tag:blogger.com,1999:blog-3503957686158274288.post3754462358211644591..comments2024-03-12T12:32:15.598-05:00Comments on On Health Care Tech & Policy: Is the Nuremberg Code Obsolete?Margalit Gur-Ariehttp://www.blogger.com/profile/08777722834145614546noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-3503957686158274288.post-10814346678917259902014-06-05T13:08:39.743-05:002014-06-05T13:08:39.743-05:00"Your" medical records belong to the cre..."Your" medical records belong to the creator of the records. You have a moral and legal expectation of privacy. The owner of the records should be able to do research using those records as long as your privacy is not violated.<br /><br />On the other hand, I totally agree that if there is any aspect of your treatment that is chosen for a reason other than your best interest, then you should be informed and give (or not give) your consent.Dennis Steedhttps://www.blogger.com/profile/16650634989784351327noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-14929963908478588502014-04-15T09:49:29.259-05:002014-04-15T09:49:29.259-05:00Thank you. The Hastings Center report is getting p...Thank you. The Hastings Center report is getting philosophical right from the start :-):<br />"All our obligations to do good to society seem to imply something reciprocal. I receive the benefits of society, and therefore ought to promote its interest".<br />Too bad these quotes seem to always exclude those who quote them....Margalit Gur-Ariehttps://www.blogger.com/profile/08777722834145614546noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-55171216131619670532014-04-15T09:25:50.426-05:002014-04-15T09:25:50.426-05:00Kudos to you for your well written and insightful ...Kudos to you for your well written and insightful exposition of where the current push for the collective over the individual seems to be going. The Hastings Center report is worse than chilling and the position of IOM just as alarming.(By the way what David Hume quotes do you mean?) james gaultehttps://www.blogger.com/profile/05537303135780186926noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-6332110135017042412014-04-03T00:03:42.143-05:002014-04-03T00:03:42.143-05:00Two things:
1) Yes, you have to obtain consent to ...Two things:<br />1) Yes, you have to obtain consent to access my medical records, simply because they are MY medical records and I have a "right to be let alone". I am all for proper research and chances are I will allow you to use the data, but it's my call, and my call only.<br /><br />2) Being in a clinic and trying something, something that YOUR doctor who is acting in YOUR best interest is recommending, is not the same as being in a clinical trial where you are assigned to a particular course of action which may or may not be in YOUR best interest, regardless of YOUR doctor's opinion. The point here is that they DO NOT flip coins. That was an awfully derogatory remark by that one committee member. Just because medicine is not 100% exact, doesn't mean that it's purely random either...<br /><br />And here is my question to you: Is it going to kill them to obtain informed consent? And frankly, I don't care if it does....Margalit Gur-Ariehttps://www.blogger.com/profile/08777722834145614546noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-66581039689529787002014-04-02T23:19:28.504-05:002014-04-02T23:19:28.504-05:00Yes Maraglit, I get that. Must I obtain specific c...Yes Maraglit, I get that. Must I obtain specific consent to make note of your condition, what your doc did, and how it worked? That's the question. <br /><br />If I do enough of this, it seems to me it could at least approach the power of a designed clinical trial if the "flip a coin" analogy is mostly right. If you don't want to call it a clinical trial, fine, but in a sense we're all in clinical trials all the time -- we're in a clinic and we try something. I'm having trouble understanding why we should not be EXPECTED to try to learn something from it.Tom Leithhttps://www.blogger.com/profile/07787957132459123765noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-74260707783306927222014-04-02T22:44:14.136-05:002014-04-02T22:44:14.136-05:00I think you are talking about two different things...I think you are talking about two different things. When you heed the advice of a TV doctor, you certainly don't consider yourself to be his or her patient, and vice versa. You are also not "assigned" to one regimen or another without your consent, and without the benefit of your physician's advice, should you choose to seek such advice.<br />Observing the effects of TV advertising, whether by MDs or "personal" trainers or Budweiser, on health does not qualify as a clinical trial, IMHO.<br /><br />The ethical questions raised by MDs selling stuff on TV are, I think, an altogether different issue.Margalit Gur-Ariehttps://www.blogger.com/profile/08777722834145614546noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-55379721467032974472014-04-02T13:20:06.239-05:002014-04-02T13:20:06.239-05:00I'd say that the headlong rush to substitute c...I'd say that the headlong rush to substitute carbs for fats wasn't "natural" at all -- Guild members caused it claiming expertise proper to The Guild (and profited by it). And it certainly had medical consequences.<br /><br />So as long as "Learning Activities" only observe what docs do and what the outcomes are that's permissible "research" with no consent necessary?Tom Leithhttps://www.blogger.com/profile/07787957132459123765noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-11139304580859651362014-03-31T10:11:19.195-05:002014-03-31T10:11:19.195-05:00Howdy Tom, I am not part of the "guild" ...Howdy Tom, I am not part of the "guild" as you very well know, but there is a huge difference in my book between randomizing people into various medical treatments, and observing "naturally" occurring phenomena. <br />I don't consider diet books, or anything else, sold by people on Oprah to be medical treatments, even when sold by people with MD after their names.