Reddit AMA: The importance of knowing your family health history
On November 21, 2017, experts from the National Human Genome Research Institute (NHGRI) turned to Reddit to answer questions from the Reddit community about their work on family health history as part of an "Ask Me Anything" (AMA).
Detecting Disease Risks
Common diseases such as heart disease and diabetes are highly complex, with multiple factors that play into your risk of disease development. These factors - like genetics, shared environments and social influences - tend to cluster within families, which means that knowing your family health history can aid in detecting unique disease risks and lead to better prevention and treatment.
On November 21, 2017, experts from the National Human Genome Research Institute (NHGRI) turned to Reddit to answer questions from the Reddit community about their work on family health history as part of an "Ask Me Anything" (AMA). Our AMA hosts were Laura Koehly, Ph.D., chief of the Social and Behavioral Research Branch and head of the Social Network Methods Section at NHGRI; Chris Marcum, Ph.D., staff scientist and methodologist; and Jielu Lin, Ph.D., post-doctoral fellow, both in the Social and Behavioral Research Branch at NHGRI. Here, we recap the event (or you can check out Reddit Science's page to view the full "AMA"!)
Overall, the team answered nearly 20 questions on topics that ranged from how people change their behaviors in response to learning their risk of getting a disease through their family health history, to the best ways to understand your disease risk when you don't know your family health history.
From cooptown03: Are there any options for someone who doesn't know their family history, due to estrangement or another reason? Can additional tests be requested from a doctor, or does something like 23andMe give you the best option?
From Koehly_Lab: This question taps into a big issue with family health history: what if you don't know it? There are many reasons that this may be the case. Some of these reasons include estrangement from family members, orphans, deaths in the family, adoptees, or simply because family culture precludes discussion of personal health. Options for individuals that do not know, but wish to learn, about their family health history (FHH) are limited. Direct-to-consumer, or DTC genomics companies such as 23andMe, genetic testing and ancestry services provide one route to possibly connect with unknown relatives and learn FHH from them. Another important aspect is preventative care, especially for those who do not know their FHH, by screening for disease at an earlier age and more frequently.
The Reddit community also wanted to know how to handle privacy in patient data in order to understand how to interpret family health history.
From adenovato: What privacy hurdles must you overcome to effectively model and resolve discrepancies in patient submitted family history?
From Koehly_Lab: This is a great question because privacy issues are an overarching hurdle when communicating about family health history for individuals, families, and healthcare providers! Scholars in the field of communication suggest individuals deem private information as something they 'own' and have the right to 'control'. Therefore, one of the biggest challenges to resolving discrepancies in patient submitted family health history is identifying at what level patients feel they own their family health history information and want to control its dissemination to other family members. If a patient feels they have personal control over their information resolving those discrepancies will be more difficult than if they take a family ownership perspective. Better understanding these perspectives might make conversations with patients about FHH easier and a little clearer.
Still, even when individuals openly share their family health information, there may be discrepancies that pose additional challenges in using that information to improve risk assessments and behavioral recommendations. In our research, for example, we've found that having more family members inform on the family health history may even improve individual risk assessments. Therefore, we suggest embracing as many family members' perspectives on your family's health history as possible! Communication between family members will also help individuals reconcile differences in family health history knowledge.
And finally, one Reddit user was curious to know how to engage underserved populations in family health history research.
From 823freckles: Awesome topic. Other than language/communication barriers, what kind of barriers are there to engaging Hispanic populations in genomic and health research? I know a lot of populations have an (understandably) deep mistrust of research. How can researchers foster trust and increase engagement in such communities?
From Koehly_Lab: In Project RAMA (Risk Assessment for Mexican Americans), we partnered with MD Anderson Cancer Center and their Mano a Mano cohort. One priority in this collaboration was to give back to the community. This research was grounded in a community-based approach in which we hired our research staff from the community, engaged an advisory board from key community stakeholders, and we gave our participants something back (i.e., their family health history, risk feedback and behavioral recommendations based on their risk, and community resources). We attribute our 93% retention rate over the course of the study to this community based perspective.
Our lessons learned really speak to the importance of engaging community members and community leaders in the design and implementation of genomics research involving often underserved communities. At NHGRI as a whole, we are deeply committed to this. In fact, just yesterday, our leadership published a paper in Nature Reviews Genetics on where we are missing the mark and what we are doing to help both in terms of funding and training minority scientists.
We also have a new initiative at NHGRI known as the Genomic Literacy, Education, and Engagement (GLEE) initiative to enhance the genomic literacy in targeted groups. And lastly, as part of our advisory council for NHGRI, we have a community engagement working group to tackle these very issues!
Last updated: April 4, 2019