By Robin L. Bennett, MS, CGC

Reviewed by Jennifer Graham, MS, CGC
Last updated August 28, 2000

Your family's medical history holds important information about your own health. Many common conditions (such as heart disease, cancer, diabetes, mental illness, osteoporosis, birth defects, and memory loss) are passed down through families. By knowing what diseases may occur in your family — and sharing this information with your doctor — you and your family can receive the best possible health care. What's most important when collecting your family medical history is obtaining accurate, complete records.

The Benefits of Knowing Your Family's Medical History

Your family's health information can help you in many ways. For example, if a medical condition runs in your family, you may receive the following benefits:

• Better screening. You or other relatives may be offered disease screening at an earlier age than the general population. For example, breast cancer screening may begin in the mid-20s instead of in the 40s and 50s, or colon cancer screening may be offered in the 20s and 30s instead of in the 50s.
• Better medical prevention. There may be medications or vitamins that you can take to help prevent a condition. For example, a doctor may suggest taking oral contraceptives to reduce a woman's chance of developing ovarian cancer.
• More informed pregnancy planning. A couple may be able to make more informed decisions about becoming pregnant because of family health information.
• Psychological well-being. Knowing your family medical history puts you in control of your health and of your screening schedule for diseases that you know run in your family. With this information, you also know what diseases you should stay informed about to ensure the health of yourself and your family.

top

What Information Should I Collect?

For the most accurate family medical history, you should gather as much information as possible about your family members and include as many generations as you can. At a minimum, your health care professional will want to see a three generation family history.

For any family members with a disease, you should get information about that person's children or siblings. For each family member, some information is essential in order to assemble a family tree:

• Names: First and last names (including all married and maiden names for women where appropriate).
• Age: The current age, or age at death
• Relation: Exactly how people are related to each other. Make sure you note if brothers and sisters have different parents (they are half-siblings), or if people were adopted.
• Twins: Note if twins are identical or fraternal. (Identical twins have the exact same genes, whereas fraternal twins only share as many genes as non-twin brothers and sisters.)
• Marriages: Note if any family member married a blood relative (for example, two first cousins who marry).
• Ancestry: The country your ancestors are from. Be as specific as possible. For example, if your ancestors are Native American, note the tribal name; or if you ancestors are Jewish note whether they are Ashkenazi Jews (from eastern Europe) or Sephardic Jews (from Spain or certain middle eastern countries). (Some genetic conditions are more common or easier to test for in certain ethnic groups.)

Additional information about illnesses and treatment can help clarify your risk for certain diseases:

• Death: The cause of death, and if an autopsy was performed. Also note any history of miscarriages or babies who are deceased.
• Illness: Any illnesses, birth defects, or mental retardation, and if possible, the names of the hospital or medical centers where the relative was treated. Also record the age the illness occurred, and ideally the general treatment.
• Surgery: Any surgery, the age performed, and the reason why.

Most of the information you collect on a family tree tells you about your genetic risk for certain diseases. However, some diseases, such as heart disease, lung cancer, or diabetes, are strongly associated with certain environmental factors. Where possible, you should record these lifestyle factors on your family tree. This information may help your doctor or genetic counselor determine whether a disease is likely due to a genetic predisposition that runs through your family, or due to the lifestyle of people in your family. These environmental factors include:

• History of tobacco use.
• History of alcohol or drug use.
• History of obesity.
• Occupation (this give a clue as to any toxic exposures that can cause disease, for example exposures to chemicals or asbestos).

The most important thing about collecting medical information is ensuring that your records are complete and accurate. When collecting a relative's cause of death from family members, they may mention one disease as the cause of death, but that disease may just be a result of a different disease — one that runs in your family. For example, the family member may remember that a deceased relative had bone cancer. But if the original cancer started in breast, then you and your family may be at risk for breast cancer rather than bone cancer. For this reason, the more information you can collect about your family's medical history, the more accurate your genetic counselor can be in determining your own risk.

Genetic Health can help you compile your family tree into a family medical history that will serve as a valuable tool for you, your relatives, and your healthcare providers.

Assess Your Risk With the TreeBuilder Tool

By becoming a member of the Genetic Health community, you also receive easily understandable summaries of the latest research and medical developments, tailored to convey the news that's relevant to diseases that affect you and your family.

How Do I Get My Medical Records

All hospitals, and most doctors' offices, have a release form that you can use to request your medical records. In most cases you can request the medical information directly from the doctor's office or medical records department at a hospital. For information about a cancer, you should send your request to the hospital's pathology department.

