert et al. 1997; Lefebvre et al. 1997). In contrast, individuals affected by the most severe form of SMA, Werdnig-Hoffman syndrome or SMA type I, have barely detectable levels of SMN in motor neurons. (Coovert et al. 1997; Lefebvre et al. 1997).” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2168095/
[iii] “Spinal muscular atrophy (SMA) is an autosomal recessive neurodegenerative disorder, leading to progressive muscle weakness, atrophy, and sometimes premature death. SMA is caused by mutation or deletion of the survival motor neuron-1 (SMN1) gene. An effective treatment does not presently exist.” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369530/
[iv] “Spinal muscular atrophy (SMA) is a common autosomal recessive disease that is the leading hereditary cause of infant mortality.” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2168095/
[v] “Our mission is to advance organ availability and transplantation by uniting and supporting our communities for the benefit of patients through education, technology and policy development.” https://www.unos.org/about/mission-values/
[vi] See Graph: https://www.unos.org/data/transplant-trends/#waitlists_by_organ
[viii] “The system, known as presumed consent, will mean that people who do not want to donate their organs will have to formally opt out. It comes into force on Tuesday (Nov 31,2015) and supporters say it will save lives with organs available to patients across the UK.” http://www.bbc.com/news/health-34968491
[xii] “It also uses open-source software that the researchers say they invite others to hack and improve.” http://www.livescience.com/52571-3d-printers-could-build-organs.html
[xiv] “So actually, head transplant or body transplant, whatever your angle is, is actually a failure of medicine. It is not a brilliant success, a brilliant advancement to medical science. When you just haven't tackled biology, you don't know how to treat genes, you don't really understand, and you really need to resort to a body transplant, it means that you've failed. So this must not be construed as a success of medical research." http://www.medicalnewstoday.com/articles/301073.php?trendmd-shared=0
[xv] The recipient will be kept in a coma for around 3-4 weeks, says Dr. Canavero, during which time the spinal cord will be subject to electrical stimulation via implanted electrodes in order to boost the new nerve connections.” http://www.medicalnewstoday.com/articles/292306.php
[xvi] This is “a procedure he claims will take around 150 surgeons and nurses approximately 36 hours to complete and will cost around $11 million.” http://www.medicalnewstoday.com/articles/292306.php