GENOMICS IMPACT NEWSLETTER

 Volume 3: Number 6 June 2003

 

Welcome to GENOMICS IMPACT, the monthly electronic newsletter produced by the Association of State and Territorial Health Officials’ Genetics Project. The material contained in this newsletter is for informational purposes and does not necessarily reflect the views of ASTHO. The Internet addresses (URLs) and their contents in this newsletter are correct at the time of publication. However, readers should bear in mind that Internet addresses and their contents can change without notice. In addition, some articles may require a free or paid registration. To receive this newsletter by email, or to unsubscribe, please send a request to lsternesky@astho.org

 

Links to Newsletter Features

 

 

State Profile

§         Washington State Genetics Profile

 

Policy

 

Chronic Disease

 

Environmental Health

 

Health Education

 

­What’s New

 

Events

§         Click Here or Scroll Down for Events Calendar

 

 

State Profile

Washington State Genetics Profile:  Genomics at the Washington State Department of Health (DOH) arose from maternal and child health and has grown from a foundation of policy and education to include the delivery of clinical genetic services. Strong DOH interest in genomics has led to a number of genomics and public health activities in the state led by the agency’s Genetics Services Section. One project of the Genetics Services Section was the completion of a genetics education plan for the state, which highlights the use of creative funding mechanisms and the value of partnerships to achieving shared genomic goals.

 

In 1997, the DOH convened a team of stakeholders, the Genetics Education Steering Committee (GESC), to develop a comprehensive genetics education plan for the state. The health agency’s Genetic Services Section staff had previously tried to implement genetics training for physicians, which met with modest success. They had learned of training efforts aimed at various professions and wanted to know who was receiving training in genetics, who was not, and what redundancies existed. Specifically, they wanted to know whether key target audiences—public health professionals, physicians, the public, and others—were being educated in genetics.

 

Money would be needed to fund a contract to convene the GESC, to collect and analyze data on genetics training initiatives, and to assist in writing the state genetics education plan. However, there was no funding for this project in the genetics program budget. Deborah Lochner Doyle, the director of the genetics program, estimated that the cost for this initiative would be approximately $75,000, and she brought the proposal to the maternal and child health management team, of which she is a member. Having laid some groundwork in the past regarding the importance of genomics to the public's health, Ms. Doyle found that the team was receptive to her proposal. She emphasized that this was one-time funding and that funds would not be needed to sustain this initiative after the GESC had completed its work. To support the project, team members went back to their existing program budgets and estimated the amount of funds that would be remaining at year-end. The leftover funds were mainly a result of unfilled vacancies. This money was pooled to amass the funds needed to cover the cost of the project.

 

Ms. Doyle hired a consultant, the EvansGroup, to facilitate the GESC meetings, which allowed the DOH to participate as an equal partner. The EvansGroup was charged with coming up with a plan that would allow for the development of a comprehensive education plan—one that would be owned by all the state stakeholders.

 

Through focus groups, telephone interviews, and community meetings, the GESC learned valuable lessons about how to provide genetics education to the various groups identified in the report, and more broadly, how to approach an innovative project such as this. Ms. Doyle states that the most important lesson is to identify stakeholders and those who may already be doing something in the area that will be addressed. In addition to gaining additional perspective on your project, additional funds and partnership opportunities also may be identified. As a result of the GESC meetings, Maureen Munn, PhD, at the University of Washington, received several GESC members’ support for her application for a Dwight D. Eisenhower educational grant. Some GESC members became advisory committee members for the awarded project, the Genetics Education Partnership, which created a framework for teaching genetics concepts in grades K-12.

 

The GESC found that educational needs as they pertain to genetics have not changed and that all groups are critical to educate. The report identified a total of nineteen educational audiences, including adoption workers, clergy, the general public, insurance providers, laboratorians, the news media, and teachers. A variety of educational opportunities such as conferences, CD-ROMs, pocket facts, and telephone hotlines must be offered to accommodate different learning styles of these audiences. Dr. Doyle believes that while the health agency may not have a role in educating all the groups identified in the report, the agency is good at convening stakeholders, and may have a role in educating certain groups, such as policymakers, primary care physicians, allied health care workers, social workers, and consumers. 

 

The creation of the GESC allowed for more effective use of the limited resources of each individual stakeholder, and produced a report that is relevant to all potential genetics educational audiences. By convening the group, the DOH aimed to eliminate redundancies in genetic education across the state. Dr. Doyle anticipates updating the plan soon, and finding out what progress has been made on their recommendations.

