GENEWATCH
 
COMMUNICATING COMPLEXITY
By CRG staff - interview with Vence Bonham
 

Vence L. Bonham, Jr., JD, is Chief of the National Human Genome Research Institute's Education and Community Involvement Branch and Senior Advisor to the NHGRI Director on Genomics and Health Disparities.

GeneWatch: Can you say a bit about NHGRI's public education programs?

Vence Bonham: The National Human Genome Research Institute established a branch in the Division of Policy, Communications and Education more than 8 years ago that is focused on public education, called the Education and Community Involvement Branch. Our primary mission is to engage the public, and specific targeted audiences within the public, to share research findings on genetics and genomic science, and to have dialogues with communities on issues that are of importance to them. The second component of our program has been focused on public education related to genomic health literacy and genetics and science education targeting a variety of audiences.

How has this work evolved over the past eight years?

We've narrowed our focus in many ways over the years. One of the reasons this branch was established is that when Dr. [Francis] Collins was the director of the Genome Institute, he recognized the need to engage diverse communities across the country. One of our major programs involved conducting community genetics forums, hosting year-long programs to discuss the issues of genetics and genomics research. We are excited to engage individuals within a community, not only to enhance their knowledge but also our understanding of the issues important to their specific community.

We have also been involved in family health history projects. We've worked with the Surgeon General's office to communicate to the public the importance of knowing your family health history. We have also supported a number of demonstration projects in different communities related to family health history.

In the next few years, our program priority area will focus on genomic literacy. We will assist in facilitating the public's knowledge as genomic medicine comes to clinical practice. Today, we are beginning to see the reality of genomics in peoples' lives, particularly related to clinical care. A major part of our work is to help educate the public (patients and family members of patients) as they make health care decisions, but also charge them to be scientifically knowledgeable and informed citizens.

So with genomic literacy being a focus, are there any specific groups of people you are especially trying to reach?

There are - although our budget has been reduced recently along with many other government agencies. Unfortunately, we have had to eliminate some of our programs. One audience we have especially tried to reach is American Indian and Alaska Native communities. Recently, we helped develop a genetics resource tool for tribal communities. We worked with the National Congress of American Indians on these efforts. The objective of this program is to provide genetic and genomic information, not encourage or discourage their participation in research, but to help tribal communities make decisions based on what is important to their community.

One of the activities we are very excited about right now is the collaboration with the Smithsonian Institution in Washington, D.C. We partnered with the National Museum of Natural History to create a genomics exhibition that opened this month to the public. The 4,400 square foot exhibit highlights the role of genomics in the natural world and the importance of genomics in human health and the broader societal issues, integrating ethical and social issues. We expect the exhibition, "Genome: Unlocking Life's Code" to reach over 5 million visitors in 15 months. It will then tour North America over a four-year period thanks to generous support from sponsors and private donors.

Here's an annoying question: When you have a goal of educating the broader public, how do you measure success?

There are various ways to do it, but there are certainly limitations. Part of it is to measure access to the information you're disseminating to the public and their participation in programs developed.  We use data from programs, which include the number of individuals visiting our websites and attending our programs, and the number of teachers who use our materials. We also conduct formal evaluations. Program evaluation is a challenge of informal science education.

So we know that many people are at least accessing the information, but are there any signs we might look for to indicate a broad improvement in public awareness of genetics?

I think participation in certain activities is an indicator. With the example of collecting family health history, we have seen a steady increase in the number of people who have gone to the U.S. Surgeon General's family health history tool and downloaded the information.

I've asked a couple of other people this same question: Are there any pervasive misconceptions about genetics you come across? Do you read things or see things on the news that make you just smack your forehead?

Sure, I read things that make me cringe, statements which are not communicating the message that's important for the public to understand. Specifically, not communicating the complexity of traits and diseases, the role and relationship of the genomic and environmental components of disease. In our programming, we attempt to address those misconceptions and misunderstandings, and it's a clear goal of this new Smithsonian exhibition. It's the challenge of what sells newspapers, what makes headlines, versus the complexity of the issues and increasing public knowledge of genomics. I've been involved in this area for over ten years, and clearly I see, in my opinion, an increased knowledge and understanding. And that's happening in the lay media too. We clearly still need to address misconceptions about our understanding of the role of genes and the environment in disease, and the fact that most diseases are not single gene disorders, but complex and multifactorial.


 
 
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