CEDAR RAPIDS — Health concerns prompted Nina Kaegbein to search for her roots.
“I have COPD (chronic obstructive pulmonary disease) and seizures,” said Kaegbein, 52, of Cedar Rapids. “I want to know what’s in my health background.”
Because she was adopted, that quest isn’t simple, but health experts recommend everyone learn as much as they can about their family’s medical history.
“It’s important because there are a lot of things we can watch for and prevent,” said Shana Coker, a nurse practitioner in oncology genetics at Mercy Medical Center’s Hall-Perrine Cancer Center.
For example, someone with a family history of high cholesterol can work on lowering it before it becomes a problem, Coker said. Conditions such as diabetes, heart disease and some cancers also tend to run in families.
Tests are available for cancer syndromes, Coker’s area of expertise. Patients with a gene mutation can start cancer screenings at an earlier age or go so far as to have a proactive mastectomy in the case of breast cancer, she said.
The Office of the U.S. Surgeon General, which offers online tools to create a family health portrait, notes that 96 percent of Americans in a recent survey said it is important to know their family history, but only one-third of Americans have ever tried to gather and write down their family’s health history.
Health experts say the holidays — particularly when family members gather for Thanksgiving — are an opportune time to share and record that information.
Generations of data
Julie Thompson, a nurse practitioner at St. Luke’s Hospital and the Helen G. Nassif Community Cancer Center, said uterine, ovarian, breast and colon cancer are the top four cancers that tend to run in families.
“If there is a history of those types of cancer, especially if someone was diagnosed under age 50, that can be a red flag,” Thompson said.
She looks at three generations of family members or “as far as we can go” in recording a patient’s family history.
Sometimes that is difficult to do, especially for past generations when talking about cancer and other diseases was taboo.
Or, Thompson said, relatives might know that an aunt died of cancer, but didn’t know if it was uterine or colon or stomach cancer.
An initial consultation for genetic counseling takes about 1 to 1 1/2 hours.
Counseling services are free, but follow-up care is not, although some health insurance covers the expenses.
The most common genetic screenings use a blood test, for which there is a laboratory fee.
Commercial tests that customers can do on their own require little more than a saliva sample, but health experts do not advocate their general use.
“It’s a little bit premature, but companies are doing it,” said Sandra Daack-Hirsch, a clinical geneticist and University of Iowa assistant professor of nursing. “Even though we can test for these things, it’s difficult to interpret what they mean without the context of a family history. If they’re concerned at all, they should talk about it with their practitioner.”
Daack-Hirsch, the State Hygienic Laboratory’s environmental and public health ambassador, said people can use a simple form on the U.S. Surgeon General’s website at hhs.gov/familyhistory to start gathering their family history.
Some patients are referred to genetic counseling by a doctor, though a referral is not needed.
Kimberly Noble Piper, executive officer for the Iowa Department of Public Health’s Center for Congenital and Inherited Disorders, said visiting a genetic counselor should not be the first course of action for people concerned about their medical history.
Piper recommended that patients discuss their family history with their health care provider.
“We recommend even if people are adopted that they do a family health history,” she added.
Piper noted that alcoholism, smoking and domestic abuse can have environmental origins, so it is important to know if those are pervasive in families, and as with other conditions, try to reduce those risks.
Iowa’s adoption records are closed, Piper said, which can make it difficult for adoptees to find out anything about their birthparents, including medical information.
Kaegbein paid for a newspaper advertisement to find what she could about Barbara, the 16-year-old who gave birth to her at Mercy Hospital in Cedar Rapids on Jan. 13, 1960.
Both of her adoptive parents have died, and wanting to know more about her medical history became more pressing once she had three children of her own.
While Kaegbein is open to establishing a relationship with her birthparents, her quest is more fundamental.
“I know no medical history,” she said. “I’d like to know more about me.”
For more information:
- Iowa Department of Public Health: http://www.idph.state.ia.us/genetics/family_history.asp
- U.S. Surgeon General’s web site: http://www.hhs.gov/familyhistory/
- University of Iowa Children’s Hospital Pediatrics/Division of Medical Genetics: 1-800-260-2065.
- St. Luke’s Hospital/Helen G. Nassif Community Cancer Center genetics counselor: (319) 369-7816
- Mercy Medical Center’s Hall-Perrine Cancer Center genetics program: (319) 221-8689.
These diseases tend to run in families: