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Cancer Genomics Epidemiology
Below are reports and data on cancer genetic counseling and testing for individuals who are most likely to be diagnosed with Hereditary Breast and Ovarian Cancer (HBOC) or a cancer associated with Lynch syndrome (LS). To access more information about a particular topic, please click on any of the accordion headers below.
For more information about the surveillance work of the MDHHS Cancer Genomics Program, please contact Beth Anderson, MPH, at 517-335-9785 (e-mail: AndersonB@michigan.gov).
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MDHHS Cancer Genomics Program
The Michigan Department of Health and Human Services, in collaboration with the Centers for Disease Control and Prevention, has created a multi-faceted, comprehensive cancer genomics program that encompasses public health surveillance, health education for providers, creation of resources to promote public awareness, and policy recommendations for health insurance plans.
Please visit the CDC's Cancer Genomics Program for additional information regarding what Michigan and other states are working on as part of this program.
Please visit the Hereditary Cancer Program for additional information regarding hereditary cancers and access patient and provider resources.
For more information regarding Genetics and Genomics Programs at MDHHS, please visit:
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Data Sources
BRCA Clinical Network Database
This database functioned as a statewide network for the purpose of learning about the use of genetic services in clinical facilities that provide BRCA counseling in Michigan. It was active from 2008 to 2016.
Twenty clinical facilities provided MDHHS a de-identified, limited dataset on all patients receiving BRCA counseling during the period of interest. These data include patient demographics, type of referring provider, personal and family histories of cancer, insurance type, BRCA test orders and results, and reasons for not testing, if applicable.
Hereditary Cancer Network (HCN) Database
This database was created in 2016 as an extension of the BRCA Clinical Network Database to include patients who received genetic counseling and testing for cancers associated with Lynch syndrome (LS).
The HCN Database is a unique database that functions as a statewide surveillance network for tracking the use of cancer genetic counseling and testing services for actionable genes that are associated with Hereditary Breast and Ovarian Cancer (HBOC) and Lynch syndrome (LS) cancers in Michigan. Sixteen clinics have entered data into this database as of 2020.
The HCN Database is used to assess trends in genetic counseling and testing, specifically to gather information on patient demographics, type of referring provider, personal and family histories of cancer, insurance type, cancer genetic tests ordered and their results, and reasons for not testing, if applicable.
Michigan Cancer Surveillance Program (MCSP) Incidence Data
The MDHHS Division for Vital Records and Health Statistics' Michigan Cancer Surveillance Program (MCSP) conducts surveillance work on cancers associated with Hereditary Breast and Ovarian Cancer (HBOC) syndrome as well as Lynch syndrome (LS).
Since 1985, MCSP has operated under a statewide mandate to report new cases of cancer; it currently contains more than one million incident cases.
Data are collected on approximately 62,000 new cancer cases annually from all Michigan hospitals and laboratories, as well as from some out-of-state laboratories. The program collects demographic, tumor, extent of disease, first course of treatment, and family history of cancer information.
The MDHHS Cancer Genomics Program has used cancer registry and vital records data to analyze early onset breast cancer, male breast cancer, ovarian cancer, and other possible hereditary cancer cases by age of diagnosis and age of death going back to 1990. These same data also were used in a novel analysis of multiple primary cancer diagnoses of cancers that could be hereditary.
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Current CDC Grant Objectives
Two hereditary cancer syndromes are the primary focus areas of Michigan's Cancer Genomics Program:
- Hereditary Breast and Ovarian Cancer (HBOC), which is due to a BRCA1/2 gene mutation, and
- Lynch syndrome (LS), which is due to a mutation in the DNA mismatch repair (MMR) genes (MLH1, MSH2, MSH6, PMS2, and EPCAM). Lynch syndrome is implicated in the development of colorectal, endometrial, ovarian, and other types of cancers.
The ultimate long-term objective of these activities is to reduce the incidence and mortality of hereditary cancers (specifically breast, ovarian, colorectal and endometrial cancers) by overcoming barriers and increasing the appropriate utilization of genetic counseling and testing for HBOC and LS.
Other surveillance-based outcomes of these activities include:
- improving data on hereditary cancer burden and utilization of cancer genetic services;
- increasing the proportion of individuals who report that they are aware of their family history of cancer and have discussed their associated cancer risk with a health care provider; and
- increasing the proportion of individuals at high-risk for hereditary cancer who are counseled and utilize risk management strategies.
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Epidemiology Summary
Cancer Genetics vs. Cancer Genomics
Genetics is the study of genes that people may or may not inherit at birth, passed on from their parents.
Genetic testing may help a person identify if they have a risk of cancer or some other inherited disease. When thinking about cancer, this type of testing often occurs before cancer is developed, so there is no tumor that is tested. Rather, a blood or saliva sample is obtained and tested to look for risk of disease.
Genomics refers to the study of specific mutations in genes that cause disease.
Genomics testing identifies mutations within tumors. Instead of identifying a hereditary condition like genetic testing does, genomics testing only looks at mutations in the tumor itself, which can be caused by other external and internal factors (e.g., smoking, sun exposure, random molecular change within the cell).
