Friday, October 01, 2004

Models for the Neuroethical Debate in the Community

By: John Timpane Ph.D.

A “deliberative” citizen-forum model, as opposed to debates, would be a powerful way to help nonscientists discover and consider the ethical issues and policy ramifications of the coming neuroscience revolution. Participants may then communicate the results of their deliberations, in the form of specific policy recommendations, to guide scientists in their research and political leaders in writing future laws concerning that research.

Citing a line from ancient Sanskrit wisdom, “there is nothing in the world so purifying as knowledge,” John Timpane urges the adoption of a roots-up process by which citizens, in organized forums, deliberate critical neuroethical issues. The author suggests several ways such a deliberative process might play out with some top neuroethics issues —enhancement, stem-cell research, and the use of “brainprints”—to show how the citizen groups might form consensus recommendations. “We have time before the wave of the new neuroscience crests,” he writes. “Best to discuss it now before the wave is upon us.”  

In the fourth chapter of the Hindu text, Bhagavad-Gita (The Song of The Blessed One), you can find what may be the most consoling sentence ever written: “In truth, there is nothing in the world so purifying as knowledge.” 

I believe that, but not everyone does. Some behold the onward rush of neuroscience and wish to go slow in territory so intimate, so long forbidden. Our minds; the patterns of our choices; our cherishment of memories; our soulprints—who would not say, “Go carefully, if at all”? 

In truth, however, nothing in the world is as purifying as knowledge. Not only does it often improve life (even nuclear technology, the great counterexample, has benefited billions more than it has harmed), but also it purges us of delusions and prejudices born of ignorance. Knowledge, so far, has created more than it has destroyed. 

But many are the uninformed or the mal-informed; many are scared. That creates an ideal arena for the opportunist politician or leader (of any party) who would create public policies that tie scientists’ hands and prevent the very advances that may most purify. We’ve seen such short-circuiting before. In the reproductive revolution, state legislatures obstructed as many reproductive choices as possible with labyrinthine legal hedgeworks, often bypassing a fully democratic debate. Today, with early manifestations of the genomic revolution, we are seeing devious (and hilarious) government policies on stem-cell research and government “peer review” of federally-funded science. Here again, leaders have sidled past the obligation to hold a fully inclusive social debate. Not that the damage can’t be healed; of course it can, but healing will take years and cost so much that many will decide not to try. I would hate to see the same thing happen with the neurobiological revolution. 

The great project facing neurobiologists and neuroethicists is to mediate an informed public discussion of coming inventions and therapies. This has to be, I think, a local, roots-up process, not top-down. To short-circuit the short-circuiters, Americans must deliberate among themselves on the great issues raised by neuroscience and the values citizens wish to see expressed in public policies regarding our coming power to map, read, and manipulate the human mind. In this essay, I’d like to suggest some forms such a deliberative process might take and give some examples of how the issues might be framed. 

It’s important to acknowledge the efforts already under way to get just such a deliberation started. In its offices in Washington, London, and elsewhere, the Dana Foundation has hosted discussions ranging from formal debates to pub lunches. And I was thrilled to be present when the David A. Mahoney Society at the University of Pennsylvania announced the inception of the Eliot Stellar Program in Neuroscience and Society, which will seek to encourage discussion of neuroethics in the community.

I speak best, however, from my experience as the Commentary Page Editor of the Philadelphia Inquirer. For years, Editorial Page Editor Chris Satullo, along with Harris Sokolow of the University of Pennsylvania, has been conducting what we call Citizen Voices forums. We often do a round of Citizen Voices when there is an election or a public issue—in the Philadelphia area, two such issues have been health care and urban revitalization—of especial moment. This is a deliberative process, not a debate, a crucial distinction I will explain. Our model is the one created by the National Issues Forums Institute (www.nifi.com) with help from the Kettering Foundation. 

We’re a newspaper. It’s just such local, grassroots organizations—churches, schools, local media outlets, and social groups—that must initiate these discussions. We announce the forums to our readers and invite them to participate. If, in the makeup of the participant pool, we see an imbalance in gender, age, income level, educational or professional background, or ethnicity, we try to redress it, throwing out the call throughout the community. Once a pool of respondents is established, we hold introductory meetings at which we explain the subject, the process, and the goals. 

