Genetic Counseling Patient Resources & Assessments

Many individuals and families who see genetics providers have concerns about the privacy and confidentiality of their information and how genetic information might be used by third parties (insurance companies, employers, etc.). There is public concern about the possibility that a health insurance company or employer could use the results of a genetic test to discriminate against an individual. There are laws that exist to protect against genetic discrimination in the realms of health insurance and employment.

There are websites that have additional information about genetic discrimination:

• National Human Genome Research Institute, Genetic Discrimination Fact Sheet
• National Conference of State Legislatures
• Genetic Alliance
• Genetic Information Nondiscrimination Act
• National Society of Genetic Counselors
• American Cancer Society
• National Cancer Institute
• Colon Cancer Alliance

Find a list of online risk calculators below to estimate personal risk of certain cancers.

Breast Cancer Prevention – US National Surgical Adjuvant Breast and Bowel Project:
Estimates a woman’s breast cancer risk over the next five years and up to the age of 80 for women 35 to 84 years of age.

Harvard School of Public Health Disease Risk Index:
Estimates your risk of developing cancer, diabetes, heart disease, osteoporosis, and stroke.

NCI’s Breast Cancer Risk Assessment Tool:
Estimates a woman’s risk of developing invasive breast cancer.

NCI’s Colorectal Cancer Risk Assessment Tool:
Estimates an individual’s risk to develop colorectal cancer.

NCI’s Melanoma Risk Assessment Tool:
Estimates an individual’s risk to develop melanoma.

It is often helpful to gather detailed information about your family history of cancer before your initial genetic counseling appointment. Please complete our Cancer Risk Evaluation Packet and bring it with you to your appointment. Please document the specific cancer diagnosis as accurately as possible, including the individual's age at the time of the diagnosis. For families with a history of colon cancer and polyps, it is helpful to know who in the family has had a colonoscopy and whether or not polyps were identified. For individuals with polyps, the genetic counselor will want to know the number of polyps and the type of polyp, if possible. Some families are able to obtain a lot of information about their relatives, but sometimes detailed information is unavailable-please provide as much information as you can.

If a member of your family has already had genetic testing, it is important to bring a copy of the test result to your appointment. You can also fax relevant test results or pathology reports to the genetic counselor before your appointment. Please be sure to write your name on the top of any faxed material.

Please fax relevant information to 781-744-2982, Attn: Lahey Genetics.

An accurate family medical history is an important tool for genetics providers. If certain diseases affect one generation, it can be more likely that the next generation will be similarly affected. A healthcare practitioner can use family history information to provide more accurate risk assessments and to help guide screening and prevention recommendations. A family history is often recorded by drawing a “pedigree.” A pedigree uses symbols to represent family members and relationships.

If you have a personal or family history of cancer, you can print out and complete the Cancer Risk Evaluation Packet created by the Familial Cancer Risk Assessment Center at Lahey Hospital & Medical Center.

For additional information on how to document your family history and interactive family history tools, please use the following links:

Your Family History – Your Future: General information about how to gather and document your family history created by the National Society of Genetic Counselors. 

My Generations: An interactive tool created by Evanston Northwestern Healthcare to document your family history of cancer.