Keep in mind that offices may only keep records for a certain amount of time as required by that state. You should call the office to be sure your records still exist. In many cases you can simply send a letter that includes the relevant information rather than using a specific form. This letter will need to include:

• Your birth date.
• Your full name (including any information about name changes).
• Time frame when you were seen (for example July 1998 to September 2000).
• The specific types of information you want sent (such as reports from a brain scan, your cholesterol levels, etc.).

You can have your records sent to yourself to share with a healthcare professional, or directly to a health professional. If you do have the records sent to a health professional, let them know to expect the files.

top

How Do I Get Medical Information About My Relatives

Medical Records

You can only access medical records for other members of your family with their permission, or with the permission of the next-of-kin for a deceased family member. Each state handles next-of-kin slightly differently, so you should check the requirements in your state. However, the usual legal order for next-of-kin is:

• The spouse
• Children or parents
• Grandchildren
• Siblings
• Nieces or Nephews

If you are not the next-of-kin, you will need the signature from the legal next-of-kin along with the medical release form. You may also need to attach forms indicating your legal right to the medical records, for example, if you or the next-of-kin is the executor of the estate. Each medical facility has slightly different regulations about the paperwork required for obtaining a relative's medical records. It is best to contact the medical facility before submitting a request.

Often there is no charge to request medical records if the medical records are sent directly to a health professional. If you request that the medical records be sent to you, there may be a fee. The cost can be surprisingly expensive if there are lots of medical records because there are per page copying charges and sometimes additional charges for the time of the person making the copies.

In some cases, the information you need will be on the death certificate, which is easier to get than the medical records. If you are not the next of kin of the deceased, you should consider getting the death certificate first. If that does not provide the information you need, then try to obtain the medical records.

Death Certificates

You can obtain death certificates from the vital records office in the state where the individual died. These can be valuable especially when medical records are not available. Usually death certificates not only contain information about the cause of death, place of death, and the age at death, but also may direct you to the hospital where the deceased individual received medical care (from which you can then request records). Death certificates may or may not include information about other medical conditions that did not contribute to the cause of death.

There is often a small fee for a copy of the death certificate, although noncertified copies often cost less than certified copies. You do not need to obtain a certified copy of the death certificate unless you plan to use this record for a legal document.

Obituaries

Obituaries are not only an interesting historical record, but they may contain information about the deceased such as age at death and cause of death. Obituaries may be found through archives of the local town newspaper.

Military records

The National Personnel Records Center stores medical treatment records of retirees from all services, as well as records for dependents and other people treated at Naval medical facilities. To obtain these records, you will need the social security number of the person who was in military service.

top

Avoiding Common Errors in Collecting Medical Information

The best place to start collecting medical information is by talking to family members. However, reports of medical information from relatives could be inaccurate, especially if the information is about a distant relative. Information may also not be accurate regarding sensitive topics like a family history of mental illness, pregnancy loss, or cancers that effect reproductive organs (testes, ovaries, uterus, etc.). This may be due to a family reluctance to talk about these issues, or to misinformation that has persisted in the family dating back to the time of the illness.

It is important to find out the exact illness in order to generate an accurate medical history. Some illnesses — such as breast cancer — that families may not discuss openly can be associated with an inherited cause of cancer. It can benefit the health of the entire family to have this information.

top

Some family members may be hesitant to provide sensitive medical information. In this case, you do not need to know every detail about a relative's treatment for a medical condition; sometimes asking for very specific information is easier to obtain. For example requesting the pathology report on a tumor that was removed, or requesting a surgical report. Also, when you share your family tree with your health professional, you can use initials or first names to help maintain family confidentiality. Your health professional can always request more specific information if necessary.

Helpful hints

Remember to include your name on the family tree as the historian of the information, and date your tree. Putting an arrow pointing to yourself on the tree will help your health professional identify you on the chart. Keep your family health information up to date by adding new information to your family tree as it arises. Make sure you add the date you recorded this new information.

top

Resources

For obtaining medical records from the military: National Personnel Records Center

For addresses of where to send requests for death certificates in each state: www.vitalrec.com

References

Bennett, R.L. (1999). The Practical Guide to the Genetic Family History. New York: John Wiley and Sons.

Bennett R.L. et al., (1995) Recommendations for standardized pedigree nomenclature. American Journal of Human Genetics. 56:745-752.

Carlson, F. (1997). Growing Your Family Medical Tree. Keep It Simple Solutions, Lafayette Hill, PA 19444-0136.

Krause, C. (1995) How Healthy is Your Family Tree? A Complete Guide to Tracing Your Family's Medical and Behavioral Tree. New York: Simon & Schuster.

Nelson-Anderson D.L. (1995). Genetic Connections: A Guide to Documenting Your Individual and Family History. Washington, MO: Sonters Publishing.