Saturday, March 13, 2004

The Ethics of Bioethics
Or the Lack Thereof
Leon Kass delivers lecture at Harvard  3-12-2004
Amy Greenwood has a nice blog, positive and dense.  It's nicely designed, with well-written articles.  The only criticism is that she doesn't post very often.  On 3/11/2004 she posted some comments about a lecture she had attended.  The lecture had been given by Leon Kass.  Dr. Kass is the head of the President's Council on Bioethics.  An excerpt follows:

In short, Kass' position is that some of the controversial biomedical advances being developed today will degrade our humanity and trivialize our lives. Even if we approach them with the best intentions, we will be less human if we embrace them.

In particular, he made examples of stem cell biology, therapeutic cloning, genetic enhancement, psychotropic drugs, steroids, and longevity research. For each technology he mentioned a few of the possible real dangers, and then claimed that worse than these, we would lose most by the fact that our thinking about our lives and identities would change.

It is precisely here where I dig in my heels. I am willing to admit that many good technologies have a bad side, perhaps even that every advance has a cost. If that was his message, I would agree with him. But it's not. Kass proposes that the consequence of getting what we desire: good health, longer lives, decreased suffering, will cause us to cross a line into triviality. He specifically says that our lives will be less rich, less meaningful, less heroic. We will be less human.

Wow. That's some thesis.

Dr. Greenwood's article caught my attention, because it addresses a topic that I considered in a term paper I wrote in 1978.  At the time, I was taking a course in the ethics of science.  The assignment was to write about an ethical issue pertaining to science, but that had not been covered in class.  I chose to write about the potential impact of neuroscience on our perception of ourselves as humans.  The paper is long gone, but I remember the outline.  I began with a review of the impact of three important scientific developments:  the Copernican notion of a heliocentric solar system, the Darwinian view of evolution, and the Freudian view of human psychology.  I argued that all three developments had successively dehumanized humanity.  First we were dethroned from the center of the Universe.  Then our bodies were equated with those of other primates.  The final blow came when the greatest products of the human mind: our art, literature, etc., were revealed to be the product of mundane impulses of sex and violence.  First our planet, then our bodies, then our minds; all were revealed to be nothing more significant than any other pile of molecules. 

Modern neuroscience, I argued, would extend the dehumanizing impact of science.  Not only would our thoughts, but our emotions, would be understood as mere chemical reactions.  Reactions that could be replicated in a test tube would be no more and no less meaningful that love, hate, striving, or desperation. 

In 1984, (irony noted), I spent the summer in the lab run by Charles B. Smith, MD, Ph.D..  We would grind up rat brains and run assays on the alpha-2 receptors in the locus coeruleus.  We also drew blood from patients with panic disorder, and compared the binding characteristics of platelet alpha-2 receptors before and after treatment.  I gained a better understanding of neuroscience, and in so doing, gave up my belief that neuroscience is inherently dehumanizing.  Quite to the contrary, neuroscience helped me understand more clearly the need for humanistic values in medical practice.

Dr. Kass' lecture seems to have been noticed by few.  The Harvard Crimson staff took a picture of him and published it, but did not publish an article on the lecture.  Likewise, nothing appeared in the Boston Globe.  The Crimson does have an article  written by a student before the lecture, but nothing about the lecture itself. 

Dr. Greenwood reported that Dr. Kass commented on psychotropic drugs and that he claimed " we would lose most by the fact that our thinking about our lives and identities would change."   [Dr. Greenwood's words, presumably not a direct quote from Dr. Kass.] 

I wanted to see more of what Dr. Kass has to say on the subject of psychotropic drugs.  So, I looked around on the Internet.  The first thing I noticed is that the bioethics.gov site has no search function.  This seems odd.  It is as anomalous as finding one of Saddam Hussein's palaces with no toilet.  Even The Corpus Callosum has a search function. 

Ok, so the lack of a search function is a minor gripe.  You still can find things; you just have to take more time doing so.  In so doing, I found that Kass has published a book, Beyond Therapy: Biotechnology and the Pursuit of Happiness (ISBN: 0060734906) that can be purchased at the American Enterprise Institute website.  It is listed as comprising 352 pages.  This is curious, because there is a 4.6Mb PDF file with the same title, containing a 347-page document, available for free download from the bioethics.gov website.  Frankly, it seems inappropriate to me that someone would be making money by selling a government publication that is available elsewhere for free.  The publication was produced by Kass in his capacity as a government employee, then he turns around and sells it for profit.  The government website says that they will mail you a copy of the report if you send them an e-mail.  Even if you do not have a computer with which to view a PDF, you still don't have to pay for the book. 

