Panel Session: Informing Genetics Policy:

Panel Session: Informing Genetics Policy:
The Future of Public Participation
May 16, 1998
10:15 - 11:45 AM

Toby Citrin: Linda Wertheimer is the anchor of National Public Radio’s "All Things Considered." She will be moderating a panel discussion for us today on how the media is informing public opinion.

Linda Wertheimer: In preparing for today, I am reminded of Senator Howard Baker’s comment that Watergate was a question of "What the people know and how they know it." We will be conducting a forum or "guided discussion," meaning that it will not be a discussion from the "top down." Today’s panelists are:

Daniel Yankelovich, President, Public Agenda Foundation, Chair, DYG, Inc.
Eleanor Singer, Research Scientist, Survey Research Center, University of Michigan
Rick Weiss, Science and Medicine Reporter, The Washington Post
Marian Gray Secundy, Professor, Howard University School of Medicine, Department of Community Health and Family Practice, and Director of their Clinical Ethics Program
Bonny Dore, President and CEO, Bonny Dore Productions, producers of made-for-TV movies
Bruce Jennings, Executive Vice President, The Hastings Center

Bonny Dore: I will be giving you a taste of the media serving up science. But first, what does the media know? Who knows and when? The media are the creators of science fantasy, fiction, and fact in Hollywood. They produce a world of ideas, emotions, and characters. Most important to the producers is content – that makes people resonate. Having the will to create is also important. Today I will be showing you our world of genetics through the cultured filter of the media.

[The conference audience viewed an audio-visual montage by Bonny Dore Productions of still slides and genetics-related movie segments.]

Still slides:
Book front cover: Robin Cooke’s "Chromosome 6"
Magazine front covers: Time "Infidelity: It May Be In Our Genes," Insurance Magazine, U.S. News and World Report "Heredity," cloned sheep - Dolly
Movie and TV scenes: GATTACA, Jurassic Park, X-files, Twins, Muliplicity

Film segments:
Jurassic Park -
The scene opens with Richard Attenborough making Sam Neill and Laura Dern an offer they can’t refuse to fly out to Jurassic Park. When face to face with a clutch of brontosauruses, Sam Neill is spellbound and asks, "How did you do this?" The archaeologists are brought to the heart of Jurassic Park where they glimpse the process used: extraction of billions of DNA strands from a drop of dino blood sucked by a prehistoric mosquito now trapped in amber, cloning of the dino DNA, use of gene sequencers and virtual reality machines to fill in the gaps in the dino DNA using the DNA of a frog, and the actual hatching of a baby dinosaur. The segment ends with the prophetic words of Jeff Goldblum: "Don’t you see the danger? The problem with scientific power is that there’s no discipline to attain it and no responsibility for it. You have patented and packaged this procedure as fast as you could."

PBS Nova, "The Real Jurassic Park" -
In this PBS special, various authorities are asked whether what happened in the movie Jurassic Park could really take place. Michael Crichton who wrote the book feels it is a fascinating idea, and states his belief that it might be possible to bring extinct animals back to life. Geneticist Stephen O’Brien refers to machines that can make stretches of DNA. He feels that in 50-200 years scientists will be able to synthesize chromosomes, but that we are not there yet.

GATTACA -
In this introductory scene from GATTACA, the movie’s main character, Jerome, describes the future "state of the art". Scientists will be able to determine a person’s life expectancy from birth together with the exact time and biological cause of their anticipated death. Persons like the main character who are conceived naturally will come to be known as "utero’s" or "faith births," perceived as "in-valid" births. Those conceived through in-vitro techniques will be called "vitro’s," viewed as "valid" births. The main character boasts that his genetic quotient is "second to none," but actually this admission is one of duplicity because he has cosmetically borrowed the DNA of another person, a onetime star swimmer named Eugene, to appear as a vitro, his goal being to gain clearance aboard a spacecraft headed for Jupiter. In truth, he was born Vincent Anton, a "de-generate" diagnosed with the potential for attention deficit disorder and depression with a life expectancy of 32 years. Though with these genetic credentials he would have no means of making the flight other than by deception, Vincent alias Jerome ironically claims that in his day and age it is illegal to discriminate, a practice known as "geneticism." Thus in this scene we witness Vincent preparing false DNA samples to supply him with "a new identity" and get him through the security checks that will in the end hurdle him off to Jupiter.

