About the Lab

Amy McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She researches ethical and policy issues related to emerging technologies and innovative therapeutics, with a particular focus on genetics and genomics, neuropsychology, and the clinical integration of novel neurological devices and psychedelics. She receives research funding from the National Institutes of Health and the Ortus Foundation and is the founding director of the Ethical Legal Implication of PSychedelics in Society (ELIPSIS) program.
For a full list of publications, click here.
To see full CV click here.
Psychedelics
Current Projects
Neuroethics
Current Projects
Public Health Ethics
Current Projects
AstroEthics
Current Projects
AI Ethics
Current Projects
Genomic Ethics and Policy
Current Projects
Genomic Data Sharing/Data Governance
Completed Projects
- Neuroethics of aDBS Systems Targeting Neuropsychiatric and Movement Disorders
Adaptive deep brain stimulation (aDBS) systems can record neural activity and adjust stimulation in real time. These systems have emerged as a promising alternative to address significant limitations in conventional open-loop DBS treatment of neuropsychiatric and movement disorders. The BRAIN Initiative and others have made substantial investments in studies to accelerate the development of aDBS. However, neuromodulation using DBS that can alter mood or motor outputs, has raised num erous ethical, legal, and social (neuroethics) concerns (e.g., dehumanization, threats to autonomy/agency, changes in personal identity). aDBS systems may exacerbate these concerns and raise novel neuroethics issues (e.g., privacy, use, and ownership of neural data). Although theoretical bioethics work has explored ethical implications of conventional open-loop DBS for treating various disorders, there is little empirical neuroethics research in this area, and there is a severe lack of neuroethics research about aDBS. These issues need to be empirically examined and addressed to responsibly research and translate aDBS to clinical care. The long-term goal of this research program is to develop an ethically-justified and empirically-informed policy framework for the responsible research and translation of aDBS systems. The objective of this proposal, which was the first step in pursuit of that goal, was to identify the most pressing neuroethics issues related to aDBS research and translation from the perspective of diverse stakeholders across multiple clinical research contexts. Identifying and understanding aDBS neuroethics issues can help develop management plans to promote the responsible research and translation of aDBS, and maximize its social utility.
Supported by: R01MH114854; National Institute of Mental Health (BRAIN Initiative)
Role: mPI (with Gabe Lazaro-Munoz, Ph.D. and Wayne Goodman, MD) - Leading Responsible Change in Genomic Research
This project developed a conceptual model to identify data release options that could be incorporated into a model informed consent document. This conceptual model was informed by focus groups with research participants and led to the creation of three types of informed consent documents that were tested in a pilot focus group study (BCM Basic & Clinical Collaborative Research Project Award) and which were used later in a lager, randomized study (R01HG004333).
Supported by: Greenwall Foundation Faculty Scholars Program
Role: PI - A Preliminary Survey of Attitudes to Release of Genetic Information
This project explored patients’ attitudes, needs, and decision-making about participating in genomic sequencing research through focus group studies, with a particular focus on their desired level of control over public data release. The results of this project led to the development of model informed consent documents, which were empirically tested as a randomized intervention in a subsequent funded study (R01HG004333).
Supported by: BCM Basic & Clinical Collaborative Research Program, the Gillson Longenbaugh Foundation and the ARCO Foundation Young Teach-Investigator Award
Role: mPI (with Alica Goldman) - The Ethics of Consent for the Public Release of Potentially Identifiable DNA Data
Using the model informed consent documents developed and refined through two pilot studies (Greenwall Foundation Faculty Scholars Program and BCM Basic & Clinical Collaborative Research Project Award), we conducted a randomized study of the informed consent documents to assess the impact on an individual’s willingness to participate in the genomic study and how broadly one was willing to share their genomic information. Along with this intervention impact assessment, some participants were surveyed and interviewed to explore their attitudes and judgments about sharing genome sequence information in scientific databases, both publicly accessible and restricted.
Supported by: R01HG004333, National Human Genome Research Institute
Role: PI - Clinical Integration of Whole Genome Sequencing: A Policy Analysis (PoliSeq)
- Building the Medical Information Commons: Participant Engagement and Policy
Role: mPI (with Robert Cook-Deegan) - Sulston Project: Creating an effective knowledge commons for interpreting cancer genomic variants
Role: mPI (with Robert Cook-Deegan)
Clinical Genomics
Completed Projects
- Texas KidsCanSeq Study
Role: mPI (with Sharon Plon, MD, PhD; Donald William Parsons, MD, PhD) - BabySeq: Genome Sequence-Based Screening for Childhood Risk and Newborn Illness
Role: Co-Principal Investigator (Principal Investigators: Alan Beggs, PhD; Robert Green, MD) - MedSeq: Integration of Whole Genome Sequencing into Clinical Medicine.
Role: Co-Principal Investigator (Principal Investigator: Robert Green, MD) - PeopleSeq Consortium: Personal Genome Sequencing Outcomes (PeopleSeq) Consortium
Role: co-PI with Robert C. Green, MD, MPH, Michael Linderman, PhD; Kurt Christensen, PhD (co-PI) - Baylor-Johns Hopkins Center for Mendelian Genetics ADD:
Role: Co-Principal Investigator (Principal Investigator: David Valle, MD) - Human Genome Sequencing Center Project ADD Role:
Role: Co-Investigator (Principal Investigator: Richard Gibbs, PhD) - Returning Research Results of Pediatric Genomic Research to Participants
Role: Co-Investigator (Principal Investigator: Ellen Clayton, MD, JD)
Human Microbiome/Virome
Completed Projects