Collecting Health Information
Collecting and Sharing Health Information
Inherited mutations can be passed down to children from either parent, so it's important for you to know the medical history of relatives on both sides of the family. It's equally important to share your health information with all your blood relatives.
This page covers the following topics:
Important medical information
Medical records are very personal. Not everyone is comfortable sharing health information with other people, even relatives. Medical information that should be shared includes:
Type of Information to Collect and Share |
Importance |
Which family members were diagnosed with cancer. |
Knowing how many and which relatives were diagnosed with cancer can help relatives decide about genetic testing and understand their risks for cancer. |
Information about cancer diagnoses and pathology reports. |
Certain cancer types and even subtypes are more closely linked to genetic mutations than others. A relative's pathology results may provide additional clues about cancer risk and increase access to certain screening procedures or screening clinical trials. |
Age of cancer diagnosis. |
Cancer at a younger than average age may be a sign of an inherited mutation. It's important to collect and share the ages of every cancer diagnosis in the family. |
Information about the type of genetic testing that was performed. |
Different genetic tests look for mutations in different genes. Knowing which test relatives had can help guide decisions about additional testing for family members. |
Test results and report, including negative results. |
Genetic testing laboratories provide results that identify the gene (e.g., BRCA2, PALB2, CHEK2, MSH2, or others), list the type of mutation and the location on the gene where the mutation was found. Sharing this information can help assure that genetics experts order the proper test. Even a negative genetic test can help relatives understand their risk. |
Other diseases or conditions that may run in the family. |
Other conditions such as diabetes, heart disease, high cholesterol and young-onset Alzheimers disease may be hereditary. |
The more detailed the information you can collect, the more helpful it may be. Hospitals are not required to retain records beyond 10 years, but sometimes they have older records available.
It’s equally important to share your own medical information with relatives. Request copies of your records and lab reports to keep for your personal records. A genetics expert can determine which information will be most helpful to your relatives.
Which relatives to share with
The term “degree of relatedness” describes how closely a family member is related to you. First-degree relatives share half of your , while second-degree relatives share a quarter of your . The closer the degree of relatedness, the more likely a relative is to have inherited the same mutation you have. If possible, you should collect medical information from and share your medical information with the following relatives:
Degree |
Relative |
% of DNA shared |
First-degree relatives |
Siblings |
50% |
Parents |
50% |
|
Children |
50% |
|
Second-degree relatives |
Half-siblings |
25% |
Grandparents |
25% |
|
Grandchildren |
25% |
|
Aunts |
25% |
|
Uncles |
25% |
|
Nieces and nephews |
25% |
|
Third-degree relatives |
Cousins |
12.5% |
Great grandparents |
12.5% |
|
Great-aunts and great-uncles |
12.5% |