In order to identify whether a mutation is hereditary or not, tumor testing (genomics testing) is done, and the results are compared with results from the patient's genetic testing (saliva or blood).
When thinking of cancer, genomics can help identify how aggressive the cancer is, whether it will spread to distant locations in the body, and what type of treatment might be the most beneficial to the patient.
Hereditary Breast and Ovarian Cancer
Breast cancer is number four on the list of the most common cancers in the United States, with an estimated 1 million diagnoses made in 2018. Approximately 10,000 Michigan residents are diagnosed with breast cancer each year. Breast cancer is the second leading cause of cancer deaths in Michigan.
While ovarian cancer is number 14 on the list of the most common cancers in the United States, with an estimated 22,240 diagnoses made in 2018, it is the sixth highest cause of cancer deaths among cancers in Michigan. Approximately 700 Michigan residents are diagnosed with ovarian cancer each year.
BRCA1 and BRCA2 mutations are dominant germline mutations that are associated with Hereditary Breast and Ovarian Cancer (HBOC). BRCA1/2 mutations are responsible for 5 percent to 10 percent of all breast cancers and 18 percent to 24 percent of ovarian cancers.
BRCA1/2 mutations confer a lifetime risk of 38 percent to 87 percent for breast cancer (compared to a lifetime risk of 12 percent within the general population) and 11 percent to 39 percent for ovarian cancer (compared to about a 1 percent lifetime risk within the general population).
In addition to breast and ovarian cancers, BRCA mutations also increase the lifetime risk of prostate and pancreatic cancers.
A BRCA2 mutation can increase the lifetime risk of prostate cancer to 20 percent (compared to a lifetime risk of 15 percent within the general population); 5 percent to 10 percent of prostate cancers are considered heritable.
About 10 percent of pancreatic cancers are considered heritable. A BRCA2 mutation increases the lifetime risk for pancreatic cancer from 1.5 percent (for the general population) to 2 percent to 7 percent (for individuals with a BRCA2 mutation).
Using data obtained from the Michigan Cancer Surveillance Program (MCSP), the following are estimates to how many individuals were at risk of having HBOC in 2018, based on a personal history of cancer and what is known about gene mutations:
- Breast Cancer: 517 to 1,033 at-risk patients
- Ovarian Cancer: 102 to 136 at-risk patients
- Prostate Cancer: 361 to 721 at-risk patients
- Pancreatic Cancer: 178 at-risk patients
Lynch Syndrome
Colorectal cancer is the fourth most common cancer in the United States, with approximately 106,000 cases diagnosed in 2018. Approximately 5,000 Michigan residents are diagnosed with colorectal cancer each year. Colorectal cancer is the fourth leading cause of cancer deaths in Michigan.
Endometrial cancer is the fifth most common cancer in the United States, with approximately 66,570 cases diagnosed in 2018. Approximately 1,700 Michigan residents are diagnosed with endometrial cancer each year. Endometrial cancer is the 10th leading cause of cancer deaths in Michigan.
It is estimated that 5 percent to 10 percent of colon cancers may be attributed to Lynch syndrome (LS). LS gene mutations are also inherited in an autosomal dominant fashion; thus, an individual has a 50 percent chance of inheriting an MMR gene mutation from an affected parent.
Affected individuals will have substantial increases in their lifetime risk of LS-related cancers:
- 52 percent to 80 percent increase for colorectal cancer (men and women);
- 25 percent to 60 percent increase for endometrial cancer (women); and
- 10 percent to 12 percent increase for ovarian cancer (women).
Being diagnosed at less than 50 years of age is also more common for individuals with LS-related colorectal and endometrial cancers.
