Disparities in Genetic Testing

Author: Lucia Vidal

As our BioGENE study begins to unfold, we believe it is important for our lab to deepen our understanding of genetic testing. This week in our lab, we watched a video on the disparities in genetic testing and discussed some of those issues. The topics included socioeconomic status, prevalent mistrust, and logistical barriers. Much of what we know about genetics comes from research on predominantly white, Western populations. This skews the data and leads to less accurate diagnoses for people from other ethnic backgrounds. 
We began by discussing how society can work to improve some of these disparities. The first method we discussed was one that the video had mentioned. Often, physicians will hold back from suggesting genetic testing because they assume that the patient will not be able to afford it. The reality is that automatically excluding low-income participants based on assumptions about affordability not only limits research but can also perpetuate distrust. Genetic testing is expensive, however, and is often not covered by insurance. So, one of the biggest barriers many families face when choosing to do genetic testing is the cost. We discussed how working as a community to advocate for more coverage of genetic testing in public and private insurance, especially for low-income families, can make science more accessible.  
The next topic we covered was the prevalent mistrust within marginalized communities. We discussed how there are many historical reasons for this mistrust – ie. unethical medical experiments or data breaches. This mistrust has detrimentally impacted individuals of marginalized backgrounds who have gotten genetic testing done. To break this cycle, we suggested that physicians and researchers should focus on educating the public about genetic testing, specifically reaching these previously ignored communities. Another concern we saw was that often physicians do not have the time in their schedules to thoroughly explain the process to a patient perpetuating greater mistrust in the medical profession. Additionally, medical school curriculums do not dive deep enough into genetic testing. We believe a good starting point would be for medical schools to include education on these issues in their curriculum. Next, building trust can’t be achieved in a rushed appointment, and there needs to be critical discussion within healthcare settings to create time and space for these conversations. 
The last topic our lab covered this week was how we can work as a lab to educate the public about genetic testing and work to make our participant demographic range as diverse as possible. One solution we explored was creating a "Genetics Day" where we can table at local events and post different things on our social media accounts. A “Genetics Day” can help make these discussions more approachable and less clinical. We also discussed how once a diagnosis is given, participants are often bounced between different specialists and forced to retell their medical stories repeatedly. This creates a fragmented healthcare experience that can be both exhausting and disempowering. A more holistic approach, where multiple specialists collaborate and work together, could ease this burden. Finally, making genetics a conversation about more than just potential diagnoses can help expand the pool of participants. If we only talk about genetics in terms of rare disorders, we’re missing an opportunity to educate people on the wide-reaching impacts of genetics on overall health, lifestyle, and future planning.