Updated: Dec 31, 2018
Are you aware that (US) Thanksgiving is Family Health History Day? Beginning in 2004, the Surgeon General declared Thanksgiving Day to be a day where families not only gather, but talk about the importance of knowing your health history to ensure a longer and healthier future. The website was updated as of September 2018. As genealogists and family historians, we can play an important role in helping family members understand health risks. Each time you collect a death certificate and note the cause, you add to the body of knowledge.
I’ve been writing about health history every year since I began my blog in 2007, because I feel strongly that this is one of the most important parts of our genealogical research, and one that can help our families (even those not interested in family history).People begin doing genealogy for many reasons, but for me, one of the key reasons was health history. My niece, Karen, died of Cystic Fibrosis at four years old. Prior to that time, we had no idea that this genetic disease was in our family. The Cystic Fibrosis gene is recessive, so both parents must carry the gene for the disease to be manifest in a child. My sister and my brother-in-law carried the gene, but what about me? At the time there was no test for a carrier. By the time a test had been developed for carriers, both of my parents were deceased, so we don’t know which carried the gene. Could my genealogy research provide any information? I have a fairly strong hypothesis at this point, but haven’t been able to prove it. Should a DNA match on the line of my hypothesis show a incidence of CF, it would strengthen the argument. According to an article in the Irish Examiner on 19 March 2017, Ireland has the “highest incidence of Cystic Fibrosis in the world.”
Why is this important? I have three daughters…do I carry the gene and possibly pass it on to my children? When the carrier test was developed, my sister, who as an RN and worked in the Cystic Fibrosis Clinic in Connecticut, tested both my younger sister and me. The results...I am a carrier, but my younger sister is not. With all of the discussion on DNA over the past few years, you probably have a basic understanding of genetics. You receive approximately 50% of your DNA from each parent. Exactly what 50% is random so unless you are an identical twin, you and your siblings won’t have exactly the same 50%. What about my daughters? It turns out that my oldest and youngest are carriers, but my middle daughter is not. My younger daughter’s husband was tested and he is not a carrier. Should they have children, the gene could be passed, but a child would not have the disease. Good to know.
Are there other things that show up in your research? We collect lots of information, including death certificates. Do you routinely record cause of death? You should. It is known that many diseases have a genetic component, think breast cancer for one. That doesn’t mean that you will or won’t get the disease based on your genes, because there is also an environmental component to most diseases, but you should be aware. I can trace stomach cancer in my family back four generations on both my maternal and paternal sides. Because I was aware of that I was tested and had a condition that if left untreated, could have resulted in another case. Through medication and regular screening, there has been no progression of the condition in close to 20 years. Had I not known, I could have ended up like my aunt who died of stomach cancer in the 1990s. Is there a history of cancer, heart disease, diabetes, or other illness in your family? Creating a family health history can help you and other family members identify risks. As my daughters became independent looking for their own doctors, they would call and ask about their health history. I would get a phone call…what did Nanny die of? So I created a medical pedigree for each of them to provide to their doctors.
Some things that make this pedigree different from the familiar genealogical pedigree is that is has no names. Males are squares, females are circles. A diagonal line indicates deceased. For individuals, note any medical conditions, and if deceased, the age at death and the cause. This is also the time to go wide rather than deep. The health of aunts, uncles and cousins is important. See what patterns emerge and discuss these with your family and your doctor.
The chart above is hand drawn, but there are tools to assist you in doing this at the Department of Health and Human Services. The Family Health Portrait Tool allows you to take the information you’ve collected and create both a chart and list of health information. The information you input is not saved on the site, but stored on your computer, so if you go back to update the information, you reload it from your computer.
Since Thanksgiving Day is the time when so many families gather together, it’s a good time for you to share what you know about the family health, and to solicit information from other family members.
I also tested with 23andMe back in 2009 and got an extensive health history, which included my carrier status for Cystic Fibrosis (positive), as well as for identified breast cancer (BRACA), Alzheimers and Parkinson's genes (all negative). There may be other genes not yet identified that relate to these diseases as well as environmental causes. I also learned about various traits and likely sensitivity to various drugs as well as my increased or decreased risk for other health related issues. I was able to review these findings with my doctor. As you probably know, 23andMe was stopped from doing these tests for a while, but they have reintroduced many of them based upon approvals from the FDA. This test is not meant to be diagnostic, but I found it helpful. 23andMe is currently running a special (through Thanksgiving) on the Ancestry portion of their test ($49 when you purchase two or more kits - regular price $99). The cost of the Ancestry plus Health is $199. Please make sure you read all of the notices on their website prior to ordering.
If you have already tested at another company, you may be able to upload your results to an app called Promethease. They, also state that the results are for “education and research purposes only.” Keep in mind, if you don’t want to know about your risk for certain diseases, don’t take these tests.
If you’re interested in learning more about how your genes affect your health, Dr. Thomas Shawker’s book Unlocking Your Genetic History is an excellent resource.
Happy Thanksgiving and Happy Hunting!
Registration is up and running for the 2019 Ireland Research Trips. If you’re interested download the registration form and mail it with your deposit. Each trip is limited to 15 researchers.