Logo della Fondazione Giannino Bassetti

FONDAZIONE GIANNINO BASSETTI

Innovation is the ability to achieve the improbable

Intestazione stampa

Jeff Ubois

Jeff Ubois' blog in FGB web site

Home > Jeff Ubois > Deepening The Public Conversation Around Bioethics (part 2)

Deepening The Public Conversation Around Bioethics (part 2)

by Redazione FGB [1], 7 July 2008

(An interview with Dr. Thomas Murray [2] - ...continues from the previous entry [3])

Ubois:
Great, I really wanted to ask you about cognitive enhancement. A friend of mine just came from a global meeting of international engineers, and there were large delegation from two companies, and both delegations were talking about how many people in the company who were attending this meeting had gotten prescriptions for Modafinil. They're doing these crazy work weeks, and Modafinil is becoming part of the culture there. And there's that same arms race. It's $30 for every four hours, and they say it's just like coffee, but without the jitters. And I don't know if any of that's true. I don't know what the long term effect -- I don't know if anybody knows what the long term effect of that might be.

Murray:
I haven't seen it.

Ubois:
It's made it right into this sort of mid-level to senior engineering culture now.

Murray:
Right. That's no surprise to me whatsoever. Many years ago I was trying to explore the limits of using sports as a model for enhancement, the ethics of enhancement. So I created another hypothetical, not quite cognitive, but close. In this case a neurosurgeon observes that a common drug, a pretty harmless kind of drug that doesn't seem to have any really major negative side effects had one interesting side effect. That is that the natural tremor in the human hand was very significantly diminished for a few hours when you took this drug.

Ubois:
He's got to take it.

Murray:
Well, and so the neurosurgeon -- and then being a responsible physician, surgeon and scientist, the neurosurgeon first of all tries it himself, and it seems to work. And then he conducts a randomized double blind clinical trial, and the evidence is absolutely conclusive. Those neurosurgeons who took the actual drug versus a placebo had significantly better results. Their patients had significantly better outcomes. Fewer complications during surgery, more rapid recoveries, everything. And so then the person in this world that you care for the most, and it could be yourself, could be your spouse or child, parent or whoever, needs exactly one of these very delicate neurosurgeries, and you go to a neurosurgical practice and there are two surgeons. The first one takes the position espoused in the President's Bioethics Council. They look beyond therapy and say, well, this would be unnatural and it's not an expression of my true human capacities, and so I don't use drugs when I operate. The second one says, of course, I take the drug. My patients do better. Which one do you choose? I choose the second one. So how is it that one can in an intellectually consistent manner be opposed to performance enhancing technologies in sport and yet embrace them in neurosurgery?

Ubois:
Well, one is about game rules, and the other is about a different kind of outcome for other people.

Murray:
Yes, in the case of sport -- in both cases, you want to look to what gives that particular human practice its meaning and significance. Some people argue for the complete triumph of the performance principal in sport. That all that matters is maximum performance. I think that's a difficult position to maintain. If you look at the realities of sports activity, it would be really tough to make that work for a variety of reasons. But if sport really is about taking whatever your natural talents are and honing them, perfecting them to some level, then things like anabolic steroids, EPO, etc., seem to distort that relationship between your abilities and the way you perfect them. They distort the results from that relationship. So it seems to defy and somewhat sully what's important about sport. In neurosurgery, the point of neurosurgery is to make patients better. If you can find a technology, whether it be neurosurgical instruments, neurosurgical procedures or a relatively harmless short-acting drug that you can take that improves the patient's outcome, then of course you want it. In the case of neurosurgery, this performance enhancing drug promotes the goals of the practice. In sport it undermines the goals of the practice. That's the difference in a nutshell.

Ubois:
Can we tie this back to the Bassetti Foundation set of concerns? It seems like we're talking about innovations that are in between the really early conceptual phase, and they come, largely, after the research questions have been answered and a little bit before they really hit the market.