Bonny Dore: The media have a point of view about genetics, some of it is good, some of it not so good. But before I talk about other views of the media and genetics, geneticists, and community dialogues, I want to mention a study excerpted in the New England Journal of Medicine. This was a five-year, 5,000-person study about agents for social change, those things in your life that actually make you change your mind. The top agents were: the family (#1); peers (#2); and television and movies (#3) reaching about 35-50 million persons. television series were #12, and feature films were #13 or 14. Surprisingly, government was not up there in the top twenty. The opportunity to reach huge numbers of people and to change their minds is definitely a possibility. The key element is the media. It isn’t just what the media thinks, but what you share with them to help them think it.

Linda Wertheimer: Is there any better head start than this to catch people’s attention?

Rick Weiss: The news media are different from Bonny’s. The fundamental problem in the last several years is that the news media increasingly feel the need to be more like the movies to keep people’s attention. The distinction between news and entertainment has blurred and the pressure to entertain keeps increasing. The role of the journalist has been made harder. It is more difficult to keep people’s attention and to just tell the truth. Science is difficult. It comes in small pieces and percentages, e.g., a diagnosis of Huntington’s disease is not certain, there being an 80% chance a person will come down with it, a 20% chance they will not. In the sports and financial sections there are easy to find examples of hard-to-understand stories where we don’t know whether an action is good or bad. But science reporting has to be accessible to everyone, to be both entertainer and educator. It has the task of teaching the fundamentals first, from scratch. This is a constant challenge—the task is increasingly difficult.

Linda Wertheimer: Does anyone see a problem with leaping into the future in a way that science never would? Is there any good in this?

Daniel Yankelovich: The media do a disservice. The country is hooked on technical fixes, magic pills. The more we push in that direction, the more we undermine a balanced way of dealing with the issues.

Eleanor Singer: Both activities (the news and entertainment media) are like education. They are "top down," where we remain passive. This is the antithesis of a dialogic process. They actually represent a "seductive process." I have three grandchildren ages one through three; they are already seduced by passive TV watching. Computers are a little more helpful by being interactive. How can we move from being entertained to taking an active role in the polity?

Linda Wertheimer: Surely the next step after a movie is to go out to dinner and talk about the movie!

Bonny Dore: One point that has been missed is that it is easy to dump on the media, but we can’t ignore its power. News and programming have a reality. People in the audience, the panel, and the project need to be part of an ongoing dialogue with the creators in the media. Sometimes they suffer from a lack of information. They are very good at drama and making you care about created characters, but they can also make you care about issues, about what happens next on an issue in Congress. They do this through story, through docudramas and movies-of-the-week that are reality-based.

I did a movie called "The Jill Ireland Story" which was about drug addiction and adoption. It had to do with the issue of genetic problems in adoption that often come with addiction. Out of it came 10,000 fliers relating to families that were disintegrating and had these kinds of drug problems, telling them not to blame themselves. NBC developed a whole series of group interactions using the movie as a kick-off point. There is good to be gleaned. If you say "no" automatically to cloning, you say "no" to skin grafts, and to 10,000 things. Likewise, if you "no" to the media and turn your back on them as simply misguided and misinformed, you forget the enormous power they have. What we need to do is engage the media and show them the way. You will be amazed at the result.

Marian Gray Secundy: We must keep focused on the reality, that there are many dangers as well as opportunities in the media. The real danger is insufficient attention to the literacy and educational levels of our citizenry. For many of the scientific articles and programs, the literacy and comprehension levels of most Americans are such that it is questionable whether the educational piece that needs to accompany responsible media production is there. Health literacy was a focus of a recent Pfizer Conference. It was disturbing to hear about the incredibly low levels of comprehension and understanding on health matters and the capacity to read. Most citizens read at the eighth grade level, and people of color and new immigrants perhaps have a much a much lower literacy level on average. There is a sense of uncritical believability about what we read. Large numbers of African Americans are looking at television an extraordinary number of hours. It is a mixed bag. The media are not yet responsibly acknowledging the low comprehension levels of their viewers.