Imagine, then, a pool of participants, say, 200 people, in eight community-based groups of 25 apiece. They will come together for some parts of this process, but most of the work they will do in their own groups. This is not just an exercise; it is the very work of citizenship. 

GETTING STARTED

Our citizens will have a concrete goal: to communicate the results of their deliberations, in the form of specific policy recommendations to guide scientists in their research and to guide political leaders in writing laws concerning research. Neither scientists nor leaders can be self-regulating; both need the advice of those they serve. 

The object is not to turn the participants into experts, but rather to give them enough shared knowledge that they know what they want to argue about. 

Experts in neuroscience are important in this process, however: they wil educate the participants and act as consultants or referees during discussions. Neuroscience is one of the most complex realms of human understanding, befitting the human brain, the most complex thing ever beheld. Thus, any citizens’ forum on neuroscience would begin with an introduction to the current state of knowledge and research. The object is not to turn the participants into experts, but rather to give them enough shared knowledge that they know what they want to argue about. We also would need something like the “issue books” distributed by the National Issues Forum Institute, presenting nonpartisan overviews of issues and possible public responses. In the expert’s second role, as consultant and referee, he or she will consult with the moderator to extract ideas or direct discussion and adjudicate matters of fact. 

REASONING TOGETHER

Our citizens meetings tend to resemble town meetings, but they could take other forms. A moderator directs and regulates discussion; he or she notes important points on the board, elicits discussion of alternatives, risks, and benefits, and keeps the discussion fair. 

What our now-informed citizens are doing is deliberating the issues. In the words of the National Issues Forums guidelines, “participants use discussion to discover, not to persuade or advocate.” Having acquired a common fund of knowledge, they now have to identify the salient issues, discuss as many view points and options as they can, and set out these deliberations in some formal fashion. 

The aim is not to see which side “wins”; that’s what happens in a debate, but it is not what’s happening here. The object is to create a chart of the range of policy options in each case, considering all sides and the consequences of all options. In our actual meetings, people do argue and debate, but as different opinions arise, the moderator notes them on a blackboard or chart and urges the group to follow those opinions together to their logical conclusions. 

Here are what I imagine our citizen deliberators would care most about and the kinds of valuable contributions they would make to major neuroethical issues. 

Deliberation #1: Stem-cell research

The moderator might begin deliberation by presenting the group with a forthright position statement: 

We should give scientists unlimited freedom to use embryonic stem cells to explore ways to treat Alzheimer’s disease, Parkinson’s disease, and other neurodegenerative disorders. 

The moderator then asks the group to brainstorm benefits and risks of the proposal. In that discussion, the participants identify more than a half-dozen credible arguments on both sides of the question. On the plus side of the proposal are: 

  • Finding treatments for these diseases will be of incalculable value to the human race. That in itself justifies the use of embryos.
  • It’s efficient. Embryonic stem cells are so far most promising for this research, and using them will allow us to achieve results more quickly. 
  • Using embryonic stem cells now will allow us to create new stem-cell lines, meaning that someday we won’t have to rely on embryos left over from fertility treatments, as is the case today. Using embryos now will allow us to stop using them sooner rather than later.
  • It better honors these embryos to use them in such research than to throw them away.                        

Looking at the proposal from the standpoint of risks, however, they find an equal number of arguments the other way. These are: 

  • In treating human life (the embryo) as a means to an end, such research erodes respect for human life.
  • This research starts us down a slippery slope. If we can use the embryo for research, what about the fetus? What, eventually, of the adult? Will we have a world in which women sell their embryos to the highest bidder? And at the end of the slope lies the frightening specter of human cloning.
  • We would sacrifice values for “efficiency.” Use of embryonic tissues may get us to “pay dirt” fast, but at the cost of trampling on essential human values.
  • We don’t know whether this or any other research will find any cures at all. The end is too unsure to justify such radical means.

The moderator now asks the group to look for common ground as a way to make a policy recommendation. It might seem little common ground exists here, but it does emerge. Here is what the group recommends: 

A closely monitored pilot project of some predetermined length—5 years? 10 years? —might be tolerable. But it must take place under the strictest supervision, with tight controls on the sources and numbers of viable cell lines (and they must be truly viable), with frequent review and reconsideration. If this pilot program operates for a reasonable time without success, we should have the option to shut it down. 