Murray:
Actually, I think the picture's a little different. For enhancement by medical technologies, which is what I know, almost never will the technologies be identified initially as enhancement technologies. For one reason, the FDA has no structure for even thinking about a drug that would be proposed as an enhancement drug. So they will be developed for a therapeutic purpose, but people will very early on figure out that they can be used for enhancement purposes. EPO is a perfect example. EPO was developed and approved by the FDA for the treatment of chronic anemia. It took bicyclists a nanosecond to figure out that more red cells might be useful to them as well.

Ubois:
So Modafinil was for people with sleeping disorders.

Murray:
The market for some enhancement technologies, and Modafinil may be a case in point, might be significantly larger than the therapeutic market.

Ubois:
So then, as a practicing physician, if somebody comes to you and wants the drug essentially for its side effect?

Murray:
The control of these technologies is going to take place at many levels. For example, there will be national or even international level for things like drug approval processes. So that's one level at which -- and by control, no one should delude themselves into thinking that we mean perfect control -- we're talking about various levels at which you can affect behaviors, but you're not going to stop all behaviors that you wish to stop. That's ludicrous. So you'll have international and national rules and regulations, etcetera. Then you will also have professional self regulation.

Ubois:
Codes of practice.

Murray:
,The FDA approves a drug like EPO or Modafinil for certain purposes, but once it is on the market, a physician may legally prescribe it for so-called "off-label" uses. Now, there are professional codes of conduct and expectations, and drug companies are prohibited from promoting off label use, although they often find very clever ways of at least letting doctors know about these other uses. The most important response to enhancement technology isn't going to be at the level of the legislature. It's not going to be even necessarily at the level of professional self-regulation. It's going to be with the conversation we have as a national and international community about the wisdom of certain of these practices. I've begun many a talk about enhancement technologies by asking if anybody had used cognitive enhancing drugs today.

Ubois:
More people should be raising their hands than do, I'll bet you.

Murray:
The drug I usually have in mind is caffeine. Absolutely, it's a pretty non-specific one. There's no evidence that it's harmful. You can become dependent. And you can at least accommodate to it, so that if you're deprived of it, your body will [suffer].
We have some experience with drugs that have some impact on cognitive enhancement. What will happen, as seems virtually inevitable, when more powerful and specific cognitive enhancing drugs come along?

Ubois:
There are five million boys in the country that are either on cognitive enhancers or zombie mind control drugs, depending on how you want to describe them--Ritalin and Adderall.

Murray:
Right, and Modafinil is not unknown among college students. I'm sure the use of cognitive enhancing drugs is not unknown around law firms. Imagine you've just been hired as a new lawyer fresh out of law school, and you're an associate in the firm of Harass, Devour and Milk. The managing partner comes out and says welcome to the ten new associates: "We want you to know that 5 years from now when we decide who becomes a partner, 7 of you will be asked to leave, and in the meantime we'll be watching your work very closely. Of course, we would never require our employees to use cognitive enhancing drugs. There will, however, be an ample free supply available in the coffee room. And we'll be watching your work very carefully."
The message would be clear and parallel to what goes on on the playing field with anabolic steroids; the same dynamics will be at play in these different settings if these drugs really are effective, and if you are in a highly competitive environment. So I expect under those circumstances there would be a lot of pressure to use cognitive enhancing drugs. Now will it on the whole be an acceptable phenomenon? Will it be destructive? One thing we have to be mindful of is that the hypothetical enhancing drug with no undesirable side effects probably won't exist. So all these drugs will carry some kind of sting in the tail. And we need to watch very carefully to make sure that those adverse effects of the drugs don't cause more damage. So that's one point.

Ubois:
And there is a long history of drug use in the arts, W.H. Auden and Philip K. Dick were famous for taking amphetamines…

Murray:
Well, again, you look at the practice. I mean, no one thinks that a work of art is lessened if the author of that work of art smoked dope or used alcohol so, in that sense, it doesn't undermine the significance of that sphere of human endeavor in the same way as it does in sport. But we still want to ask about the human cost. We want to ask whether this is something we should encourage and embrace? Is it something we should tolerate? Is it something we should do our best to prevent? Those questions will always need to be asked.

Ubois:
In these cases that we're talking about, it seems like the innovator's responsibilities are made more difficult by market demand. The choice to use an enhancement technology ultimately comes down to an individual.

