Amy McGuire, JD, PhD
Mary Majumder, JD, PhD
Stacey Pereira, PhD
Project Title: Research on the Ethical, Legal, and Social Implications of Genomics
The Center has several ongoing research projects studying the ethical, legal and social implications of genomic sequencing technologies and related policy issues.
One example is the Medical Information Commons project. Many national and international public and private initiatives are forming to collect and share data on a large scale for research and clinical use. Collectively, these efforts may lead to the creation of a medical information commons, a networked environment in which diverse sources of health, medical, and genomic data on large populations become widely shared resources. The success and value of such a commons will depend on development of policies and practices for effective governance that address barriers to data sharing and are developed with informed input from patients and members of the public whose data may populate it. The objective of this project, which has is funded by the National Human Genome Research Institute (NHGRI), is to engage expert stakeholders to inform policy decisions about effective governance for data sharing, while using deliberative methods to obtain informed public input to ensure that the values, rights and interests of individuals whose data may populate the information commons are represented.
Other examples include the BabySeq Project, a randomized, controlled trial exploring the integration of genomic sequencing into the clinical care of newborns. Outcomes are assessed via longitudinal surveys with parents and the newborns’ clinicians. The study focuses on the long-term implications for the health of these babies, as well as the potential impact of receiving this genetic information on the parents, the child, and the family. These projects are also funded by NHGRI, and many involve collaboration with other institutions, including Harvard Medical School and Brigham and Women’s Hospital.
The specific details of the student’s project will depend on their interests and the project’s timeline and data available when the student starts. The student will collaborate with one or more faculty mentors to contribute to conceptual and/or empirical research related to an ongoing project. The goal would be a paper or conference abstract/poster.
Institution and Location: Center for Medical Ethics and Health Policy, Baylor College of Medicine
Eligibility for international students?: yes
Expectations of student:
- The student must devote 10 hours per week to the project (consistent with a 3-credit course) and will develop a timeline of activities in collaboration with supervisor(s). The student will meet at least monthly with the faculty supervisor(s) to evaluate progress.
The only formal prerequisite for this project is familiarity with using Microsoft Office software (Word, Excel, PowerPoint, Access).
Preference will be given to students who have experience conducting thorough literature reviews, are organized and self-motivated, and write well.
Other preferred experience:
- Completed courses with a focus on understanding ethics from the perspective of a humanities discipline (philosophy, religious studies) or social sciences such as anthropology, psychology, sociology, research methods, or health law and policy.
- Searching electronic databases to retrieve peer-reviewed articles (e.g., PubMed, PsycInfo, Academic Search Complete) and writing literature reviews or article summaries.
- For some projects, experience with statistical analysis.
Knowledge and skills student can expect to gain: Student will gain experience in applying bioethics concepts and/or quantitative or qualitative analysis skills to a problem and skills related to manuscript and/or abstract/poster development.