Deliberation #2: The Personality Makeover

In another approach, our citizen-deliberators read a fictional dialogue. They are asked to determine the values each side treasures most and formulate a common ground. Instead of a proposed policy, this discussion might result in ethical guidelines that could underlie policies. 

Smith and Jones learn that drugs or surgery can now cure people of various disorders of behavior: sociopathic violence; depression; compulsive gambling; overeating; uncontrollable temper. Jones thinks this is a great idea. “This is a miracle that improves human life,” he says. “For thousands of years, humankind has been burdened by these afflictions, and now there is a way to dispel them. This will allow us more time to seek even higher levels of perfection for ourselves. It’s an incredible contribution to the history of our species.” 

Smith is less enthusiastic. “What kind of world are we creating?” he asks. “These people are not learning self-control; they’re having it implanted. They’re not better people through their own efforts; they took a pill to make their limitations or issues go away. They avoided their problems rather than solved them. I’d rather live in a world in which individuals, taking full responsibility and through their own authentic agency, lived through their problems and worked to solve them. Pain, risk, and failure are essential to the formation of the human person, and if we deny free play to bad luck, difference, and reasonable suffering, we deny ourselves some of our greatest opportunities to grow.” 

Now the moderator directs the group to brainstorm a list of values for each speaker. The ideals they credit each with championing are: 

Jones: improvement of our species; efficiency; technology; knowledge; easing of pain; usefulness; new horizons; discoveries and breakthroughs. 

Smith: self-control; self-determination; active solution vs. technological enhancement; responsibility; authentic agency; value of lived experience; constructive value of pain, risk, failure; nobility; free will. 

The group must now look for common ground between the two sets of values. Smith might agree with Jones that on-demand relief of all pain and risk would not necessarily be good. They might agree that needless, intractable pain and incurable disease—misfortunes that prevent any authentic choices or learning—do merit the full application of new technologies. And both might agree that society must prevent or mitigate unfair advantages for the wealthy. 

Deliberation #3: Felons and the Brainprint  

It’s 2075. Congress just approved a federal law under which felons automatically forfeit the privacy of their brainprints—maps of the characteristic cognitive and affective operations of a person’s mind. If you are convicted of any felony, your brainprint goes into a data base closely guarded by the government. Your print is compared with those of other felons to determine patterns of behavior and probability of recidivism. Some members of Congress want to publish the brainprints of felons on the Internet. What benefits and risks has our future Congress created? 

Our deliberators will see some obvious benefits to the legislation: It can help law enforcement track behavior of criminals to predict and prevent crime; distribution of the brainprint could be a fitting punishment for severe crime, equal to the permanent forfeiture of the right to vote in some states. 

But the risks are just as clear. Although the Constitution contains no language defining the right to privacy, a very strong traditional presumption of it exists in American life. That assumption exists in the Third, Fourth, Fifth, and Ninth Amendments of the Constitution, as well as in Supreme Court decisions such as Roe v. Wade. A person’s brainprint would be tantamount to his or her soul. Only extremely rarely should such intimate information become anyone else’s property; others should have access only with the fully informed consent of the owner. 

Some would see grave risks in allowing forfeiture of brainprint to become a means of punishment. It might give too much power to the state. Unscrupulous officials might manipulate people with this powerful information. And what of unauthorized sharing of the information? And would not brainprints create prejudice, encouraging the fallacy that the existence of a brain pattern always predicts and determines the conduct of the person? Some would argue that distribution of a brainprint would unfairly limit the felon’s access to health care and other social goods. The predictive power of brainprints might create pressure to institute pre-emptive punishments à la Minority Report

Taken all by itself, the brainprint question is pretty simple, and the deliberators will have a quick and clear recommendation: 

Forfeiture of brainprint should never become a means of punishment. And punishment should never be pre-emptive; such a notion, even if technology were to make it possible, is unconstitutional and unjust. Actual deeds, not potential deeds, are the only fitting subjects of correction. The future must always be allowed to play itself out. As tempting as it may be to “head off crime,” we should avoid injuring human rights simply for the sake of efficiency. 

The brainprint will drive the discussion into other realms. Participants will consider commercial ramifications, as in this scenario: Congress has approved a law that allows health-insurance companies to charge higher premiums to, or refuse to cover, people who will not allow access to their brainprints. What benefits and risks has our future Congress created?  Answering that question will force discussants to balance the rights of entities in a free-market system against the need for privacy and health care. 

