1 October 2021
This GA4GH Community Spotlight is the fifth in a monthly series featuring individuals from across GA4GH. This month we are featuring Maili Raven-Adams. Maili recently joined GA4GH in June 2021 as a Policy Analyst based at the Wellcome Sanger Institute in Cambridge, UK. Working primarily within the Regulatory and Ethics Work Stream (REWS) Maili’s role aims to support ongoing REWS work. As part of this she is tasked with research, analysis and the proposal of policies that GA4GH should pursue. She is excited to be involved in GA4GH as it will allow her to make a real difference to shaping policies that pave the way for the future of responsible genomic research and data sharing on an international level.
What is your favorite thing about the GA4GH Community and why?
Since joining the GA4GH secretariat everyone I have met has been extremely welcoming and provided me with an opportunity to contribute to and collaborate within discussions. I love that everyone in the team and the wider GA4GH community is excited by the work they are conducting and are dedicated to making a real-world difference with their involvement. It is great to be involved in such a driven group of like-minded individuals!
What scientific discovery throughout history is most fascinating to you?
I find scientific discoveries that were once confined to science fiction particularly interesting. For example, gene editing like CRISPR-Cas9 and the possibility of artificial wombs. It fascinates me how-these developments open up largely unprecedented legal and ethical debate that often divides opinion. In light of both the benefits and the fears surrounding these discoveries responsible regulation is required. Trying to find this balance, in order to benefit human-kind, has always appealed to me.
Why is diverse global representation critical to advancing progress in the field?
We need to hear contributions from people around the world and from different backgrounds that are relevant to GA4GH. By listening to diverse individuals from a range of environments we can best serve the community with GA4GH products, standards and policies. Please get involved if you want to – your input is fundamental to our work!
I also believe that it is particularly vital that data sets used in genetic and genomic research represent the population the research is aimed at benefiting. Unfortunately studies are too often based off Caucasian males as the norm. This results in groups of individuals being underrepresented in research and benefited less by outcomes. We need to ensure genomic data used in research is representative of all populations in order to ensure equal and equitable progress.