A courageous story of brain preservation, "Dying Young" by Amy Harmon, The New York Times

by oge5 min read15th Sep 20151 comment


Personal Blog

The recent major media article by Amy Harmon brings to the public eye the potential of human cryopreservation and chemopreservation techniques to preserve the memories and personal identity of individuals. We at the Brain Preservation Foundation have considered many common counterarguments to this endeavor (see below, and our FAQ and Overcoming Objections backgrounders) and yet we still think it is a worthwhile idea to pursue. Please let us know your thoughts as well.

Yesterday, journalist Amy Harmon published an article in the New York Times“A Dying Young Woman’s Hope in Cryonics and a Future.” First of all, it is a tragic story about a woman, Kim Suozzi, who had an incredibly unfortunate diagnosis of cancer at a young age and was forced to make some very difficult decisions in a short time frame. The story of how she faced those decisions with great foresight and resolve, with the help of her partner Josh, her family, as well as the broader internet community, is deeply moving. We want to extend our condolences to everyone in Kim’s life for their terrible loss. We also want to stand in hope and solidarity with Josh and Kim that she may return one day to those she loved.

When it comes to the specifics of Kim’s life, we at the Brain Preservation Foundation (BPF) don’t think it is our place to discuss individual brain preservation cases. Our focus, as you can find in our mission statement, is to try to advance scientific research on the viability of preserving individual memories and identity. This research still has many current unknowns, as the NYT article points out well, and there will be a long journey of scientific investigation ahead. Yet an increasing number of people think these unknowns deserve answers. We also want to help society have conversations about the social issues of choosing brain preservation in a more open and tolerant manner.

Because this story has stimulated a lot of public discussion already, we want say a few words and invite a conversation here on our blog on the issues that have arisen in response to it. Many of the responses to the article have attacked the motivations and ethics of Ms. Suozzi. That’s unfortunate, but it’s also to be expected owing to the fact that the idea of brain preservation, as Ms. Harmon notes, involves numerous sensitive issues on which many of us already have strong views. To question our own views and assumptions on this topic, and to admit that others may make different choices (which may be good choices for them even if not necessarily for ourselves) takes a level of courage and evidence-orientation that we at BPF seek to encourage in our work and public outreach.

Although the primary interest of the BPF is technical research into brain preservation techniques and verification, our social mission maintains that for those who desire it, brain preservation may have a variety of positive social benefits. In our view, to denigrate an informed and reasonable decision that someone makes to preserve their brain at the end of their life, when existing medical technology has otherwise failed them, is both hurtful and self-centered. And as a neuroscientist herself, Ms. Suozzi was certainly able to make an informed decision. There is early evidence to back the brain preservation choice for those who would make it today, as we chronicle here at BPF, and that choice makes sense at the present time to a small but growing subset of the population. If scientific evidence continues to build, and preservation procedures can be validated, then as costs come down, that group will likely grow.

Among the more informed responses described in the article, much of the disagreement appears to come down to a few core differences in perspective. One difference is that some people are more interested in our current technical capabilities and procedural options (and limitations thereof) rather than in speculating about where current trends may take us in the future. These individuals often have significant differences in the expected science, technological, and societal futures they find reasonable (or worthwhile) to imagine today.

Another difference in perspective is whether mind uploading (transfer of our memories and mind to a computer) is possible. Some argue that our memories or full identity may never be fully simulated by a computer. Those individuals may expect they would need to come back in a biological form, in a society using advanced nanotechnology (the molecular biology of our own cells is a type of nanotechnology). Others doubt whether a simulation would be “merely” a “copy” of you (eg, if Star Trek transporters existed, and those using them claimed to be the same at the other end, would you believe them?). Philosophers such as Derek Parfit have argued that what we usually think of as personal identity would preserved by a technology that allowed you to transport in time or space, and many at the BPF find this argument persuasive. See, for example, Ken Hayworth’s article “Killed by Bad Philosophy“. See also BPF Fellows Michael Cerrullo and Keith Wiley’s articles on this topic: Part 1 and Part 2.  Some people wouldn’t mind if they only came back as a “copy” for their loved ones and for society. Others already think of themselves as “copies”, since our bodies copy our our cellular patterns every day, using entirely new molecules, to keep us alive. For some of those individuals, the brain preservation choice already makes sense. Perhaps the subtleties of the copy question will be settled by future cognitive science.

