​Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics

This research project explores the impact of PNB genetic information on families undergoing prenatal genetic screening. In this project, we will follow women and, where applicable, their partners who have had a child following prenatal genetic testing. We will assess their level of understanding of the genetic information they learned from the testing. We will also gather information about why they desired this information and assess the role that it ended up having on their parent-child relationships, as well as on their perceptions of autonomy and their attributions of responsibility. The study will have a particular focus on cases in which genetic variants were identified that are considered either pathological or are of unknown significance.

This project investigates the impact of PNB genetic information at the societal level in adjudicatory contexts, such as courtrooms. Our goal is to understand how such information may affect perceptions of autonomy and responsibility for behavior. Prevention and punishment of crime are major societal concerns, and some genetics research has suggested that genetic factors partially help explain patterns of violent criminal behavior in some families. Already, the legal profession is aware of the data and has begun to explore its implications for the criminal justice system, although the appropriateness of such use is heavily debated. In our pilot work, we gathered empirical data on how members of the general public view genetic data and its application to determinations of guilt and sentencing decisions. Now, we are expanding our sample size and collecting new data on public attitudes towards the use of behavioral genetic evidence in the criminal law, as well as on public attitudes towards the use of behavioral genetic evidence in juvenile, informal adjudicatory, and everyday contexts.

Over the next four years, the Center will zero in on the impact of personal genomic information given to individuals already diagnosed with autism and their family members.  Using surveys and interviews, researchers will assess reactions to genomic test results, including the impact on views of normality, capacity, responsibility, treatability, and prognosis, along with systematic consideration of the consequences for decision-making and life-planning. To conduct this research the Center will partner with the SPARK study — an ongoing study, funded by the Simons Foundation, to sequence the genomes of 50,000 persons with autism and their parents.