Linda Wertheimer: Bruce Jennings, there is the literary lens view of genetics expressed by you earlier, based on such popular literature as Frankenstein and Nineteen Eighty-four.

Bruce Jennings: We must distinguish factual, scientific literacy and understanding, of which there are low and differential levels across society, from the question of how we legitimate something like biological science and technology. Whether institutions and policies give legitimacy to or delegitimate these developments is a fundamental question given the economy of science and technology. The media are focused on the first, educational-type question at the expense of the second. Journalists are the "fourth estate." We believe they are the surrogate watchdog for the democratic public. We must watch for the news and entertainment media providing frames of understanding, rhetorics, and ways of coming to grips with the legitimacy of people who have power.

Many times the genetics and ethical issues are being framed by longstanding paradigms or patterns: the Brave New World factor, Nineteen Eighty-four factor, and Frankenstein factor. GATTACA is like Brave New World - people are determined from birth; both question ideas of authority. In Huxley, babies are created through better chemistry. Privacy is touched on – "Big Brother is watching you." We see in genetics new tools, but we must not overlook the "Frankenstein factor," that we are doing something out of place with God and the universe when we create ourselves and our own biology. Should we do it from science itself? The "should answers" can come not only from religious tradition, but also from what Dan Brock has called "civic space," from building our own "should’s" together with some kind of participation and civic equality.

Linda Wertheimer: In defense of my training in rhetorics, we are subject to the romance of science. We are reached all the time by people speaking for science or selling scientific ideas, which we turn into a piece. There is a lot of "hype" in science that is not us coming from somewhere else.

Rick Weiss: I agree. I am amazed by what comes at us in an effort to tell some scientist’s story. Not only individual scientists but also scientific journals have an interest financially in keeping their names in the news. The kinds of pitches we’re getting are very sophisticated and very intense, and we’re constantly having to resist and fight back. Science is not necessarily the discipline to draw the wisdom to decide what we want to do with its results.

The best example of this recently is the debate in the Senate over a bill that would have banned cloning. We have a conservative Congress right now and heavy pressure from the religious right to not allow cloning. Despite all those trends that worked in favor of banning cloning, scientists rose up in an unprecedented way and convinced members of Congress that banning cloning might get in the way of scientific or medical advances in the future. But there are a lot of alternative ways to get the same things done in science without having to clone. Congress decided in the end that scientific progress is more important than some nonscientific, ineffable value that we are uncomfortable about cloning. There really is, in my view, a worrisome trend of science becoming the source of ethical decision making.

Linda Wertheimer: Given that most of the general public views of science are from popular sources, is it possible, as the genome project has attempted to do, to reach way down into the community to come to decisions about what is right and what is not?

Daniel Yankelovich: Yes. In information we’re not equal, but in values we’re equal. It is impressive what people bring to the table. I have never done a study where I haven’t learned something. A point of view cannot be predicted in advance, especially when compounding varying groups of people. To not include that is to leave out the most important factor in a democracy.

Linda Wertheimer: In my experience it is very difficult to assemble focus groups where people are of equal standing to participate. I have abandoned them for homogeneous groups to ask the issues.

Daniel Yankelovich: The needs of the media and the unfolding of focus groups don’t mesh very well. People won’t "smell each other out." But we can still use focus groups. The findings need more editing than a manuscript, but they are useful in particular contexts.

Linda Wertheimer: What about the survey side as opposed to focus groups or other methods of ascertainment?

Eleanor Singer: That depends on what you’re trying to do. A focus group is different from a dialogue group. Surveys are very good at giving accurate measures of a representative samples of the public’s feeling on a variety of issues. You can craft the questions in many ways that make sense to the people you’re asking, and focus groups are very helpful in the process of crafting those questions. Surveys are wonderful for measuring changes in opinion and trends over time. I am impressed by how sensible people seem to be in dealing with genetics questions - more than they are given credit. I think surveys are good at getting at subgroups of opinions, which may not be representative of the opinions in a small group of people which you have convened. There are things surveys are very good for.