Anyway, rant tangents aside, I did want to see what Kass has to say about psychotropic medication.  Bioethics.gov does have a paper entitled Human Flourishing, Performance Enhancement, and Ritalin.  It is not clear who wrote the paper.  It was used as a background paper for their Thursday, December 12, 2002 meeting.  The session during which Ritalin was discussed was chaired by Dr. Diller, who is described as follows:

 [...]it is a special pleasure and privilege to welcome Dr. Lawrence Diller to the council this afternoon. In an area in which there have been zealots and radicals on all sides, this is a man who has occupied the sober middle voice of moderation, and of care, and of proper concern.

Dr. Diller has occupied the sober middle, a good place for someone talking about a controlled substance.  The man in the sober middle has this to say about the mechanism of action of methylphenidate:

Now, a little bit on the drugs themselves. The way that these stimulants work, is that they block dopamine receptor sites, and therefore increase the neurotransmitter at the synapse, and tagged dopamine seems to show up more at the pre-frontal cortex and the local cerruleus [sic] in the brain.

Now, compare this with the following text from Psychiatric News September 21, 2001 Volume 36 Number 18 p. 18:  (The Psychiatric News article is a summary of the findings reported originally in The Journal of Neuroscience, 2001, 21:RC121:1-5.)

[...]Although methylphenidate has been prescribed for nearly 50 years, its mechanisms of action have been understood only poorly. A central nervous system stimulant, the drug is believed to block both the dopamine and norepinephrine transporters responsible for clearing the neurotransmitters out of the synapse after a signal has been transmitted from one neuron to the next, in the same way that an SSRI blocks the reuptake of serotonin.

PET scan images, taken at the level of the striatum (left) and the cerebellum (right) of a radiotracer specific to dopamine D2 receptors, show reduced binding of the tracer in the striatum after administration of 60 mg of oral methylphenidate (bottom) compared with placebo (top).[...]

Notice two things: 1) The mechanism of action of methylphenidate involves blockade of the dopamine reuptake transporters, not the dopamine receptors, and 2) The increased dopamine shows up in the striatum, not the prefrontal cortex.  (The dopamine displaces the radioactive tracer from the receptors, so the treated patients show less radioactivity where there is more dopamine released.) 

Dr. Diller may be sober, he may not be a zealot or a radical, but in his work helping to refine science policy for the President of the United States, he made two factual errors in one sentence. 

OK, so their science is wrong.  That does not say anything about the policy they advocate.  Perhaps, despite getting the facts wrong, they somehow come up with the correct policy.  What does Dr. Diller say about policy?

[...]I want to get into the issue here of ethics and values. Okay. First of all, the issue of ADHD as a neurobiological diagnosis, and what that means is that either when a child or an adult has this, and what it means politically very often is that it could be used in the service of saying-- "Well, we can't really do anything about this kid environmentally. He is really pretty much determined to have this problem. The only thing is to contain him and to give him drugs." It also again raises issues on a moral level that if indeed they are so determined this way, then in fact if they make wrong choices, they can't be held morally culpable.

I actually like what Russell Barkley says about this. He is the intellectual guru you might say of ADHD, and he says that ADHD might be considered an explanation, but not an excuse for behavior.

Here we see maladaptive behavior as disease, versus accountability and responsibility. This is a big issue in the schools, particularly over discipline. And that the disability movement has held schools accountable in the sense that unless they make adaptations to their children's diagnosis, the child can't be held responsible for acting out behavior. This whole issue really pits the rights of the individual versus the rights of the community in probably some of the most provocative ways.[...]

Dr. Diller does put his finger on one of the important policy questions:  If a person has a diagnosable illness, does that diagnosis provide an excuse for aberrant behaviors related to the diagnosis?  This, of course, is not a medical question.  Dr. Diller makes a good point in this regard:

[...] the ADHD defense has been raised repeatedly in criminal law. It has never gotten a criminal off because those are based more on the McNaghten Rule of knowing right from wrong, but it has mitigated sentences, and I would suspect that you will see wealthy clients using that defense more than poorer clients in criminal cases. [see Wikipedia articles on McNaghten Rule  and Insanity Defense  for explanation]

This underscores a very important point about mental illness diagnoses.  The diagnosis is a description of the illness; it has no other meaning.  It explicitly leaves aside the questions about whether the patient is a good person or a bad person, or whether their behavior is right or wrong.  Dr. Diller makes an error in this regard, in the question-and-answer segment of the Council meeting:

DR. DILLER: You know, we had lunch, and we agreed a lot about problems with the DSM, but being entirely realistic, the DSM is not only an ideological document, but it is a legal and financial document.[...]

