X-Message-Number: 3758 Date: 26 Jan 95 19:09:54 EST From: Mike Darwin <> Subject: CRYONICS Apples and oranges 1) I did not discuss patient's by name, except where there was such a release (i.e., they gave permission for disclosure of their case history). 2) I used Alcor #'s to discuss Alcor cases; properly these numbers should sheild patient identity. Just because I do not work for Alcor anymore does not mean that I cannot: a) discuss what I have learned/know about cases I did while working there. b) comment on cases (insofar as I have reliable information) which have been done since I left (providing I preserve patient confidentiality). 3) Whether the patients are going to be resuscitated is irrelevant. Case historires containing intimate personal details of peoples' live and most private thoughts are published all the time while the patient is still alive. 4) Regarding Margaret Bradshaw; Margaret was a friend, a colleague, and a patient. That is a very special mixture; but not an unusual one. Many is the physician who has found him/herself in this position. I have read widely in the history of medicine and found detailed discussions of such cases where the personal life of the patient and the personal life of the physician not only intersect, but wherein proper perspective can only be achieved by exploring that interesection. The fact that both Margaret and I have suffered from depression and spoke about it at length is relevant. As Michael Riskin himself pointed out earlier, only people who have really suffered with depression can really understand it. In any event, the brief piece I published on my feelings about Margaret was in no way intended to be a case history. It was more in the way of a euology with the cautionary notes added in (as they often are) about what other people's lives and death's can teach us. Watching Margaret help Jerry fight for his life left me no doubt of her committment to it. I knew her well enough to consider her a friend, and to say what I said in the way I said it, and frankly, don't give a damn what Cosenza and Riskin think. 5) As I've said before, I believe that I have the right to discuss infornmation (without disclosing names) and to draw conclusions from it. Riskin in particular should know that the psychiatric literature is rich in this tradition. Whole books have been written discussing interpretations of cases first discussed by Freud, Jung and everybody since. 6) If the implication is that Alcor ID#s or ACS ID#'s are not sufficient protection of patient confidentiality (something Cosenza does not see as a problem but perhaps Riskin does) then I am open to suggestions of alternative coding systems. However such systems MUST be verifiable in that the creation of "fake patients" or composite patients should be avoided; and, regretably, the medical literature, both psychiatric and otherwise is replete with such misbehavior. 7) By way of example, Dick Jones and I were friends as who also shared a professional relationship. I note that during my tenure at Alcor there was no concern about disclosure of personal information regarding Dick's case where it served Alcor's interests (in articles in CRYONICS). Because I had a close personal relationship with Dick and participated in his cryopreservation does not cut me off from discussing my personal thoughts, feelings and conversations with him; except where they bear on confidentiality related to his cryonic care. A legitimate question then is "where do you draw the line?" That is a worthwhile subject for discussion, but has not been addressed in that manner by either Riskin or Cosenza. My own answer is that this will always remain an area of debate and personal judgment. 8) As to Cryonet not being the place for such discussion as Riskin and Cosenza(?) assert: I couldn't disagree more. Michael Riskin call it a "public forum", presumably as opposed to medical journals, which aren't? What is really, it seems to me, being implied here is that such discussion is OK among "professionals" but not acceptable for the net. Well, I have bad news for you: The net is the professional forum of the future, and, good or bad, it is going to break down barriers of communication and open communication to a much broader range of people than ever before. An example of this is that some of bizzare and ad hominem posts which go on here would never have made it past the editors' wastebins in the case of journals or the recepients' wastebin in the past. But BECAUSE the net is "public" people not only get to see such communications, but others (who would never spend a moment of their time doing so) feel compelled to respond to them! Finally, I will continue to draw on my reservoir of experiences in doing human cryopreservations. If Alcor doesn't like me using Alcor case numbers I am more than willing to use arbitrary numbers which I assign to each patient I discuss. All that needs be done is for Alcor's CEO to call me or send me a letter. However, if the notion is that I cannot discuss well over 10 years of my career and the experiences that made it up, well that's another matter altogerther, and perhaps one for the courts to sort out if Alcor wishes to take it that far. (For instance, if an MD leaves a hospital I know of no precedent for him being unable to discuss or write about patients he saw there, provided he respects their confidentiality.) Finally, if this (whatever exactly "this" means: what Cosenza thinks shoulkd be disclosed, what Ruiskin thinks, what the Alcor Board thinks?) is to be Alcor's standard for the future, I suggest they draft up a document and have all their employees, contractors and volunteers sign it. I certainly never signed such a document -- and wouldn't today. In the meantime I will proceed exactly as I have. Rate This Message: http://www.cryonet.org/cgi-bin/rate.cgi?msg=3758