Karen M. Meagher, Ph.D.

The purpose of this study is to elicit clinicians’ and scientists’ views, ethical concerns, clinical aspirations and governance needs regarding prenatal gene editing technologies. 

This is an interview study to understand the views of people with the lived experience of 10 different genetic conditions on gene modification therapies, and specifically on prenatal gene editing. Prenatal gene editing is not happening now, but it is possible that prenatal gene editing will be available in the next few years, at least in a research setting, and we want to know your thoughts about the direction this technology is going. We to hope speak with many different stakeholders (patients and their families, clinicians, scientists) with diverse perspectives to understand values and priorities for prenatal gene editing, including whether and how to make this technology available.

The purpose of this study is to explore lay understandings toward participating in and perceptions of consent to biospecimen research and valuation of genetics in SARS-COV-2 infection, testing, immunity, and vaccine development, to explore professional attitudes toward and perception of barriers and facilitators for implementating genetic technology to facilitate understanding of SARS-COV-2 infection and immunity, improvement and scale-up of testing, and vaccine development, and to identify ethical, social, and inter-professional aspects of microbial genetic technology implementation in population health surveillance, clinical test development, and vaccine research.We hypothesize that engagement with individuals whom directly experience and/or are impacted by the increasing use of SARS-Cov-2 genetic technology, including COVID-19 Pandemic Response Biobank contributors and interdisciplinary expert teams will help identify ethical and social issues in adopting and implementing emerging technology.

The  purpose of this study is to explore ethical, legal, and social implications (ELSI) of stakeholder attitudes toward new genomic technologies, including the contribution of these new advances to AM stewardship, to understand how stakeholder views and expectations of ethical issues and microbial technologies are shaped by a sense of professionalism and moral responsibility for clinical roles, population health outcomes, and health system policies, and to identify barriers and facilitators as microbial technologies are integrated into treatment decisions that also serve AM stewardship goals.