(RxWiki News) Thanksgiving coincides with National Family History Day. How well do you know your health heritage, those risks for various diseases and health conditions that are your genetic legacy?
If your doctor asked for your family's health history, could you provide it?If you're like a lot of people in the U.S., you probably don't know a lot of details about your health heritage. Such information is becoming increasingly important as our understanding of the genetic underpinnings of health conditions grows.
While more and more tests are being developed to determine if your genes put you at risk for such health disorders as heart disease, cancer, diabetes or arthritis, the results of genetic tests must be considered in the context of a family's particular medical history. Carrying a gene that predisposes you to, say, breast cancer is only one piece of the puzzle. Another piece is what scientists call the gene's expression, a measure of how influential that gene is in your body.
To best utilize genetic information, research has shown a family medical history should include specific diagnoses and ages of onset for every disease or condition that first- and second-degree relatives have experienced; even such information from some third-degree relatives could be highly useful. Sadly, this information today is either lost or not fully disclosed because we lack an easy, uniform, secure way to collect and maintain accurate and complex health information.
But soon that could change.
With funding from the National Cancer Institute, part of the National Institutes of Health, researchers at the University of Virginia are building the Health Heritage Web site. It will enable visitors to enter their family medical histories so other family members and their health care providers can use this information when dealing with medical issues.
The Web site, which will be free to consumers, is built on previous research funded by the Robert Wood Johnson Foundation. Health Heritage should be online by 2012.
Imagine your mother is diagnosed with diabetes. Naturally, you begin to wonder if she's the first person in your family to develop the condition and if you now have a higher risk for developing it yourself. To help you find these answers, you could create a Health Heritage account, to which you input your personal health information and the health information you know about members of your family. Then, the Web site could at your discretion collect diagnoses and age of onset information about you and your relatives using secure links to verifiable sources. You would then receive personalized recommendations based on the data gather.
While Health Heritage is being developed to be compatible with existing electronic health and personal health records, it will also protect that information now enabled by law. That means employers and health insurance companies could not view the information in your Health Heritage account without your permission.
Over time, this reservoir of health information could become a living legacy for your children and grandchildren. It could help personalize preventive health measures and medical treatments for your family.
Of course, no computer program could ever replace the skilled judgment of an experienced health care provider or geneticist. But given that we've only at the tip of the proverbial iceberg when it comes to genetic information, Health Heritage can be a way for patients and their team of health professionals to keep up with the latest developments that might impact their health.
Not only can the Health Heritage Web site encourage families to build mutually beneficial family health histories, but by doing so, families may also recognize the value of maintaining and controlling their own medical records. Currently, a patient's medical records are maintained by the hospitals, clinics, private practices and pharmacies where she or he receives care. If patients maintained more control over their medical records, they would decide who saw any or all of their health data and other personal information.
While laws give us the right to request our medical information from the doctors or hospitals that treat us, few of us do. You can start developing your own family health history by learning how to collect this information. Then take advantage of holiday family gatherings to add more information by interviewing members of your family and by showing them how they too can obtain copies of their health records. Make sure they understand that you're not being nosy--you're just trying to help the whole family understand their health heritage.
"Knowledge is power," Sir Francis Bacon wrote in the 16th century. That aphorism is still true here in the 21st century. Knowing your health heritage can empower you to preserve and protect your most precious commodity: your health.
Resources
- Information for consumers about the Health Insurance Portability and Accountability Act (HIPAA) of 1996 -- www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/index.html
- Sample letter to request medical records -- www.privacyrights.org/Letters/medical2.htm
- State-by-state guide to obtaining medical records -- hpi.georgetown.edu/privacy/records.html
