Transparency in Biostasis Organizations
What should we ask and what do we need to know?
When you buy an avocado or smartphone or even a car, you do not have much interest in the internal workings of the organizations that made them and delivered them to you. For the latter two you might want to know if there is a warranty or return policy but you do not usually care about the workings of the supply chain, the details of the technology used to make the product, or the specifics of how the companies innovate. If you are going to invest in individual companies then you should want to know more. But as consumers of products and services you only care about how the product works rather than how it gets made.
When it comes to choosing a cryonics or biostasis provider – or whether to switch to a different one – you are or should be very interested in some of the details. A better comparison would be going to hospital for major surgery. You will have discussed the procedure with one or more doctors, asked about alternatives and dangers of the procedure. You might ask how many times the surgeon has done this particular procedure and you might check ratings of the hospital. In the cases of surgery and of cryonics, your life is at stake. In the case of surgery, the surgeon will write a short postoperative note and a longer operative report and the patient will be provided with a discharge summary.
When it comes to medical procedures, comprehensive, comparative success and failure rates are not universally available and can depend on the hospital’s policies and the legal framework of the country or state. The value of knowing more about medical procedures has led to a push to establish public reporting systems for hospital performance indicators, including patient outcomes and safety measures.
In the case of cryonics, our potential future life depends on how well we are preserved. In a previous essay, I compared the various biostasis organizations in terms of how they plan for long-term maintenance of patients both physically and financially. That included a discussion of financial transparency in terms of reporting on investments and investment strategy. Other kinds of transparency matter too.
We will want to know something about how decisions are made. We should be interested in a reasonable level of detail about the procedures used to get us into biostasis. We will want information about the quality of cryopreservations and how this is changing over time. We will want to know the size of the organization along with its financial soundness. We will want to know if the organizations does research, whether it is open to in-person visits, how well and how often it communicates with members, and whether errors in procedures are both identified and resolved.
Reasons for wanting transparency
We have multiple reasons to insist on transparency in the workings of cryonics organizations:
Our lives depend on good biostasis outcomes.
The wider society pays little attention to biostasis (other than to dismiss it).
We want outcomes to improve and that means knowing what is going right and wrong.
Because most non-cryonicists are hostile to it, we need to show that organizations are transparent to build trust.
Transparency holds individuals and teams accountable for their actions and decisions. It encourages ethical behavior, as actions and outcomes are visible to others and subject to scrutiny.
Transparency enables us to see what procedures are being used and to suggest better ways thereby encouraging more innovation.
Transparency into cases enables us to see whether problems are being resolved and improvements are being made.
A norm of transparency helps differentiate better from worse organizations and makes it less likely that the worse ones will flourish.
By promoting openness and regular communication, transparency can help identify risks early and develop strategies to address them. Transparent organizations are better positioned to anticipate challenges and respond proactively.
Transparency is understandably limited in certain ways by the need to protect member and patient privacy. Even members who are “open” or non-confidential may prefer that details of their medical conditions are not exposed. Of course, confidential members or patients can be protected by anonymizing case data. This is more complicated than it might seem. If a case summary or report omits the person’s name but includes their location, interested parties may be able to figure out that person’s identity.
One way to address this is to provide only the month of a case and the state or country in which it took place. Omitting the specific date and more specific location and leaving out the person’s age and other details makes it harder to break anonymity. With so few people being cryopreserved currently, investigators have an easier time uncovering identity, such as looking at what was reported about the medical condition of the patient during the dying process.
Quality control
Meta-analysis: Another way to protect privacy while providing crucial information about outcomes and quality of procedures is to conduct meta-analyses. (See the Alcor section for examples.) A meta-analysis takes in data on each case and outputs trends. These include the percentage of cases with and without a standby, the percentage of patients receiving cryoprotection, and average delays between clinical death and the start of biostasis procedures.
As the number of cases grows – both Alcor and Cryonics Institute have seen increased case frequency recently – it may simply be unworkable to produce detailed fact-checked case reports for every patient – even excluding confidential patients. A meta-analysis still requires collecting a lot of data but has no need for a detailed narrative for individual cases.
Case reports and follow-up
Case reports and follow-up: For organizations with many and growing numbers of cases, something like the following approach might be most workable while respecting the considerations above:
Detailed case reports for some cases – those for non-confidential patients and where outcomes or procedures are unusual.
A case summary for each case for non-confidential members. For confidential members, with no case summary or one with any identifying information omitted.
