6 research outputs found
The Michigan BioTrust for Health: Using Dried Bloodspots for Research to Benefit the Community While Respecting the Individual
Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/98798/1/j.1748-720X.2011.00577.x.pd
The Role of the Legal System in the Flint Water Crisis
Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/155954/1/milq12457_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/155954/2/milq12457.pd
Including ELSI research questions in newborn screening pilot studies
Background
The evidence review processes for adding new conditions to state newborn screening (NBS) panels rely on data from pilot studies aimed at assessing the potential benefits and harms of screening. However, the consideration of ethical, legal, and social implications (ELSI) of screening within this research has been limited. This paper outlines important ELSI issues related to newborn screening policy and practices as a resource to help researchers integrate ELSI into NBS pilot studies.
Approach
Members of the Bioethics and Legal Workgroup for the Newborn Screening Translational Research Network facilitated a series of professional and public discussions aimed at engaging NBS stakeholders to identify important existing and emerging ELSI challenges accompanying NBS.
Results
Integrating ELSI questions into pilot studies will help NBS programs to better understand the potential impact of screening for a new condition on newborns and families, and make crucial policy decisions aimed at maximized benefits and mitigating the potential negative medical or social implications of screening
Is Sharing De‐identified Data Legal? The State of Public Health Confidentiality Laws and Their Interplay with Statistical Disclosure Limitation Techniques
Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/111074/1/jlme12224.pd