Marian Gray Secundy: To achieve equal partnering and equal presentation of views needs a great deal of attention and work. We can use a variety of mechanisms and methods. I appreciate the value of homogeneity. There is also a great deal of work to do for inclusion. The voices of the unempowered are not heard in traditional society, but need to be. They won’t be heard if we don’t work at it. One must use caution with the language used in telephone surveys. Difficulties exist here that we must reflect on.

Linda Wertheimer: I have gotten the impression that there is considerable hostility towards genetic research, especially among people of color. There are feelings that it is a way to establish superiority or inferiority and to infer or describe people’s propensity to diseases or conditions which may be easily identified in a relatively small group of people, that this is something which is a special problem in this field.

Marian Gray Secundy: This is true. We have seen it reflected in the information we got from the community dialogues, and we hope to get more on this with the project renewal. The distrust and suspicion are grounded in very real American history. In the March National Dialogue on Genetics Conference sponsored by Howard University, we brought together the most diverse groups of people. Communities of color - African American, Native American, Asian, people from many different Latino-Hispanic origins - were represented. Across the board there was distrust, suspicion, and fear of stigmatization.

Of interest is the fact that members of the Ashkenazic Jewish community see the dangers and opportunities of genetic knowledge and technology. They have great concern about the present, not only the past, relative to the misuse of genetic information and a lack of understanding among people. Talking with Pilar Ossorio and Blondeen Munson about their communities, incredible and very frightening things are happening that relate to police behavior and tips for targeting persons in connection with violence and genetic characterizations. The Baltimore Sun and the New York Times printed articles on experiments with fen-phen at Mount Sinai in New York performed on black boys and Hispanic youth without their informed consent. This is very frightening. The need exists for a continuing dialogue amongst ourselves acknowledging the perceptions of people of color. The comments of minorities are received among members of the scientific and professional community by such statements as, "Oh, you can’t really believe that" or "So, what’s the problem? It’s not the majority perception." These reactions are increasingly worrying. The distrust issue is critical.

Linda Wertheimer: Is there a difference between questions about the understanding of the issues, and those relating to how they affect us? Are there concerns about reaching the public versus the élites?

Bruce Jennings: We do tend to personalize, privatize, and individuate. We need to find a way to go from "I" to "we," and to see how these understandings affect the common good of society. We are deeply ambivalent about democracy itself. There is a disconnect of the scientific élites, who are afraid of "knee-jerk" responses from the public and worried they won’t listen to reason. The need exists to talk more about how new institutions of civic dialogue can be linked to our representative and elite-style political structures.

In a democracy you can choose leaders, but we need to move one step further and involve citizens in deliberation about public policy itself. Where this has been tried, the public was less interested in the details of policy per se. "Should cloning be banned?" is the wrong question. The right question is, "What can we inform policy makers on regarding the right questions to ask?" What values, concerns, and ideations should inform policy?

Linda Wertheimer: One of the alarming things that does happen when the public gets to make decisions is the advertising strategies over propositions that cause the public to be more confused. One of the worst aspects of trying to organize public debate which would engage the leadership and change their views in some way is that people are completely hostile to politics, as they have been presented over the last fifteen years with a series of bad choices.

Bonny Dore: We haven’t yet discussed the Internet. It is a big part of what I do in a promotional but also an informational sense. It is one of the elements of the future, a global means of communication, of coming together and sharing information around issues and ideas in files, chat rooms, or forums. The Caucus for Writers, Producers, and Directors of which I am a member is a socially driven group in Hollywood concerned about content on television. We have a web site to post ideas and thoughts, and have voting and interaction. People can post messages and thoughts about this week’s topic or issue. Those are elements or tools to be used that deserve discussing.

Audience and Panelist Comments
Marian Gray Secundy: I am disturbed by the reference to the Internet in relation to "this public" and "this society." The Internet will probably make the greatest difference in the separation between the "have’s" and the "have not’s." It will not be available to most citizens, especially people of color. You must have the money to have it.

Bonny Dore: The Internet is simply one tool out there which we can’t ignore. I do agree with you that its availability is limited to some areas. On the other hand, it does have a global reach that is surprising in such a short time. There are many things in the policy area that need to be addressed, which can make a difference in a short period of time. The Internet hasn’t just arrived—it has "exploded!"