Murray:
Well, of course, individuals choose whether to use or not. But those choices don't occur in isolation. They occur partly because of market demand, partly because of personal goals, partly because of one's sensitivity to the interests of others.

Ubois:
The neurosurgeon is all about the interest of others.

Murray:
The athlete who chooses anabolic steroids to try to gain an advantage is actually quite hostile to the interest of his or her fellow athletes, right? So that's a socially negative action, where for the neurosurgeon it's a socially laudable action -- it's a benefit to others. The surgeons may derive little or no benefit him or herself. You could argue that maybe their malpractice insurance will go down a little bit. It may or may not. But really they're doing it to help their patients. So that's a socially praiseworthy activity. Society ultimately sets the context in which those decisions are made, and ultimately individuals choose to use or not, but their decisions are shaped and their decisions have implications for persons way beyond themselves. So, I don't want to pull the individual out of that much larger context.

Ubois:
I'm hitting a brick wall on the responsibility in innovation question around that, though. Are there some mechanisms to assess it? Or is our responsibility to foster good public dialogue around enhancement now?

Murray:
That's a very important question. One thing that could be done in the drug approval process would be to give explicit consideration to the likelihood of off label uses. Let's imagine super Modafinil. What if there is a very hypothetical, but extraordinarily powerful drug that has the same impact, even greater impact than Modafinil? You could stay awake for weeks at a time, no side effects. However, the number of people who actually have the disease for which this would be the indicated treatment worldwide is 11. Well, no rational drug manufacturer is going to develop a product that has a market of 11 people. If they're developing it, it's because they see this much wider off label use market.

Ubois:
There's inversion of therapy and side effect in that case. The side effect is that it cures the 11 people.

Murray:
But the real intent is to market it -- yes, so one thing we could do differently is to insist that the potential for off label use be integrated into consideration of the drug approval process. That doesn't mean you would turn down a drug just because it had some socially undesirable off label uses, but it would now become explicitly a part of the drug approval process.

Ubois:
And you could regulate use for different purposes.

Murray:
If you regarded certain uses as ultimately destructive and problematic, then you could apply pressure at the governmental level and at the professional self-regulation level.

Ubois:
If our society was so good at rational drug policy. . .

Murray:
Yes, we do so well with that. I'm on the board of an organization called Physicians and Lawyers for a National Drug Policy, which is an effort to create reasonable, rational drug policy .

Ubois:
700,000 people in jail over drug laws.

Murray:
But all that -- all the laws and professional, those levels of control really depend upon. . .

Ubois:
A public sensibility. . .

Murray:
A public sensibility of what's defensible, what's not defensible. What makes sense, what doesn't.

Ubois:
Well, maybe that is responsibility.

Murray:
I think that is. I think that's what we try to do. That's what the center was founded for. We've talked to policy makers and we've talked to journalists, but really the goal is to deepen and enrich the public conversation and understanding about these issues. That's extraordinarily difficult to do, and it's easy to despair about the possibilities of accomplishing it, but I don't think we have an alternative. We have to make that effort. And sometimes hope arises.

Ubois:
I wanted to ask you about another hypothetical. Chris Peterson, who is at the Foresight Institute, says there's a compromise around enhancement that she thinks can be hammered out, which is to let people who have reached the age of majority do what they want, but let's leave the kids out of it. Maybe, you know, I know you have a piece on corrective surgery on kids up on the website. I was looking at that. So maybe already there's cases where the question of enhancement is going to be inescapable, but I thought that was an interesting -- she's kind of proposing a truce between Christians and trans-humanists.

Murray:
Certainly there is agreement about the distinction between the mature and the non-mature person and the use of enhancement technology. That's a slam dunk. But there are people like Julian Savulescu who argue you have an obligation, a moral duty to enhance your child, if you can. So he wouldn't accept her truce. We're friends, but I think he's completely wrong, and he thinks I'm completely wrong. So that's not nearly going to be enough. There's no question that she's got a very important point there about paternalism and autonomy.

Ubois:
Yes.

Murray:
There's one thing you should know about us, because there's been the most dramatic development probably since the founding of the Center, has just occurred this year, the bioethics and the public interest initiative, which we have undertaken, did you hear about this?