Another debate concerns the expected level of detail of neurological emulation that will be required to perform mind uploading. As with many debates, some disagreements involve different uses of the same words. For example, in his book, BPF Advisor and Princeton neuroscientist Professor Sebastian Seung defines the connectome as including both anatomical and functional connections between neurons. On the other hand, the use of the term connectome in the scientific literature usually refers to mapping anatomical connections alone.  So for some neuroscientists, the concept of the connectome doesn’tfurther include the particular states of molecules in the synapse that are known to be involved in learning and memory. In these cases, this level of detail is sometimes referred to as the synaptome

Among neuroscientists who are computationalists, those who think that a functional simulation of our brain’s memories and identities can one day be done via computational neuroscience, many expect that detailed molecular information at the level of individual neurons (at least, key neurotransmitter and receptor densities) will be needed. This is a question many neuroscientists working in learning and memory are presently racing to try to answer. Some neuroscientists think that an anatomical connectome, as well as basic functional information (such as classification of cells into approximately 50–200 types based on morphology), might be enough to achieve mind uploading. But most advocates of mind uploading expect some level of synaptome preservation will also be required. See BPF co-founder John Smart’s Preserving the Self for Later Emulation for one view on the level of synaptic detail that may need to be preserved. As neuroscientific understanding improves, BPF wants to make sure our existing brain preservation protocols do in fact preserve the necessary synaptic and molecular information at death.

You can find more discussion about what level of detail may be needed in the Whole Brain Emulation Roadmap (pdf; see especially Table 2), as well as in recent BPF interviews with Princeton professor of psychology and neuroscience Michael Graziano, Dr. Shawn Mikula of the Max Planck Institute for Neurobiology, and Stanford neuroscientist Bob Blum. The position of the BPF is essentially that preservation of anatomical morphology is almost certainly required for successful mind uploading, and is likely one of the most difficult goals for any current brain preservation technology, therefore making it a critical measure of the quality of a preserved brain.

Finally, our surveys to date have shown that the cost of brain preservation, to the individuals and families currently considering it, is the presently the most important factor for those contemplating the choice. If, in coming years, these procedures are confirmed to preserve memory in model organisms (if we “break the code” of long term memory storage, as many neuroscientists are trying to do today), then as science and technology continue to advance, the cost of brain preservation by both chemical preservation and cryopreservation should come down substantially. Chemical preservation may offer a particularly low cost and simple option, if it can be scaled to work with human brains. Such decreases in cost may alter many individuals’ calculations as to whether brain preservation is a good choice as the end of their lives approaches. At some point, if global social wealth continues to grow and preservation costs continue to drop, and if we confirm that these techniques preserve memories in model organisms, many more people may choose to be preserved using all reliable methods, in all societies that allow them. If such confirmation occurs, we at BPF will do our best to ensure affordable and reliable brain preservation options are available to all of us, anywhere, who might wish them available at the end of our lives, for ourselves, our loved ones, for science, or for a better future world. See our vision statement for more.

For readers who are interested in continuing this discussion, and in weighing in with additional thoughts on the topic, please reply in the comments, or get in touch. Furthermore, for those who would like to help the BPF in our work, here’s a short list of ways you can help.

In conclusion, we would like to thank Ms. Harmon and the New York Times for having the courage to write an article that highlights this important and still poorly understood topic in such a lucid and fair way. Finally, we would also like to thank Ms. Suozzi for her courage and thoughtfulness, and for being an inspiration to the growing number of people who choose to see the world and themselves in a similar way.

Cross-posted from the Brain Preservation Foundation blog. Disclosure: I helped edit drafts of this article.


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