Building a responsible future for personalised medicine
Erica Ramos, Staff Genetic Counsellor for Illumina, gave us an insight into her daily life and routine for the latest issue of FLG magazine, and showed us what it means to be a genetic counsellor at one of the most important technology companies of the moment.
When I finished my genetic counselling graduate program in 2001, I never would have predicted that 15 years later I would find myself working on the leading edge of clinical genomics. To be fair, this wasn’t just a complete lack of vision. There really wasn’t a leading edge because the Human Genome Project hadn’t yet been completed. Sequencing one genome was a 100 million dollar effort. And if you had asked most genetics professionals whether genome sequencing would be available to the “average” individual in their lifetimes, I’m pretty sure that you would have been laughed out of many rooms.
In 2002, 86% of respondents to the National Society of Genetic Counselors (NSGC) Professional Status Survey saw patients. As of this year, that number is now 69%. I attribute this change to the many genetic counselors who have demonstrated that our deep scientific and medical knowledge and our communication and counseling skills are valuable across industry, research, education, management and entrepreneurship. For the past four years, I’ve worked for a company that is leading in many key areas of the genomics revolution from the sequencing technology to the applications of genomics in medicine. I was the second genetic counselor to join Illumina and we now have fifteen genetic counselors working in five different areas of the company. Specifically, I work in Illumina’s Applied Genomics business unit and lead clinical development for our Healthy Genomes Initiatives, which increase education and awareness about genomics in a predominantly healthy population. At the core of everything I do here is to ensure that our efforts are moving forward in a responsible and thoughtful way, particularly as they touch people around the world. Every day is different, but this is one day in my life as a genetic counselor in industry.
Yes, it’s true. I am one of those annoying morning people. It’s partially because I like to try to get my workout in before my brain wakes up and figures out what I’m doing to my body. But after that, it’s about getting my brain warmed up before I get to work. One way that I ease into the day is by reading through my Twitter feed. The first time that I heard Eric Topol speak in 2012, he was extolling the virtues of Twitter. And he was absolutely right. If you’re working in genomics and personalized medicine, you have to be on Twitter. It is the broadest window into what people in the genomics community are thinking and talking about. In these days of social media and pre-prints, many new discoveries and insights are promoted on Twitter before research is ever published in a journal. It’s an important way to stay abreast of the latest developments both in science and society as genomics and its public perception change so quickly.
Part of the genetic counsellor lifestyle in Southern California is the commute. Right now, my commute consists of two things – listening to Bulletproof Radio and mentally preparing my presentations for the upcoming conference season. This year is particularly busy as topics related to genetic counselors are expanding into many more conferences, including the San Diego Festival of Genomics and Global Genes RARE Patient Advocacy Summit. Equally exciting is that the topics range from how genetic counselors can use social media to how we can support families with rare disease to efforts in community genomics. It can be a little overwhelming to talk about such varied topics to such varied groups, but it’s an opportunity to get creative! That’s where the Bulletproof Radio comes in. It’s a huge help to listen to really bright people from all walks of life talk about their passions, how they want to make the world a better place and what they do to do their best.
I’ve arrived at Illumina headquarters and have a planning meeting with our Healthy Genomes Initiatives group about an upcoming Understand Your Genome (UYG) program. Understand Your Genome is a opportunity for participants to learn about clinical whole genome sequencing by enabling them to investigate the most interesting genome out there – their own. These educational symposia, often conducted with host partners, are designed to engage individuals in learning about the untapped potential of DNA to improve health care and management. Today, we are working with our host partner to develop the agenda and select speakers to make sure that the program is meaningful and informative for the participants. These meetings can include our program managers, laboratory genetic counselors and marketing and sales, bringing together all different perspectives. And each program is different – upcoming UYGs include programs hosted by the Mayo Clinic, Harvard and the Illumina Accelerator program. If you’re interested to see how the agenda and speaker selection turns out, follow #UYG on Twitter.
Follow the rest of Erica’s day on page 36!