 

Policy

State Legislation Highlight: In the month of May, state legislatures introduced bills on the following genetics issues:

§         Privacy: Alaska (SB 217)

 

For more information, visit the Genetic Laws and Legislative Activity page of NCSL's Genetic Technologies Project www.ncsl.org/programs/health/genetics/charts.htm.

 

U.S. Senate Committee OKs Bill to Ban Genetic Bias: The U.S. Senate Health, Education, Labor, and Pensions Committee voted to approve the Genetic Nondiscrimination Act of 2003, sponsored by Senator Olympia Snowe (R-ME), that would bar health insurance companies and employers from discriminating on the basis of a person’s genetic makeup or predisposition to disease. The issue has been before the committee for five years. Under the bill, insurers would be prohibited from seeking or using genetic information to set rates or deny coverage, and employers would not be allowed to either collect or use genetic information, with the exception of testing used in determining the effect of workplace exposures to hazardous substances. The bill will next be considered before the full Senate. Source: www.reutershealth.com/archive/2003/05/21/eline/links/20030521elin039.html

 

                                                                                                               

Chronic Disease

Inherited BRCA-Mutations Improve Treatment Response and Survival Among Ovarian Cancer Patients: In the May 1 issue of Cancer, researchers from Cedars-Sinai Medical Center report that patients with hereditary BRCA-associated ovarian cancer may have greater sensitivity and response to chemotherapy, which may contribute to improved survival rates among these patients. Researchers analyzed the tumor characteristics, treatment responses and survival outcomes of 71 Ashkenazi Jewish women with ovarian cancer, and found that 86 percent of 34 patients with hereditary BRCA mutations had no recurrent disease, while 41 percent of ovarian cancer patients without the BRCA mutations had no recurrent disease. Survival time for patients with advanced stage cancer was 91 months for those with the BRCA mutation, and 54 months for those without the mutation. Improved prognoses appear to be from better response to chemotherapy rather than less aggressive disease. Researchers hope this knowledge will lead to the development of targeted therapies and drugs to improve ovarian cancer survival rates. Source: www.eurekalert.org/pub_releases/2003-05/cmc-ibi042803.php. Based on an article published in Cancer May 1, 2003; 97(9):2187-95 by Cass, I. et al.

 

Common Gene Variant Increases Risk of Atherosclerosis: Scientists at Johns Hopkins University have identified a common version of a gene that is a risk factor for early-onset atherosclerosis. They found that study participants with at least one copy of a gene called “klotho” have almost twice the risk of having undetected atherosclerosis. In addition, smokers with at least one copy had seven times the risk of non-smokers, and smokers with low amounts of HDL cholesterol had almost 10 times the risk of non-smokers. The study demonstrates that “modifiable” risk factors can affect an individual’s genetic risk of atherosclerosis. Source: www.hopkinsmedicine.org/press/2003/May/030501.htm                                     

Environmental Health

The Comparative Toxicogenomics Database (CTD): The Mount Desert Island Biological Laboratory is developing the Comparative Toxicogenomics Database (CTD), a “community-supported genomic resource devoted to genes and protein of human toxicologic significance.” The focus of the database is to provide nucleotide sequences from diverse species, associations between genes and toxic agents, and information on available molecular agents, with the ultimate goal of facilitating understanding of the complex interactions between the environment and human health. Source: Mattingly, C.J., et al. “The Comparative Toxicogenomics Database (CTD).” Environmental Health Perspective. May 2003; 111 (6):793-5.

 

Health Education

What Does “A Gene for Heart Disease” Mean? A Focus Group Study of Public Understandings of Genetic Risk Factors: Researchers conducted focus groups in Georgia in 2001 to examine public interpretation of the phrase “a gene for heart disease.” A total of 108 participants were asked their understanding of the phrase. Researchers studied participants’ statements of meaning of the phrase, the level of determinism they assigned to genetic factors, and their understanding of the health consequences of having “a gene for heart disease.” Overall, participants’ perceptions of genetic risk factors were not deemed deterministic. Source: Bates, B.R., et al. “What Does ‘A Gene for Heart Disease’ Mean? A Focus Group Study of Public Understandings of Genetic Risk Factors.”  American Journal of Medical Genetics. June 2003; 119A(2):156-61.

