The Center’s research focuses on two cutting-edge uses of psychiatric, neurologic, and behavioral (PNB) genetic data: prenatal screening for copy-number variants (CNVs) that may have implications for neurodevelopmental abnormalities; and the introduction of behavioral genetic data in the courts and other adjudicatory settings. For each use, we are exploring how ambiguous PNB genetics data are interpreted, the impact of these data on our views of other people and the relationships we have with them, and the extent to which PNB genetics data affect our attributions of autonomy and responsibility for behavior.
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.
This major research project explores the impact of PNB genetic information at the individual level on families undergoing prenatal genetic screening, including understanding of and desire for genetic information, its role in modulating parent-child relationships, and its effects on perceptions of autonomy and attributions of responsibility.
This major research project investigates the impact of PNB genetic information at the societal level in adjudicatory contexts in which it may affect perceptions of autonomy and responsibility for behavior. Potential uses of PNB genetic data extend to venues in which decisions are made about responsibility and punishment, especially the courts. Since the decision-makers in these processes are often ordinary people (i.e. jurors), exploration of attitudes on the use of genetic information to assess responsibility for behavior can reveal both the probable effects of such data and the problems that may stem from their use.
Findings from our two major research projects will be used to develop recommendations for how PNB genetic information should be used in policies and practices at individual and societal levels. To develop these recommendations, we will consult with key stakeholders, including members of our local community. We will suggest how data on PNB genetics should be dealt with in family and clinical settings and in laws and public policies.