Provision of all case data to meta-analysis researchers outside the organization with confidentiality agreements to protect the case-specific data.
Whether or not a full report is prepared for a case, at a minimum the data needed for the meta-analysis should be collected and an “Issues and Actions” document prepared. That details anything that did not go well and recommends actions to prevent or minimize the chances of a recurrence. An after-action review is helpful in developing and refining that document. The more people who have access to Issues and Actions the better. At least these documents should be available to trusted outside parties to conduct audits and/or produce a meta-analysis.
Areas where transparency is especially important include:
Membership and patient numbers (American Cryonics Society has a policy not to provide these numbers, which is one reason ACS is not included in the current review)
Financial statements
Procedures and protocols (cryoprotectant used, cooling method, medication protocol, and so on)
Case reports, meta-analyses, and quality control measures (are errors and problems reported? Are they resolved?)
List of directors
Board meetings where organizational policies are discussed and minutes or other reports of the meetings (in non-profits)
Communication with members (including regular newsletters). Participation in conferences.
Openness to in-person visits.
Information on research being done
How transparent are the leading biostasis organizations?
To answer this question for each organization, I restricted myself to checking official websites. Some individuals outside of management may have access to additional information but the goal here is to evaluate availability of information for those lacking privileged access.
Alcor Life Extension Foundation
Membership and patient numbers
This information is shown on homepage and updated monthly. Also here.
Details: https://www.alcor.org/library/alcor-membership-statistics/
For something like eight years, there has been a difficulty in comparing the number of people signed up to be cryopreserved between organizations. Alcor has always made this clear. Up until a year or two ago, there were two types of member: Cryopreservation Members and Associate Members. These numbers were always reported separately.
Associate membership is no longer offered. In its place is “basic membership” which does not include a contract for cryopreservation but does qualify people to have their pets preserved. (This option previously was available only to cryopreservation members.)
In recent membership statements, basic members are clearly distinguished from cryopreservation members. As of December 31, 2023, there were 1,424 cryopreservation members, 40 basic members, 225 patients, and 247 applicants and associate members. International and state-by-state numbers used to be reported in Cryonics magazine but have not been published since mid-2023 (see below).
Financial statements
Alcor’s website provides financial statements going back to 1990 with 2022 being the most recent at this time. For many years, statements have been reviewed by an independent agency and more recently full audits have been done annually. Reviews and audits provided an independent check on accuracy and a good thing to do. These cost thousands of dollars with audits being more expensive than reviews so may be financially challenging for new, small biostasis organizations.
Procedures
Alcor provides detailed manuals on procedures and training. These include the Alcor Human Cryopreservation Protocol, the highly detailed Human Cryopreservation Procedures Book, and a (procedural) article on field cryoprotection. Alcor’s existing protocol was authored by Aschwin de Wolf and was part of the Procedures book authored by Aschwin and Charles Platt. It is not clear how procedures are being revised and published now and the manual has been moved from the main website to an archive site (as have many other documents that still reflect current procedures). There have been no new scientific or technical writings originating from Alcor since.
Case reports and quality control
Informative and accurate case reports enable people both inside and outside the organization to see how procedures work in the real world. Case reports should state both what happened in detail and also what went wrong or could have gone better. Case reports should include a section specifically examining issues that arose during the case or that were spotted in a debriefing along with corrective actions taken or to be implemented.
Alcor’s website provides case summaries since 2021 with links to full case reports for many of the cases. An archive page lists all cases going back to 1967 with links to case summaries and reports when available.
What to include in a case report is a major topic in itself and beyond the scope of this essay. Working with outside consultants, in 2016 Alcor developed and adopted a Case Report Checklist to be referred to when writing reports. This includes such things as:
Using a standard timeline format (a separate list is provided for items to include)
Including an Issues and Actions section where problems are identified and corrective action specified
Removing details of the hospital, hospice, physicians, and mortuary to protect relationships
Confirm the confidentiality status of the patient
Recommendations to include sections in every report covering a description of the current protocol, patient assessment and pre-deployment, stabilization, field surgery and washout, medications administered with times and dosages, transport, cryoprotective surgery, perfusion, cool down, graphs (a separate list is provided), and so on.
Individual case reports may not suffice to reveal trends or to confirm that previous issues and problems have been addressed. The report may identify any issues and state that they will be addressed, but were they? Also, many cases do not have case reports. When I was running Alcor, I asked for a compilation of the Issues and Actions sections of case reports over a number of years. The compilation was created but I do not know if the next step happened. That would be to go through the compilation and check on the resolution of each issue. So far as I know, this compilation is only for internal use and cannot be accessed by people outside the organization.
