Advocating for socially and ethically responsible research
I advocate for more socially responsible research, and for diversity, equity, and inclusion in genomics research and the workforce.
I believe that members of marginalized groups affected by genetics and genomics research must be adequately represented at all levels of research and decision-making. I believe that improving the recruitment, support, and retention of underrepresented minorities in the genetics and genomics workforce will benefit individuals, institutions, science, and society as a whole.
I'm particularly interested in the questions at the intersection of genetics, bioethics, and disability, and the societal and ethical implications of the implementation of genetic data and testing in research and clinical practice.
Supported by The Autism Intervention Research Network on Physical Health (AIR-P), I led and supervised an effort to develop a framework and guidelines for ethical genetic and genomic autism research. The Ethics in Genetics and Autism Research (EGAR) Workgroup is formed by autistic and non-autistic geneticists, bioethicists, genetic counselors, autism researchers, and advocates. Our paper Ethical challenges in autism genomics: Recommendations for researchers was published in the European Journal of Medical Genetics. I have previously served in the AIR-P Autistic Researcher Review Board (ARRB) and the AIR-P Database Committee to develop the Infrastructure for Collaborative Research.
I have served in numerous workgroups to facilitate discussion and debate around autism-related genomics research. I serve in the Spectrum 10K advisory board redesigning the study following a community consultation. I'm a member of the HEARD (Healthy Engagement in Autism Research Dialogue) leadership committee. HEARD is an initiative coordinated by The NeuroDevelopmental Variability Initiative of the Broad Institute, together with the Autism Science Foundation.
I led an effort to respond to a commentary by Singer et al. published in Autism Research in December 2022. This Letter to the Editor was authored and co-signed by a diverse group of autistic researchers, scholars, clinicians, and self-advocates with a wide range of clinical presentation and support needs, as well as non-autistic researchers, scholars, clinicians, and loved ones of autistic people.
I served in the Global Autistic Task Force On Autism Research, a committee comprising autistic advocates, researchers, and representatives of organizations by and for autistic people. On February 14, 2022, the Task Force released an open letter in response to the Lancet Commission on the future of care and clinical research in autism. We condemn The Lancet Commission's proposition to adopt the term "profound autism", as well as the emphasis on behavioral interventions. The Task Force has also published a paper on Autistic perspectives on the future of clinical autism research.
I volunteer with Autistics Unmasked (AU), an autistic-led and run non-profit organization dedicated to providing a safe space for autistic self-advocacy. With the AU Research Team, I have created a guide for adults who are hoping to answer the question, "Am I autistic?". This free guide can help readers in their self-evaluation and navigating the clinical assessment process and can serve as a source of information for anyone seeking to better understand autism and autistic people. In less than three weeks since it's publication, the guide was downloaded more than 20,000 times! Download your free copy from the AU DPD store.
I have previously served in The Translational Genomics Research Institute's (TGen) Diversity, Equity, and Inclusion council.