<br />I think it's the active and willful randomization process which is the problem here, because at that point both patient and treating physician choice and judgement are nullified.Margalit Gur-Ariehttps://www.blogger.com/profile/08777722834145614546noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-67834390409069765442014-03-31T08:48:13.268-05:002014-03-31T08:48:13.268-05:00So here's a question for any medical ethicists...So here's a question for any medical ethicists & docs who may be reading this:<br /><br />I just heard <a href="http://www.npr.org/blogs/thesalt/2014/03/31/295719579/rethinking-fat-the-case-for-adding-some-into-your-diet" rel="nofollow">a story on the radio</a> (NPR; generally reliable about things I know something about so I suppose trustworthy about things I don't know about).<br /><br />"We were finding that if people seemed to replace saturated fat — the kind of fat found in cheese, eggs, meat, butter — with carbohydrate, there was no reduction in heart disease."<br /><br />So, have we all been "victims" of a great, big clinical trial without informed consent &c wherein we learned that replacing fats with carbs doesn't help?<br /><br />What's the difference between this and the SUPPORT oxygen study? Should The Guild consider popular diet books sold by docs and breathless appearances on Oprah unethical? If not, then what's the problem with so-called Learning Activities? If so, what's The Guild going to do about it?<br /><br /> tTom Leithhttps://www.blogger.com/profile/07787957132459123765noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-65637162925547870162014-03-25T17:31:37.201-05:002014-03-25T17:31:37.201-05:00Thanks for the reference. I just read it in the At...Thanks for the reference. I just read it in the Atlantic. Traditional capitalist interest is the main force behind all of this, so I guess I am not surprised (but I am surprised that Dr. B said it in plain language).<br />Just in case you missed it, in the now doomed, but sure to be revived, SGR bill (H.R. 4015), scroll down to Section 8, where Congress is regulating how public data should be provided at cost to such private entities, which can turn around and sell it back to physicians and other "stakeholders" who may not disclose it publicly (I guess to protect the "intellectual" property of the sellers). Truly amazing stuff....Margalit Gur-Ariehttps://www.blogger.com/profile/08777722834145614546noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-84152066258520422152014-03-25T14:35:58.052-05:002014-03-25T14:35:58.052-05:00Did you see Dr. Blumenthal's interview in Forb...Did you see Dr. Blumenthal's interview in Forbes, March 19?<br /><br />"Now that we have a growing electronic infrastructure for health information, there is a surge of traditional capitalist interest in turning that information into valuable knowledge, and selling it back to patients and doctors. That will happen. But it could never have happened until we got the data into digital form."southern dochttps://www.blogger.com/profile/01776088660401232570noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-28327362856532518962014-03-20T20:21:21.941-05:002014-03-20T20:21:21.941-05:00If ONC spent $24 Billion on EHR and we have not ad...If ONC spent $24 Billion on EHR and we have not addressed ethics then something is very wrong. Without ethical principles we are relegated to ones and zeros, we no longer have any room for human dignity and informed consent is pure hyperbole. Reasure1https://www.blogger.com/profile/13757327939968173569noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-86104783627689996892014-03-20T20:16:07.224-05:002014-03-20T20:16:07.224-05:00Well done, I agree with you. We need a debate. C...Well done, I agree with you. We need a debate. Currently we are the proverbial "frog in the pot." Our group just presented a paper on ethics and technology, IEEE ACM ITPC Conference, http://princetonacm.acm.org/tcfpro/presentations/Introduction_of_ethics.pdf. I believe you would find the material very interesting. Reasure1https://www.blogger.com/profile/13757327939968173569noreply@blogger.comtag:blogger.com,1999:blog-3503957686158274288.post-62595812213970402142014-03-20T12:12:44.587-05:002014-03-20T12:12:44.587-05:00Hmmmm. What I don't quite get is why there is ...Hmmmm. What I don't quite get is why there is any need to "assign" patients to anything. Docs flip their coins and do what they're gonna do. Health Care Operations make note of whether the patient got heads or tails, and the outcome. Knowledge is refined, papers are published, debate ensues, cookbooks are decried. Some of the Natural Experiments lead to Designed Experiments with consent, randomization, controls and so-forth. Knowledge is refined, papers are published, debate ensues, cookbooks are decried. <br /><br />And it all makes much, much less difference than getting an expectant woman at least once before she gives birth to a AP nurse or a doc who simply does what s/he was taught in med school. <br /><br />I have become about convinced "we" should halt all medical research for about 50 years and concentrate the resources simply on doing all the f*ing time what we already know works pretty well. <br /><br /> tTom Leithhttps://www.blogger.com/profile/07787957132459123765noreply@blogger.com