Where in the world does he get this??? He is referring to the Diagnostic and Statistical Manual, which is one of the books used to define the diagnostic categories of mental illness.  I agree that the book often is pressed into service in legal and financial contexts, but I maintain that these uses are questionable at best.  The DSM was prepared and validated for clinical and research use.  As far as I know, none of the authors has advocated that it be used for any other purpose.  If the legal profession wants a diagnostic and statistical manual to use in court, let them write and validate their own book.  Same for insurance companies.  

Dr. Diller continues in his erroneous line of reasoning ...

[...]And it is particularly in its accessing services and money that the DSM is powerful, and the DSM for nature will not change until we are able to offer services and/or rights to people in another way.

Again, the drive towards disability, and the drive towards pathologization comes, and people are in genuine need much of the time, and they are looking for help and the way that they can access that help either in terms of services or money is by obtaining a diagnosis.

This economic push, and then there is a service industry built around that, in terms of the physicians and the mental health industry. Until that changes, and again I think that more and more people are asking about that, but there is a very entrenched bureaucracy here that sees it working well.
Immediately after Dr. Diller concluded that above, another participant, Dr. McHugh, stated:

DR. McHUGH: A bureaucracy built by the psychiatric choice of a DSM-based approach, and the linkage that they could have with powerful drug companies.

It took only a few years to build that bureaucracy, and a coherent attack on it could I think bring it down, especially if you could show -- and we can show -- that an approach to patients -- that it takes a little more time, but it is bottom up rather than top down -- will not only do better for the patients, but do better for research. Ultimately right now our research on depression is incoherent.
Is he trying  to be insulting?   And exactly whom is he proposing that we attack?  Is this an example of our government's new policy of preemptive attack?  Is there some sinister cabal conducting weapons of mass diagnosis-related program activities?  And what is his agenda when he says that our research on depression is incoherent?  He was not attending a conference on depression.

If you look at the history of psychiatry, you see that the trend has been for doctors to spend less time with patients.  Dr. McHugh is correct, that we should spend more time; and we should construct a diagnosis from the bottom up, meaning that you start with a comprehensive review of the history, conduct a survey of the biological, psychological, and social factors related to the presenting complaint, establish a list of possible diagnoses, then generate and test various diagnostic hypotheses, all before initiating treatment.  If the Bioethics Council wants to recommend that someone come up with the funding for that, I'm all for it. 

Do they ever get to the point of making such a policy recommendation? No.  Near the end of the conference, Dr. Diller states:

I think -- and I don't know how long it is going to take, but this disability-driven diagnostic driven system, everyone on the outside is pretty much agreeing that it is crazy, but no one seems to be able to stop it.

I would like if we can reach some impressionable Congressional or Executive minds with that kind of solution, and begin to work on it, because DSM-V is coming, and it is not going to be very different.

It's can we subvert -- you know, the DSM-V may have some value, but there is some real pernicious aspects to the DSM-V, which is mostly driven by service and dollar values.

If we can alter the need for that kind of diagnosis, then let them have their DSM-V for research purposes. It may be a useful document on some level for those purposes, but not for clinical decision making.

The DSM is not a "disability-driven diagnostic system."  It is true that each diagnosis has a severity criterion, such that a patient cannot be given the diagnosis unless the problem leads to substantial distress or impairment.  The purpose of the severity criterion is to prevent people from getting a diagnosis for a trivial problem.  But the point of the diagnostic system is to define the characteristics of the illness, not to make a determination about disability.  And what is this business about subverting?  I agree we can  "let them have their DSM-V for research purposes".  But to discount it as a tool for clinical decision making is just plain dumb.   DSM has flaws -- everyone who uses it knows that and does not need to be reminded of the fact -- but right now there is nothing better.  Yes, DSM-V is coming.  That is the point.  We know the diagnostic system is flawed.  That is why it is being updated continuously.  We even know what some of the flaws are.  They are documented in the book, A Research Agenda for DSM-V.  (2Mb PDF download).  Do they end up making recommendations for a research effort to find an alternative diagnostic system? No.  They just sit around and criticize the existing system.  They talk about "subverting" it, but doesn't actually do anything about it. 

I never did find out more about what Dr. Kass himself has to say about psychotropic drugs.  I can tell you that, based upon what Dr. Greenwood reported, his notions are similar to those that I had as a college junior.  However, my opinions have evolved since then.  It appears that his have not. 

The Bioethics Council members make profit from private sales of their public work, incorrectly cite scientific research, criticize well-meaning physicians without offering anything better, and wind up their conference with no useful recommendations.  All at public expense.  This is ethical?