Happy Aging is a unique series focused on how to help you age well. These stories have been created in cooperation with AARP and Word In Black.
Genetics tell a powerful story about our health, from basic prenatal needs and nutrition to end-of-life care. In the mid-2000s, companies began to popularize genetic testing kits as a way to trace ancestral lineage. Today, genetic testing has expanded to help people determine if they are living with – or could potentially live with – certain medical conditions. Dr. Altovise Ewing is a genomic health equity scientist and genetic counselor. Growing up in rural Tennessee, she remembers having to drive more than one hour to receive medical care. Now, she is hoping to make healthcare more accessible to aging African Americans.
WIB: When we hear the term “genetic counseling,” we might think of DNA tests. What else does the field include?
Ewing: It’s a process where we help individuals understand, potentially, their hereditary risk for various conditions. We’re going on a journey together to evaluate one’s family health history and personal health history to see if there are some clues available that might suggest that there’s a change in the DNA that has been inherited from mom or from dad or passed down from generation to generation in the family. If we suspect that there is a change in the DNA, which we call a variant, then we can offer genetic testing to individuals. Their insurance may cover it, but there are also options for people to undergo genetic testing and pay for it completely out of pocket.
WIB: At what stages of life do people seek out a genetic counselor?
Ewing: Genetic testing is a resource that is available all across the life span. You may have some couples that are interested in starting a family. You may have a couple where there may be a partner who is a carrier of a particular variant – let’s say, sickle cell anemia, as an example – and the couple is interested in knowing if the other partner is a carrier. You may have individuals who are young and have a personal history of cancer.
WIB: Several studies have found that African Americans pursue genetic counseling less than other groups. What keeps African Americans from seeking out a genetic counselor?
Ewing: In some instances, it really comes down to the fact that genetic counseling has not been offered to some patients or some family members. Unfortunately, sometimes health care professionals insert their bias into the health care practice and service that they offer to certain populations. Some health care providers may assume that individuals of African descent and other populations are not interested in seeking out genetic information. Another contributing factor is the mistreatment and abuse of individuals of African descent in scientific research and specifically genetics research at times.
WIB: How effective are over-the-counter genetic testing kits in tracing medical conditions?
Ewing: It is always recommended that a consumer follow up with their health care provider to undergo clinical confirmatory testing. We encourage people not to make health decisions based on over the counter tests. Testing companies do use accurate methodologies, but, occasionally, mistakes do happen.
WIB: You’ve experienced a lot in this profession. What are your hopes for the future?
Ewing: Over the past few years, I’ve seen a more focused effort and intention to ensure that we are engaging vulnerable populations in a sensitive and culturally competent manner. I see how we’re reaching groups that we never have before. And hopefully the outcome of that within the next few years is that genetic counseling becomes a household conversation and genetic counseling becomes a career option that young kids add to that list, along with doctor, teacher, firefighter. When it comes to genetic research, we still have a long way to go.
Ewing is on the board of the National Society of Genetic Counselors. Some leaders within the genetic counseling field are advocating for the passage of a bill that would provide medicare beneficiaries with access to genetic counselor services. Read more about the bill here.