The Issues and Actions section of reports and an examination of corrective actions taken over time are a couple of forms of quality control. Another powerful approach is to conduct a meta-analysis. As mentioned above, this form of analysis pulls from numerous case reports and highlights trends over time for important metrics of procedures and outcome quality. In the past, Alcor has commissioned this work and published the results in Cryonics magazine. You can look at analyses of cases form 2000-2020, from 1967-1999, and from 1967-2020.
Unfortunately, Alcor has stopped supplying the necessary information so the analysis ends in 2020 when the project was completed to that point. There does not seem to be a desire to make this an ongoing project. It would be helpful if the meta-analysis was updated every few years, if not annually. If the results are not flattering to the organization there will be a temptation to discontinue the analysis.
Alcor pioneered the use of CT scans in case reports for its neuro patients but recent reports include statements that “the post-cryogenic cooldown CT scan will be done with the patient at liquid nitrogen (-196°C) when the in-house CT scanner is operational.” On the positive side, Alcor is the only cryonics organization that calculates an S-MIX score for its recent patients, which provides a simple metric to understand the estimated ischemic injury sustained prior- and during a case. In principle, it should be possible for outsiders to calculate an S-MIX score for a cryonics case, provided there is enough time- and temperature data in the case report. One might argue that if that level of detail is absent, a case report lacks important information.
Transparency can be uncomfortable. Since our lives depends on biostasis going well, we all have reason to push organizations past their discomfort. Of course it would help if other organizations undertook similar projects. In fact, meta-analysis *plus* secure third-party access to case data might be a superior approach for organizations with a high case load.
Board meetings, minutes, and directors
Anyone should be able easily to find out who is in charge of a biostasis organization. That includes management and the board of directors. The latter is especially important in a non-profit organization. Any organization that conceals such information should be shunned. Merely knowing the identities of directors does not tell you much about what decisions are made and how they are made. Anyone with an interest in the organization should be able to review the minutes of meetings.
Alcor’s website lists the directors, staff, as well as advisors. Links to these positions and other officials are provided online. In several cases of which I am aware, directors have been excluded from the list on the website or have arranged to be excluded from search engines. However, all directors are (and have to be) listed in the financial statements.
Unfortunately, Alcor does not make minutes of board meetings available to the public. Availability is limited to Officials. Alcor is less transparent than the Cryonics Institute in this regard. An alternative to providing the minutes could be for the president or chair of the board of directors to write a regular report on what was discussed and decided at meetings and to publish that report in a newsletter.
I attended quite a few board meetings in the late 1980s and in the 1990s and, of course, while I was at Alcor from 2011 to early 2023. In the early days, board meetings were completely open and attended by many members in the area (Southern California at the time). In later years, board meeting were open to members who are on the Officials list either in person or, more usually, virtually.
One unfortunate trend I observed in the last few years is a growing tendency toward excluding all but directors and staff from an increasing portion of these meetings. For many years, the entire meeting was open, enabling members to hear what was being discussed and decided. There would be occasional exceptions when a confidential member or a legal case was being discussed but openness was the strong default. Now, the opposite is true. After a brief public session the meetings are closed to all but directors and staff. It may not be a coincidence that these recent years have seen a growing number of attorneys on Alcor’s board and in management.
Reports are made to the board regularly by some staff – including the Medical Response Director, Finance Director, Director of Innovation, and so on. These provided value in showing members what everyone was working on, their priorities, and their progress. These used to be discussed during the meetings but that practice was discontinued to save time. It would be good practice to either make these available to the membership or at least highlights from the reports concerning important technical and administrative matters.
Communication with members
Up until a year or two ago, Alcor News was sent to members every month. So far as I can determine, only three newsletters were sent out in 2023 and two so far this year. Newsletters going back years used to be available on the website but not anymore. The blog has not been updated since December 15, 2022. It appears that Cryonics magazine, which has been published for decades, is no longer coming out. The last issue was a year ago. . One of the consequences of Alcor stopping publication of its magazine is that it stopped publishing country-by-country and state-by-state breakdown of its members.
Alcor has held a conference every few years, the last being in 2022 (not counting a special non-conference event in 2023).
