Background Paper on Public Outreach Activities at the National Human Genome Research Institute

Background Paper on Public Outreach Activities at the National Human Genome Research Institute

An inventory prepared for the NHGRI
Education and Public Outreach Workshop

June 10, 2002

By Geoff Spencer
Communications and Public Liaison Branch

Introduction

The National Human Genome Research Institute (NHGRI) coordinates a number of outreach efforts aimed at specific audiences, including the general public and specific population groups. The Office of the Director (OD) and the Office of Science Education (OSE) in the Division of Intramural Research primarily run these efforts. Additionally, NHGRI's Minority Outreach Team conducts activities to address health disparities and to recruit minority scientists to pursue careers in genomics.

Exhibits and Distribution of Materials at Meetings

NHGRI has a 10-by-10 foot traveling exhibit that it sends to approximately eight meetings each year. The exhibit, staffed by NHGRI personnel, provides general information about the Human Genome Project (HGP) as well as information about the institute's research and training opportunities. The exhibit targets a variety of audiences, including the scientific community, academic professionals, students pursuing careers in science, and the lay public.

The exhibit schedule currently includes the American Society of Human Genetics (ASHG) annual meeting, the Society for the Advancement of Chicanos and Native Americans in Science (SACNAS) annual conference, and the Annual Biomedical Research Conference for Minority Students (ABRCMS). The ASHG meeting draws researchers from the field of genetics and academic professionals. SACNAS and ABRCMS draw Undergraduate and Graduate students from minority institutions interested in pursuing careers in science.

Exhibiting at these meetings gives NHGRI the opportunity to inform attendees about Human Genome Project and Ethical, Legal and Social Implications (ELSI) research. NHGRI provides brochures and papers describing NHGRI research programs and, more important, information about funding and training programs.

NHGRI also exhibits at approximately five events held on the National Institutes of Health (NIH) campus each year. This includes "Share the Health," the "NIH Work and Safety Expo," and other NIH community events held for the lay public and NIH employees. NHGRI disseminates information about the Human Genome Project and its implications for medicine and society.

In addition, NHGRI sends handout materials to several meetings each year when a representative can't be physically present to exhibit. These include meetings held by the American Medical Association, the American Society for Cell Biology, the American Academy of Family Physicians and the National Institute for Nursing Research.

Public Inquiries

The NHGRI Communications and Public Liaison Branch (CPLB) receives approximately 400 public inquiries each year from the general public, teachers, students, patients, medical professionals, NIH institutes, the Department of Health and Human Services (DHHS), and members of Congress and their staff. The majority of the inquiries are from teachers and students at the high school and undergraduate college level doing research about the Human Genome Project. Inquiries from these students are often directed to NHGRI's online education kit. The CPLB also provides research papers and other references if applicable to a student's research.

The inquiries from NIH, DHHS, and members of Congress are often legislative in nature and therefore handled by NHGRI's Policy, Education and Outreach Branch (PEOB).

Patient Inquiries

NHGRI receives many inquires from patients and family members seeking information about genetic and rare diseases. Historically, there has been no good place for patients with genetic or rare diseases to get authoritative information, primarily because these illnesses afflict relatively few individuals and there are few experts in these conditions. In February 2002, the NHGRI and NIH Office of Rare Diseases opened the Genetic and Rare Diseases Information Center. The information center provides free and immediate access to information specialists who can provide accurate, reliable information about genetic and rare diseases to patients and their families.

The center relies on existing public domain sources, including reliable Web sites, brochures, articles and even chapters from books. Experts at the information center ensure that the information sent out is current and accurate. NHGRI clinical staff review the materials going out from the info center to ensure accuracy. The center, however, does not provide genetic counseling and does not offer diagnostic testing, referrals, medical treatment or advice. The information center has received over 1,000 inquiries to date affirming the need for this valuable resource.

Media Inquiries

Because the Human Genome Project has been a high profile enterprise, NHGRI has received an enormous amount of attention in the media. NHGRI receives approximately 600 inquiries from the media - print and broadcast - each year. The CPLB responds to these inquiries by providing information, multimedia resources, and individuals to interview. NHGRI director Francis S. Collins conducts a large number of these interviews.

In addition, the CPLB takes a proactive strategy by writing and distributing press materials describing important research taking place in the Human Genome Project and NHGRI's Division of Intramural Research. The CPLB also promotes other newsworthy NHGRI programs to the media such as NHGRI awardees, lectures, meetings, and collaborations with other NIH institutes and outside organizations. Recent press release examples include: "International Team of Researchers Assembles Draft Sequence of Mouse Genome"; "Researchers Link Gene To Hereditary Form Of Prostate Cancer"; and "National Human Genome Research Institute and the NIH Office of Rare Diseases Launch New Information Center." (See: Current News Releases)

Conferences/Lectures

NHGRI runs a series of conferences and workshops throughout the year. Many are aimed at professional audiences, but some are aimed at more general audiences. These include:

1. DNA Day/Consumer Day: For the past three years, NHGRI has run a public event intended to give consumers an opportunity to learn about the Human Genome Project, genetic and genomic medicine and how this field of medical research will shape the future of medical care. The most recent event was a three-day conference in November 2001 entitled "The Human Genome Project Conference: The Challenges and Impact of Human Genome Research for Minority Communities." It was co-sponsored with Zeta Phi Beta National Education Foundation, Howard University and the Family Life Center Foundation at Shiloh Baptist Church in Washington, D.C. More than 400 people attended.
   
   This is the third year that the institute has sponsored a daylong conference about the Human Genome Project. Past conferences have included speakers from NHGRI, pharmaceutical and biotech industries presenting information about genetic science, pharmacogenomics, genetic testing, privacy issues regarding genetics and the effect of genomic science on future healthcare. Approximately 900 registrants have attended the three conferences.
   
   
2. Smithsonian Seminar Series: Every two years, NHGRI cosponsors a lecture series with the Smithsonian Institution. The last seminar was held in the winter of 2001, entitled "The Human Genome Project: From Maps to Medicine" and included leading researchers from NHGRI and other institutions.
   
   
3. NHGRI Lecture Series: NHGRI hosts an annual lecture series open to the public. This year's lecture series is sponsored by the ELSI Research Program and includes a series of 4 lectures. The lectures typically draw 50 to 75 people.

NHGRI Web Site

The Internet is a powerful resource for anyone who is looking for information on the Human Genome Project. NHGRI's new Web site, launched in June 2002, contains much of the same information as the old site and updated and new information in a new and improved package organized for improved usability of information. NHGRI's goal is to make its Web site a tool that people will repeatedly use by providing the latest research information and resources for its various audiences.

Speaking Engagements

NHGRI's director and the senior clinical advisor to the director each give approximately 40 presentations a year about the Human Genome Project and its implications for medicine and society. The audiences include scientists, healthcare workers, physicians, hospital executives, legislators, teachers and students, as well as the lay public. Most of the presentations are given to national audiences. Individual researchers from across the institute speak to both professional and lay audiences.

Many of the presentations result in an increase in public and media inquiries, which reflects the success of this type of outreach.

NIH Mini Med School and Medicine for the Laymen lecture series: NHGRI provides speakers for two popular NIH lecture series attended by hundreds of citizens from the area around the NIH campus.

Tours

NHGRI receives a number of requests for tours of the intramural facilities. The requests come from educators, legislators, and scientists. NHGRI can only facilitate around 10 tours each year. Priority goes to members of Congress and their staff.

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