It's In The Genes: Record Your Family Health History
What is a Genetic Disease?
Genetics - it's a popular, albeit complicated, topic in healthcare these days, especially since the full mapping of the human genome (the complete set of human genes), advances in genomic research, and the hopeful Cancer Moonshot Initiative (now known as the Biden Cancer Initiative). But how does it affect your health as an individual?
A genetic disease is caused by a harmful change (mutation) in a gene. Genes are small cell structures that define how your body looks and works. Examples of genetic diseases are sickle cell anemia, and muscular dystrophy. The full mapping of the human genome furthers life-saving research of the genetic basis of almost 5,000 diseases.
Do I Need a Family Health History?
Ideally, we all do. A family health history is more than just jotting down when you get a cold or the flu. It's a family tree medical history that details the diseases and health conditions that occur in a family over time, as well as lifestyle habits like weight, smoking, drinking, and living environments. The history shows if you, your children, or your grandchildren might be at risk for developing serious health problems. Your doctor can use this history to help gauge your risk of diseases that run in your family. A family health history can be passed from generation to generation to help your family members stay healthier.
What Information Do I Need in a Family Health History?
Try to gather information from as many surviving generations of family as possible, preferably at least three. Gather data from all relatives and be sure to update over time. Include information such as:
- Sex, date of birth, and ethnicity
- Known medical conditions and age diagnosed
- Mental health, alcoholism, drug abuse disorders
- Pregnancy complications
- Lifestyle habits like tobacco use, exercise, and alcohol use
- If deceased, age at death and cause of death
How Will My Doctor Use My Family Health History?
A family health history allows you and your doctor to identify illness patterns that might be important to your own health or someone in your family. Your doctor might use your family health history to:
- Look for your risk of a certain disease, and if it can be passed on.
- Suggest lifestyle, exercise, or diet changes.
- Determine if you need tests - genetic or otherwise.
- Identify family members who may be at risk of a disease, especially at an earlier age.
- Identify unexpected illnesses.
Is It All in the Family?
If you have a disease, it doesn't always mean that you will pass it on. Genes, lifestyles, and environment can all influence the development of disease. Common health problems with a genetic influence that may run in families include:
Genes: Who Wears the Pants in the Family?
Some diseases are clearly genetic and come from a mutation in a gene inherited from one or both parents. Chromosomes contain genes, the basic physical unit of inheritance. Humans have 23 pairs of chromosomes that contain over 20,000 genes. Genes are passed down from parents to children, and they contain information that influences what set of traits a person will have.
Examples of genetic diseases passed through genes are Huntington's disease, cystic fibrosis, and muscular dystrophy, but these genetic disorders are relatively rare. Most genetic diseases are caused by new mutations or changes to the DNA.
How Do Genes Cause Disease?
Some disorders are caused by a mutation in a single gene (monogenic), but are relatively rare compared to "multifactorial" diseases like diabetes and heart disease. Examples of monogenic diseases include sickle cell, cystic fibrosis, and Tay-Sachs disease. The mutated gene may be passed down through a family. Subsequent generations of children may inherit the gene from one or both parental chromosomes that leads to disease.
Monogenic diseases may be "dominant", meaning that just one gene must be passed down from either the mother or father for the disease to be present, or "recessive", meaning the mutated gene must be inherited from both parents.
What Diseases Are Linked With Genes?
As research expands on the human genome, scientists are learning that nearly all diseases may have a genetic component. But not all genetic diseases are strictly due to one mutated, inherited gene.
For example, "multifactorial inheritance disorders" are caused by acquiring small variations in genes, often associated with older age, environmental factors, or lifestyle circumstances. Heart disease, diabetes, and most cancers are examples of such disorders. Behavioral disorders such as alcoholism, obesity, mental illness and Alzheimer's disease are also under research to determine if there is a genetic contribution.
The Biden Cancer Initiative (aka: the "Cancer Moonshot")
Researchers are trying to remain hopeful and exicted about the future creation of a large genomic dataset that can be used to examine the underlying causes of disease and develop treatments that target genetic mutations. However, the future of medical research under the Trump administration hangs in the balance.
In September 2016, Vice President Joe Biden laid out plans to foster collaborative research, clinical trials, and access to investigational treatments in the "Cancer Moonshot" initiative, now called The Biden Cancer Initiative since Obama left the Presidency. World-renowned cancer centers, such as MD Anderson Cancer Center in Houston, Texas, will help lead these programs to push forward new targeted treatments that are extending lives in cancer patients. It is hopeful that The Biden Cancer Initiative, and other novel, life-saving research, will continue to be funded even though Trump has proposed a $5.8 billion cut to the National Institute of Health.
How Should I Approach This Task?
No matter the political climate, you should still remain positive about the future of genomics and how it can help you and your family. But, gathering family health information can be a touchy subject. Large get-togethers at holidays or family reunions may be a good time to explain the project most efficiently - and fatce-to-face. But don't expect everyone to be on board initially. Some family members may be reluctant to share information, and that is their right.
If you notice resistance, emphasize the purpose is to create a tool to enable better health over generations. Respect everyone's privacy. Don't fill in unknown data with a guess. Ensure that the data is secure and protected if put online. The U.S. Surgeon General's 'My Family Health Portrait' is a secure, private, internet-based tool that may make it easier for you to record and share your family's health history.
Finished: It's In The Genes - Record Your Family Health History
- NIH Senior Health. Creating a Family Health History. Accessed 9/30/2016 at http://nihseniorhealth.gov/creatingafamilyhealthhistory/whycreateafamilyhealthhistory/01.html
- Herper M. Trump NIH Cuts Would Be 'Catastrophic Event,' Says Bush-Era NIH Chief. Forbes. Accessed March 16, 2017 at https://www.forbes.com/sites/matthewherper/2017/03/16/trump-nih-cuts-would-be-catastrophic-event-says-bush-era-nih-chief/#6fb31e44789c
- Smugga-Otto K. Will Biden’s Cancer Moonshot Survive the Trump Administration? Discover Magazine. Accessed March 16, 2017 at http://blogs.discovermagazine.com/d-brief/2017/02/02/cancer-moonshot-trump-administration/#.WMskiRLyuqA