Alcor makes little use of its social media accounts such as Facebook and LinkedIn, except for linking to stories where Alcor is featured in the (tabloid) press.
In summary, Alcor is transparent in important respects, such as by providing financial statements and lists of management and directors. But the trend for several years has been toward turning inward and reducing communication with members.
Cryonics Institute
Membership and patient numbers
This information is shown on the Membership Statistics page and updated frequently. The current numbers – curiously the page says April 2024 although it is still March – are as follows. Members: 1,966. Patients: 254. (This includes around 20 American Cryonics Society patients.) There are also numbers for people with pet arrangements, DNA or tissue samples, and members with standby arrangements with Suspended Animation. The distribution of members across countries is also provided. The total membership is listed as 2,220.
These membership numbers are not easily comparable to those of other organizations. Total membership clearly consists of members plus patients. But “member” means something different than at Alcor and other organizations. Some CI “members” do not have cryopreservation arrangements. Some of those may have completed paperwork but not provided funding. They are counted as members because they have either paid the lifetime membership fee or are paying the annual fee. People in this situation are what Alcor now calls “basic members” but they are not cryopreservation members.
Also, it is not specified whether individuals with arrangements for pets and tissue storage are counted in the member count. This combined with the non-cryo form of membership makes it impossible to determine how many cryopreservation members CI has. CI used to report this clearly. However, as former long-time CI president Ben Best has noted, “In September 2015, CI ceased reporting how many of its Members have funding and contracts for cryopreservation. Historically, less than half of CI Members have been funded (prior CI statistics).” Prior to 2015, CI published a clear number for cryopreservation members under a column labeled “CRYO”.
I have brought this up with CI leadership several times but the former way of clearly stating cryopreservation members has not been restored. The page on CI’s website that responds to my complaint (“Honesty in Membership Reporting”) avoids the issue. This is unfortunate because current and potential members want to know how many people actually have cryopreservation agreements. The numbers that CI does provide are informative but lack this important element. You can find more discussion of this issue here. As a consequence, we do not really know which organization has the most members with cryonics arrangements, although if the “less than half” ratio still persist, the organization with the most cryomembers is Alcor.
Financial statements
CI provides financial statements on its website going back to 2006 and up to 2022. 2022 appears to be the first time financial statements have been audited. There was resistance to doing this in the past, the reluctance being attributed to the cost. This improvement in reporting is commendable on CI’s part.
Procedures
Given the lack of case reports (as opposed to case summaries which is what CI’s “reports” really are) we would expect details of cryopreservation procedures to be available. There is a page dedicated to cryonics procedures but it is very brief. There is another brief page on washout and perfusion instructions. After searching the website and especially checking the CI Resource Library page, I was unable to find more detailed protocols and procedures.
Case reports and quality control
CI provides “case reports” for patients numbered 155 through 254 (2017-2024). CI can define “case report” however they like but I think most people would expect more than two or three paragraphs. Many of CI’s reports are comparable to the brief case summaries that Alcor publishes (although the latter have become shorter over the last few years). I have not done a word count of all the available reports but I randomly checked a quarter of them. Other than the empty pages where cases are confidential or information not yet available (the decade old case #156 has no information), the word count varied from 32 (#199) to 652 (#201) with around half being fewer than 200 words.
To put this in perspective, Alcor’s case reports are rarely shorter than 2,500 words and can run to 10,000 words. They include several standard sections, along with graphs and sometimes CT scans. Tomorrow Biostasis recently published their first four case reports. These are in PDF format so rather than word count I can give the page count. The reports are 11 to 12 pages except for the second one which is awaiting additional data.
Longer is not necessarily better. Reports can be extended by included a lot of personal detail and loose writing. However, reports can be too short and lacking in useful data.
Writing case reports is hard work. Data has to be gathered from multiple sources, integrated, and reported clearly and accurately. Alcor has one person working on reports as almost their exclusive job. CI’s much smaller staff – and resulting lower costs – understandably make it difficult to provide detailed reports. It is commendable that CI promptly publishes case summaries. If producing full reports is not feasible, I would urge CI to provide data for meta-analysis, if another organization is funded to do that work.
In the absence of detailed reports, observers have limited information and no discussion of things that went wrong and remedial actions taken.
Board meetings, minutes, and directors; staff, advisors, officials
Cryonics Institute lists Officers (who must also be directors) here. I was unable to find any mention of staff or advisors. Summary minutes are provided for Board meetings from January 2007 to September 2023.
