Legal Challenges to Newborn Screening Research

The last few years have seen calls for more diverse and representative collections of biological samples for population based translational research. This need has sparked increased interest in using residual bloodspots from state newborn screening programs for research purposes, given that these collections contain DNA from all newborns born in a state each year. Nevertheless, because these specimens were collected as part of a mandatory public health program, their use raises a number of ethical, legal, and social challenges involving consent, privacy, and the identifiability of samples. Recently, a number of states have been involved in lawsuits over the storage and use of their leftover newborn screening bloodspots, including an ongoing lawsuit, Kanuszewski, et al. v. Michigan Department of Health and Human Services, et al., which has raised questions about consent and parental control over their newborns’ specimens. This webinar will focus on the current status of this lawsuit and its potential impact on future uses of public health data for research.  Additionally, it will explore questions including: How can health departments utilize valuable bloodspot collections and at the same time maintain the rights of newborns and families? And under what circumstances is it ethical to destroy DNA samples used for biomedical research?

View the discussion with panelists Eric Hendricks, JD and Aaron Goldenberg, PhD moderated by Natasha Bonhomme.