Using data obtained from the Michigan Cancer Surveillance Program (MCSP), the following are estimates to how many individuals were at risk of having LS in 2018, based on a personal history of cancer and what is known about gene mutations:
- Colorectal Cancer: 242 to 485 at-risk patients
- Ovarian Cancer: 102 to 136 at-risk patients
- Endometrial Cancer: 39 to 235 at-risk patients
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Surveillance Reports
Michigan Behavioral Risk Factor Survey
- MiBRFSS Standard Tables & Maps: Genomics Questions, 2020
(March 2022)
- MiBRFS Standard Tables: Colorectal Cancer Genomics Questions, 2018
(February 2022)
- MiBRFS Standard Tables: HBOC Genomics Questions, 2018
(February 2022)
- MiBRFS Standard Tables: Genomics Questions - Family History, 2015, 2016 & 2018
(February 2022)
- MiBRFS Standard Tables: Genomics Questions, 2015 & 2018
(February 2022)
- Michigan BRFSS Surveillance Brief (Vol. 12, No. 5): Breast and Ovarian Cancer Family History and Genetic Counseling
(October 2021)
- Michigan BRFSS Surveillance Brief (Vol. 12, No. 6): Colorectal Cancer Family History and Likelihood of Genetic Testing
(October 2021)
Hereditary Cancer Network Database
- Select Hereditary Cancers and Cancer Genetic Services in Michigan by Race, 2014-2018
(March 2022)
- Surveillance Data from the Hereditary Cancer Network (HCN) Database, 2016-2020
(February 2023)
- Surveillance Data from the Hereditary Cancer Network (HCN) Database, 2016-2019
(February 2022)
- Lynch Syndrome from the Hereditary Cancer Network (HCN) and BRCA Clinical Network (BRCA) Databases, 2008-2018
(February 2022)
- Ovarian Cancer Surveillance Status Report, 2008-2018
(December 2021)
- The American Indian Population: Genetics Services Surveillance, 2008-2018
(November 2021)
- Triple Negative Breast Cancer (TNBC) and Genetic Testing from the Hereditary Cancer Network (HCN) Database, 2014-2018
(June 2021)
- Ashkenazi Jewish Ancestry and Cancer from the BRCA Clinical Network and Hereditary Cancer Network (HCN) Databases, 2008-2018
(March 2021)
- BRCA1 and BRCA2 Testing Referral Indications among Patients in the Hereditary Cancer Network Database, 2008-2017
(January 2021)
- Known Familial Mutations and Genetic Testing among Patients in the Hereditary Cancer Network Database, 2008-2017
(November 2020)
- Findings from the Hereditary Cancer Network (HCN) Database, 2016-2018
(October 2020)
- Findings from the Hereditary Cancer Network Database, 2016-2017
(November 2019)
- Genetic Counseling and Testing among Males: Results from the Hereditary Cancer Network Database, 2008-2017
(September 2019)
- Racial Differences in the Utilization of Genetic Counseling Services among Patients in the Hereditary Cancer Network Database, 2008-2017
(September 2019)
Michigan Cancer Registry Database
- Geographic Distribution of Select Hereditary Cancers and Cancer Genetic Services in Michigan by Race, 2014-2018
(February 2022)
- Geographic Distribution of Select Hereditary Cancers and Cancer Genetic Services in Michigan, 2013-2017
(April 2021)
- High Incidence and Low Utilization Regions: Hereditary Breast and Ovarian Cancer in Michigan, 2013-2017
(March 2021)
- Geographic Distribution of Select Hereditary Cancers and Genetic Services, 2012-2016
(January 2020)
Please Note: These are our most recent surveillance reports. Earlier reports are available via the Resource Archive on our website.
- MiBRFSS Standard Tables & Maps: Genomics Questions, 2020
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Webinars, Posters, and Slide Presentations
Webinars
Ovarian Cancer and Genetic Services in Michigan: How Are We Doing? What Has Worked to Increase Genetic Counseling Referral Rates? (Oct. 14, 2021; co-hosted by MDHHS Cancer Genomics Program and Michigan Cancer Genetics Alliance)
- Part 1 (00:00 - 13:55): Ovarian Cancer and Genetic Services in Michigan: A Surveillance Report, 2008-2018 Using Data from the BRCA Clinical Network and Hereditary Cancer Network Databases (Jessica Fritzler, MPH, epidemiologist, MDHHS Cancer Genomics Program)
- Part 2 (13:56 - 29:40): Implementation of Strategies to Increase Genetic Counseling Referral Rates for Ovarian Cancer Patients (Kara J. Milliron, MS, CGC, lead genetic counselor, Breast and Ovarian Cancer Risk Evaluation Program, Michigan Medicine Rogel Cancer Center)
- Part 3 (29:41 - 45:50): Question-and-Answer Session
Posters
- Genetic Counseling Among Males: Results from the Hereditary Cancer Network Database, 2008-2017
(March 2020)
- The Hereditary Cancer Network Database: The Journey So Far
(May 2019)
Slide Presentations
Please Note: These are our most recent staff webinars, posters, and slide presentations. Earlier resources are available via the Resource Archive on our website.
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Additional Resources
Michigan Resources
More publications and presentations related to cancer genomics in Michigan can be found on the Michigan Cancer Genomics Program website. Also be sure to visit:
Federal Government Resources
To learn more about genomics, visit:
- Genomics and Precision Health (Centers for Disease Control and Prevention, Office of Public Health Genomics)
- About Genomics (National Institutes of Health, National Human Genome Research Institute)
- MedlinePlus: Genetics (National Institutes of Health, National Library of Medicine)
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Contact Us
To learn more about the MDHHS Cancer Genomics Program or to get accessibility assistance reading any of the documents on this page, please contact:
Beth Anderson, MPH, Manager
Chronic Disease Epidemiology Section
Lifecourse Epidemiology and Genomics Division
MDHHS Bureau of Epidemiology and Population Health
E-mail: AndersonB@michigan.gov
Phone: 517-335-9785
Last updated: 03/02/2023
Please Note: Funding for this program was made possible (in part) by the Centers for Disease Control and Prevention. The views expressed in written materials, publications, or webpages do not necessarily reflect the official policies of the U.S. Department of Health and Human Services, nor does the mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.