Communication with members
Cryonics Institute has, to the best of my knowledge, been consistently good in communicating with members. They publish an extensive magazine/newsletter. CI does not hold conferences but CI’s president did participate in the 2022 Alcor conference. Although CI does not hold conferences it does have a public annual meeting at which directors are elected. This functions as a kind of mini-conference and opportunity for socializing and visiting the facility.
Considerable documentation is available on the resources page.
Tomorrow Biostasis
Tomorrow Biostasis is a relatively new cryonics organization, founded in 2019. Despite the organization’s youth, it is well funded and staffed and is setting a high standard for transparency. You can find information about Tomorrow Bio’s organization and companion organizations.
Membership and patient numbers
Membership statistics are provided, including the number of members in the top ten countries. (The member page can be found by following a link from the Directory page.) As of the end of 2023, TB had 357 full members with cryonics arrangements and 49 Fellows. They also note over 400 subscribers and members in over 35 countries and 80 European cities. Tomorrow Bio reports having 4 patients (3 whole body, 1 brain) in long-term care.
Financial statements
Audited financial statements can be found on the companion EBF website. The most recent at this time is for 2022. These are in German so non-German speakers will need to extract from the PDF to translate.
Procedures
Procedures are explained on the website in more detail than CI but less detail than Alcor. These include the SST procedure and long term storage. However, considerable additional information is available from case reports and public reviews of cases as well as many explanatory videos.
Case reports and quality control
TB has had its first cases and patients just in recent months. All four cases are covered in case reports although the second one is not yet complete. The plan is to release all case reports in the January of the following year. That helps to keep the cases anonymous (names and personal information is not released) despite the small number. Reports include a summary of what happened, quality data, and what was learned and what will change in future cases.
It is encouraging to see that Tomorrow Bio does CT scans of all of its patients and includes the results in the case reports. This is only practicable if an organization has their own CT machine. Neuro/brain-only patients can be relatively easily transported to an external imaging lab if the distance is reasonable.
You can watch the 1.5 hour discussion of four case reports for 2023 as well as answers to numerous questions here.
Board meetings, minutes, and directors; staff, advisors, officials
The website lists the Tomorrow team which consists of three founders and ten staff members. There is also an explanation of the organizational structure, most importantly the European Biostasis Foundation (EBF) which manages patient storage.
Tomorrow does not have a board (it is not a non-profit in structure) and so there are no board meetings. However, the non-profit related organization, EBF, publishes all major board decisions in its activity report.
Communication with members
You can sign up to receive updates from Tomorrow. You will receive a weekly newsletter. This is a surprisingly frequent output for such a young organization. Tomorrow has organized several conferences, some at its facility, and founder Emil Kendziorra has participated in many other conferences and meetings.
Tomorrow maintains a blog and produces videos that answer questions, explain cryonics, and rebut objections. Tomorrow has a presence on Discord (a dedicated channel), Instagram, YouTube, Twitter/X, and Facebook.
TB helpfully also provides a research roadmap.
Southern Cryonics
Australia’s Southern Cryonics has only recently started operating – about a year ago. As such, and with no cases yet and no financial statements, it is probably too soon to evaluate transparency. Membership numbers are not yet published. Membership is also somewhat different from other organizations in that SC has founding members. Founder, director, and chairman Peter Tsolakides says that the organization is very open about how they do things and questions are welcome.
Some information about the organization is available here. The team currently consists of three people. Some updates are provided in the news section.
As Southern Cryonics grows, we encourage it to adopt the best transparency practices mentioned here.
Conclusions
This article provides a current snapshot of transparency at the major biostasis organizations. A few observations to summarize the preceding discussion:
In the past, Alcor has excelled at transparency, publishing protocols, case reports, financial statements, regular communications, and much more. In the last few years, it has been becoming less transparent, with meetings increasingly closed and no minutes or meeting summaries provided, and less communication with members.
Tomorrow Biostasis has made a strong start with membership outreach and transparency, including universal CT scanning for all its patients.
Cryonics Institute has continued to excel at communicating with members and has recently started auditing financial statements but could do better at honest membership disclosure, publishing detailed protocols, and producing informative case reports (or annual meta-analysis) rather than just summaries.
Running a biostasis organization is challenging. Prioritizing transparency makes it even more challenging, especially in the short term. It is in the interest of the organization’s members to push to maintain and, where appropriate, expand transparency. By comparing the various organizations we can hope that competitive pressures will foster openness.