Lindsay Smith is a Project Manager at the Global Alliance for Genomics and Health (GA4GH), an international not for profit alliance that develops standards, policies and frameworks for the responsible and secure sharing of genetics and related health data. She earned her Master’s in Molecular Genetics from the University of Toronto, then worked at SickKids (the Hospital for Sick Children) before joining GA4GH.
She entered the standards world by joining the ISO subcommittee on Genomics Informatics, ISO/TC 215/SC 1, in 2019. In 2020, she became the Project Lead for developing the standard for phenopackets (ISO/CD 4454 Genomics Informatics – Phenopackets: A Format for Phenotypic Data Exchange).
What inspired you to get involved with SCC and ISO?
Part of my job is to coordinate a genomics and health forum that facilitates knowledge exchange between global genomics initiatives. I also support a lot of collaboration between standards development organizations and ISO.
The Phenopackets standard was developed and approved through GA4GH in October 2019. It enables the exchange of phenotypic information among systems and computation of data. The standard has the incredible potential to impact clinical research by enabling integration of different sources, and improving clinical diagnostics and storage of clinical data. If researchers’ efforts are fragmented or competing, we’re not going to solve anything. GA4GH decided to bring phenopackets into ISO with the help of SCC so we can bring together global experts and collaborate on making the standard valuable and a benefit to all.
I joined SCC in February 2020 and applied for the SCC Innovation Initiative which phenopackets was accepted to. Shout out to Don Newsham, long-time contributor to standards work and Administrator for ISO/TC 215/SC 1, and SCC Program Manager Andrea Ciemny who were absolutely fantastic in guiding me through ISO processes and procedures.
Young professionals will shape the future of international standardization. What would you say to emerging experts who feel like only seasoned specialists can get involved in standardization activities?
Get involved and don’t be afraid to get involved! I think a lot of people come in thinking, ‘I’m no expert, these people have been here for years, what could I possibly contribute?’ The truth is you do have great ideas and you come from different perspectives. Join a technical committee or two and try submitting comments, even if they’re just editorial. For a lot of people writing standards, English is their second language so by even just making a standard a little easier to read, your contribution is valuable. In the worst-case scenario, you will still learn something new about your field. It’s not as scary as it seems.
SCC is one of more than 50 international standardization bodies that signed the United Nations Economic Commission for Europe’s Declaration for Gender Responsive-Standards in 2019. How does ISO/TC 215/SC 1 support this global effort to create more gender-responsive standards?
One of the great things about TC 215 is that there are several women in the group. All of who come from different backgrounds and bring different expertise. They are very actively involved and are being heard. I think that’s fantastic! In standards development, even in technical development, we’ve been hearing and learning more about unconscious biases when you’re creating standards, even unintentionally. To make standards for everyone, we need to have everyone involved. I would love to see more women in the STEM field, which is unfortunately quite male dominated, but I think we’re making the steps there.
What role do you think the SCC will have in the standards world 50 years from now?
As long as people keep innovating and building new technologies, standards will be needed. What we create now will affect the future. As the trend of digitization intensifies, we’re going to see massive amounts of genomic and health data generation that have an enormous potential to impact research and healthcare delivery. There are many challenges: inconsistent pipelines, volume of data, etc. My vision for the future of standardization is a world where clinical geneticists have an internet of genomics, one where they can access exponentially more data than what is available today. This vision depends on standards. I really hope that future comes true.
Participation in international technical committees, such as ISO/TC 215/SC 1, allows experts to shape standards that impact them. Find more opportunities to get involved in standardization activities.