 

Public Knows No More About Genetics Than in 1990: A study conducted at the University of Michigan Institute for Social Research revealed that U.S. adults know no more about genetic testing than they did in 1990. Researchers compared data from a 1990 and 2000 random-digit-dialed national survey of 1,006 and 1,824 respondents, respectively. Topics included attitudes toward prenatal testing, abortion, genetic testing in the workplace, genetic testing for adult-onset untreatable diseases and an “accuracy index” designed to test respondents’ knowledge of genetics. A significantly lower percentage of respondents answered the accuracy index questions correctly in 2000 versus 1990. Researchers conclude this indicates a need for more and better public education about genetics. Source:/www.eurekalert.org/pub_releases/2003-05/uom-pkn051303.php.

 

­What’s New

Johns Hopkins Receives $24 Million from Donald W. Reynolds Foundation to Study Sudden Cardiac Death: The School of Medicine has received a four-year $24 million gift from the Donald W. Reynolds Foundation to establish a multidisciplinary center focused on reducing the rate of sudden cardiac death. The Donald W. Reynolds Cardiovascular Clinical Research Center will attempt to identify genetic factors in sudden cardiac death, study new biological therapies, and use imaging techniques to define the functional, structural, and metabolic features of the heart that lead to arrhythmias. Source: www.hopkinsmedicine.org/press/2003/May/030509.htm.

 

Large DNA File to Help Track Illness in Blacks: Howard University plans to create the nation’s largest repository of DNA from African-Americans, to help identify genes that are associated with diseases that are particularly prevalent in the African-American population, such as hypertension and diabetes. Genetic samples will be gathered from 25,000 volunteers over a five-year period. The project is expected to cost several million dollars for each disease studied. Information gained from the project will be made available to Howard researchers, as well as outside scientists and drug companies. Source:www.nytimes.com/2003/05/27/national/27GENE.html.

 

New Scottish Gene Bank to Rival UK’s: Scottish scientists plan to establish a new genetic database, Generation Scotland, to compile and study genetic samples from 50,000 patients. The database will focus on those who are ill or have a family history of cancer, heart disease, stroke, or mental health problems. In contrast, the UK Biobank, will study the genes of 500,000 healthy volunteers, including some Scots. The project will include a database of genetic and medical information held by NHS Scotland, and will have a research and technology arm to “conduct and interpret genetic studies and a commercial arm to exploit the findings.” Scientists expect results in five to ten years. Source: www.sundayherald.com/print33814

 

 

Events

June 11-12, 2003: Secretary’s Advisory Committee on Genetics, Health, and Society, Washington, DC. Visit: www4.od.nih.gov/oba/sacghs/sacghsmtg.htm

 

July 6-11, 2003: 2003 International Congress of Genetics, Melbourne, Australia. Visit: www.geneticscongress2003.com/index.php.

 

July 18-20, 2003: 8th Annual Genetics and Ethics in the 21st Century, Aspen, CO. Visit: http://www.uchsc.edu/cme/geneticsethics.pdf

 

August 3-8, 2003: Human Genetics and Genomics, Colby College, Waterville, ME. Visit: www.grc.uri.edu/programs/2003/humangen.htm

 

September 2-6, 2003: 9th International Conference of Inborn Errors of Metabolism, Brisbane, Australia. Visit: www.iciem.org

 

September 9-12, 2003: ASTHO-NACCHO Joint Conference, Phoenix, AZ. Visit: http://www.astho.org/?template=annual_meeting.html&PHPSESSID=727af9d973890a537555f4a7e5fcdf87

 

September 29-30, 2003: EDGE course, Ethical and Legal Considerations for Genetic Research, Atlanta, GA. Visit: www.louisville.edu/medschool/ibhpl/courses/edge/index.html

 

November 2-4, 2003: International Genetic Epidemiology Society, Redondo Beach, CA. Visit: www.genepi.org.

 

November 15-19, 2003: American Public Health Association 131st Annual Meeting and Exposition, San Francisco, CA. Visit: www.apha.org/meetings/

 

 

GENOMICS IMPACT is supported through cooperative agreements with the Centers for Disease Control and Prevention and the Health Resources and Services Administration. If you have any comments or questions, or would like to contribute information to Genomics Impact, please contact Laura Sternesky at lsternesky@astho.org

 

ASTHO Genetics Project Staff: Amy Klein, MPH, Director, Genetics, Aklein@astho.org, and Laura Sternesky, MPA, Senior Policy Analyst, Genetics, Lsternesky@astho.org

 

The Association of State and Territorial Health Officials (ASTHO) is the national nonprofit organization representing the state and territorial public health agencies of the United States, the U.S. Territories, and the District of Columbia. ASTHO's members, the chief health officials of these jurisdictions, are dedicated to formulating and influencing sound public health policy, and to assuring excellence in state-based public health practice.