Ubois:
No.

Murray:
Since the beginning, the Hasting Center's primary target audiences have been scholars across many different disciplines, and clinicians such as doctors, nurses and other people in the health professions. Also from the beginning, the audiences interested in us were broader than that, most significantly policy makers and journalists. Each year we receive hundreds of media inquiries. The people who contact the Center tend to be journalists not so much looking for a quick soundbite. The Center's reputation is, as you know, very, very even handed, very committed to quality and generous in its references to the work of others. So we'll often send a reporter on to somebody else. We may or not talk to them, but we also say you really need to talk to A, B and C because they are the experts in the question. We have this reputation, and journalists confirm this to me when I talk to them. Policy makers call us for various things, formal advice, background information, and the like. Some years ago and I'm compressing a longer story, we took a look at the center and asked what can we distinctively do in this world, given that the world has changed since our work began decades ago. Two things in particular had changed. Number one, the issues that we've been championing since our birth are now getting much greater public attention, and we've confirmed that by a variety of methods. The second trend is that there are many more places like the Hastings Center. Not quite like us, but many more places interested in the questions at the heart of our own work. So the question was what can the Hasting Center do that takes its distinctive strengths and assets and makes the largest possible contribution to whatever was needed in the larger world? My sense is the public discourse about these issues has, if anything, gone a bit downhill, in part because partisan organizations have gotten into the fray. Bioethics has now become a part of the political discourse, which means that it has become prey to all the sort of spinning and sound biting that people are expert in in that realm, and that's anathema to the Hastings Center.

Ubois:
"My opponent, the baby killer..."

Murray:
Yeah, right, that's exactly it. That's exactly the opposite to what we've got here. We don't get the extremists. We don't get the sound biters. We seek thoughtful voices across a spectrum who are willing to engage and listen. We're been appalled at some of the recent public conversations over issues in bioethics. I went to the Ford Foundation, and over 18 months of conversation with the President of the Ford Foundation, shaped an idea, submitted a proposal, and the Center received the biggest grant in its history to launch an initiative on Bioethics and the Public Interest.

Ubois:
Congratulations, that's great.

Murray:
Beginning officially earlier this year, we are building the capacity to do bioethics in the public interest. And so, to the core audiences of scholars and clinicians, we have added three audiences, policy makers, journalists and opinion leaders. We are continuing the scholarly research we've done in the past, but we are also going to reach out systematically and thoughtfully to these other audiences.

Ubois:
Authoritative information in the medical realm is really hard, but there's a lot of people that are wrestling with that question. And even Google has given up. I mean, they've hired medical people who were doing hand coding of results. They've never done that in any subject area before.

Murray:
Now that we have this public interest initiative, we'll take some of the products we've produced and we'll have a version for scholars, but we'll have other versions for policy makers and journalists. We'll create new events. And we're developing a bioethics briefing book for the 2008 campaign.

Ubois:
That is a good idea. You can launch a lot of new ideas around the campaign.

Murray:
We're doing it on the model of the Alliance for Health Reform, a respected non-partisan group in Washington…We've embraced these new audiences, and we're trying to have a more direct impact on the policy discourse and the public discourse through these measures. So far the uptake has been phenomenal. We have active conversations with a number of nationally prominent news organizations that we expect will lead to more formal relationships.

Ubois:
I'll look forward to seeing more in print then. Thank you so much for your time and thought.

Show/Hide links in this document

Links in this document:

  1. 1] /schedabiografica/Redazione FGB
  2. 2] http://www.thehastingscenter.org/people/profiles/murray.asp
  3. 3] /en/ubois/2008/07/deeping_the_public_conversatio.html
CC Creative Commons - some rights reserved.
Thomas Murray
Articles by:  Redazione FGB
Articoli
Search by:
Search video by:

- Mailing list Subscription - Cookies Policy -

RSS Feed  Valid XHTML  Diritti d'autore - Creative Commons Gruppo Fondazione Giannino Bassetti in Facebook Gruppo Fondazione Giannino Bassetti in Linkedin Segui la Fondazione Giannino Bassetti in twitter

p.i. 12520270153