But the discussants now have pulled the thread that unravels the sweater. Inevitably, they will trend toward the largest philosophical issue of all: What if science eventually “explains” consciousness? The potential of that Great Explanation raises quandaries familiar to neuroscientists but not yet familiar enough to citizens. If we want to arrive democratically at good policy for neuroscience, we must encourage discussions at this level. Time and again in our Citizen Voices projects, we’ve seen that supposedly “lay” people are good at turning philosophy into policy. 

Some will feel that the Great Explanation will detract from the magic and dignity of human life, that being explained somehow diminishes the human being. Some may feel, with understandable dismay, that it does away with free will and replaces God with prejudice and totalitarian control. On the other hand, the Great Explanation may lead to tremendous advances: We can lay hands directly on the sick spirit. Explaining my soul does not change the fact that my life is singularly mine, and gives me more, not less, reason for wonder, more, not less, reason to believe if I wish. 

And what is free will? The mind’s reflexive assumption that its choices are not directly constrained. Will the Great Explanation really impinge on my mind’s assumption of its self-sufficiency? A question to ask, because, far from being conceptual or abstruse, someday our answers will be embedded in policy. Discussants likely will require that the Great Explanation never be allowed to interfere with the progress of democratic institutions or with the individual’s right to self-determination. The more we understand consciousness, the clearer it will be that such interference is evil. 

The great desideratum here is a set of sensible overarching recommendations: 

  • Explanation must never become legislated into compulsion. The potential for abuse is real; act now to head it off. Leaders must not be allowed to argue that, because consciousness has been explained, the sacredness or dignity of the human person, or that person’s rights and obligations to others, now have been qualified or diminished. Democracies can have no place for systems based on categories of consciousness. Generations before these innovations actually exist, we should stipulate that the Great Explanation should not affect the basis of democracy.
  • Preserve the social contract. Safeguard human rights, especially for the less privileged, the elderly, the old, the sick, the less talented, and anyone who can’t keep up with the pace of innovation. Government must always ensure a “sacred minimum”: a stipulation of common equality for everyone no matter his or her circumstances. Granted, the social contract is based on a pretense, but that’s just an interesting irony much overborne by the necessity of social organization. We must continue to pretend that all people are created equal, even as evidence accrues that they are not.
  • Legislate vigorously against prejudice. No one’s bad luck (a genome that codes for a less-excellent or less-adaptable consciousness) should be held against him or her.
  • Ensure equal access and opportunity. That includes equal access to education and social services, and an equal chance to succeed or fail within reasonable tolerances. 

TIME TO FACE THE NEUROSCIENCE REVOLUTION

In applying the deliberative model to neuroethics, little may go the way I have imagined it. But the model holds great promise in helping citizens discover and discuss the ethical issues and policy ramifications of the coming neuroscience revolution. In an article I wrote earlier in 2004 in the Inquirer, titled “Making Up Our Minds,” I argued that the time couldn’t be better to begin the process. Best to start now before the wave is upon us. 

I look forward to being part of that discussion in my community. My newspaper is looking for partners in the effort; we’re lucky we have so many universities and medical schools nearby. We may pick a nearby year—say, 2006—and make it the Year of Neuroscience. May the same happen in many other places. Scientists need the guidance, and nonscientists need the awareness. An exciting, challenging, possibly hazardous time is coming. Like the warrior-archer, Arjuna, in the Bhagavad-Gita, we are nearing a knowledge through which “you can behold the entire universe.” But, like Arjuna, who could not face the battle, unless we have prepared for it, we may never enjoy the fullness of that purifying force.



About Cerebrum

Bill Glovin, editor
Carolyn Asbury, Ph.D., consultant

Scientific Advisory Board
Joseph T. Coyle, M.D., Harvard Medical School
Kay Redfield Jamison, Ph.D., The Johns Hopkins University School of Medicine
Pierre J. Magistretti, M.D., Ph.D., University of Lausanne Medical School and Hospital
Robert Malenka, M.D., Ph.D., Stanford University School of Medicine
Bruce S. McEwen, Ph.D., The Rockefeller University
Donald Price, M.D., The Johns Hopkins University School of Medicine

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