Dr. Jennifer Sarrett is currently a Lecturer at Emory University’s Center for the Study of Human Health, where she teaches courses in Health Humanities, Bioethics and Disability, and Mental Illness and Culture. Her work focuses on intellectual and developmental disabilities (I/DD) as they relate to culture, disability rights, and ethics. She began working in the field of autism and developmental 15 years ago as a special education instructor and consultant in the U.S. and abroad. With the objective of studying the role of culture in the identification, understanding, and treatment of autistic children, she obtained her PhD from Emory’s Graduate Institute of Liberal Arts (ILA), a unique interdisciplinary program. Her dissertation compared parental and professional experiences of autism in Atlanta, GA and Kerala, India. Along the way she became interested in neuroethical issues related to I/DD, including international research ethics, human rights and I/DD, and the implications of emerging technologies for early identification and diagnosis. Her work is strongly influenced by the concept of neurodiversity, a scholarly and advocacy position that works to encourage acceptance of neurological differences, including autism, rather than seeking cures and strategies to normalize autistic behavior. Dr. Sarrett has published a range of articles, including the development of a more inclusive model of human rights centered on a consideration of autistic difference; the ways images of autism depict and promote damaging tropes about autism; cultural influences on the ways parents explain their child’s autism (Spring, 2015); and ethical issues related to international research on I/DD.
Most recently, Dr. Sarrett has begun to look at the neuroethical issues related to eye tracking technologies that have the potential to identify the possibility of autism in infancy and the implications of employing widespread chromosomal microarrays (CMAs) in adults with I/DD. While both of these emerging technologies have numerous potential benefits for patients and their families—including the ability to allow families to prepare to raise an independent autistic child and the possibility of identifying molecular information important for medical treatment and health—there are numerous concerns to clinical and researchers must consider prior to widespread implementation. Concerns she considers include: Given a dearth of infant interventions, how should clinicians advise new parents who are told their infant will likely develop autism? What happens if a child is falsely identified by an eye-tracking device as likely to develop autism? And, if eye tracking is implemented globally, how will areas with already scant resources for disabled children deal with an influx of autism diagnoses? If a CMA identifies a genetic anomaly associated with I/DD in an adult, how does this influence the patient’s identity formation? How to best explain to adults with I/DD (and without!) the issues of penetrance (i.e., how likely it is a genotype will be expressed as a phenotype) and expressivity (i.e., how ‘strongly’ a gene is expressed) given the wide variability of I/DD expression?
Alongside this work, Dr. Sarrett is dedicated to improve the ways parents receive a diagnosis of autism or intellectual disability. Often, parents received a diagnosis along with suggestions of the difficulty of raising a disabled child and without any discussion on the ways life with a disabled child can be rewarding, or just normal. As such, Dr. Sarrett is working with colleagues to develop a parent mentor program that pairs caregivers of children with specific disabilities with parents who are just receiving that diagnosis. The purpose is to show newly diagnosed families what living with a disabled child is like in order to dispel notions of tragedy, difficulty, and a lost future. This program is in the very early planning stages, but Dr. Sarrett hopes to have a pilot program implement in the coming year.