ELSI Friday Forum | Legal Challenges to Newborn Screening Research

Join us on Friday, July 8, 2022, for the next ELSI Friday Forum: 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 ELSI 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?

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

To continue the conversation please join fellow audience members for an informal discussion in a Zoom meeting immediately following the forum. The link will be placed in the Zoom Chat during the forum. For those who cannot attend the live event, the forum will be recorded and archived on the ELSIhub Video page. Closed captioning and/or transcripts will be provided for live and recorded events. By registering for an ELSIhub event, attendees agree to abide by the ELSIhub Code of Conduct: https://elsihub.org/news/code-conduct