Daryle-Gardner-Bonneau, Michigan State University SCHS Office of Research: There are folks who are snobby and say, "I don’t watch television." But there is good material on broadcast television. Picket Fences raised a lot of ethical issues and generated an incredible amount of dialogue among people after it was over. What can those of us who are scientists grappling with the ethical issues do to generate such qualities in television? How should we frame the issues so that these kinds of dialogues or web voting can occur?

Bonny Dore: The Caucus for Writers, Producers, and Directors has been the leader in television in framing these issues. We just had a very important get-together on the drug issue with drug-czar General Barry McCaffre on education. He asked us to pull together some of the outstanding writers, producers, and directors in television to talk about ways to incorporate related issues and ideas in our programs. In a very short time, a couple of hours, we had initiated a continuing dialogue. We are doing the same thing with the anti-smoking and alcohol people. It has been very "social problem" issues-driven. I think that we are more than ready to open our arms to larger issues. The Caucus is one way. There is also a group called Population Options in Los Angeles which covers some of the issues your genome group does. They work with us on a continuing basis to help story lines, frame reference, put together small groups with key people. You would be amazed at how hungry people are for information.

Joan Weiss, Alliance of Genetic Support Groups: The Alliance has a help line. How can we, as representatives of the public, be of help to the media? They are swamped with calls whenever there is a news release about a new discovery.

Rick Weiss: The press counts on a chorale of reasonable people who understand the science and ethics when genetic discoveries come up. Increasingly it relies on experts in each disease area and those not involved who can say what it does and doesn’t really mean to people. It is important that there be a source out there for us that’s still a little bit "clean" because of the financial interests behind all the genetics research and science done now. Ten years ago almost all this work was being sponsored by the government and nobody had that much to gain from it. Now it is intensely financially driven and it is getting harder to find groups like your own that are just trying to say something without trying to gain.

Michelle Champoux, Vermont Ethics Network: We have held five or six community dialogues or discussions, and are about to start a genetics dialogue / information-imparting project. We haven’t found a process for framing choices in a way that makes the biases apparent to us before I go out and discuss the choices.

Daniel Yankelovich: We also have struggled with this. The problem is part of the "choicework" concept. The choices are empirically-derived. If you’re considering how to formulate the choices, we inevitably bring our own knowledge and biases into them. We have found that an iterative process or series with groups of people is helpful. Where you start with groups of people, have them articulate their concerns, then begin to formulate the choices and their pros and cons. In this iterative process you then go to the next group and get their reactions. Pretty soon you’ll find something remarkable; there is not an infinite number of choices. Very quickly, the range of choices and issues begins to clarify itself from two to five, not twenty, i.e., it is a manageable number. You do have to keep alive new considerations and information that come up. During the "sniffing" process, if you can give people choices, that can engage them much more quickly because there’s something to react to, especially if the choices have been derived from their own thinking. People recognize them right away and can react to them.

Eleanor Singer: Howard Schuman has done this. If you put alternative choices to people who have extreme views on one side or another and ask for their reactions, this is a good way of identifying the biases in the choices quickly.

Bert Bandman, Long Island University, Brooklyn Philosophy Department: I am puzzled by some of the terms used: informed consent, democracy, dialogue, public, free society, should, diary, value-fact, value-free. We have not heard enough about the role and use of reason in all of these. Reason can help resolve multiple questions: What are the limits of informed consent? Can the doctor go on forever? Obviously not. When we refer to "public," which American "publics" are we talking about, to use a word of John Dewey’s from his book The Public and Its Problems? What is the role of reason in the value-fact conflict and in the analysis of democracy?

Daniel Yankelovich: We have heard "the public has good sense," "the public has good judgment," "the public is deliberating." It is probably a good idea to exclude the word "reason" because the baggage that goes along with the philosophical concept of reason is one of the distorting factors. Also, I wouldn’t agree that we are not talking about "publics." As Eleanor Singer commented, one of the uses of surveys is to look at "subgroups," which are the same thing as "publics." We shouldn’t get hung up on the semantics since the underlying concepts have been used in abundance.

Marian Gray Secundy: The stress is on different ways of knowing. "Reason" has different meanings to different groups and subgroups, and we have to keep this in mind.

Linda Wertheimer: We have certainly raised enough issues "to carry with us to church." Thanks to everyone!