Sequencing at Birth: Neglected Ethical and Equity Issues in Genomic Screening of Newborns
Thursday, October 12, 2023
8:15 AM – 9:30 AM ET
Location: Dover C (Third Floor)
Genomic sequencing is rapidly becoming a widely utilized tool for diagnosing newborns with unknown serious medical conditions. In addition, there are increasing calls to use genomic screening in healthy children to identify possible health concerns or disease risks. There are several efforts to address the commonly identified ethical and social concerns associated with newborn genomics including, appropriate levels of consent, privacy and potential genetic discrimination, and ethical approaches to returning results. While these issues are clearly important to address, less attention has been paid to the ethical implications of sequencing newborns in areas of equity, health systems, and the impact of uncertain results on parents. This presentation will explore these largely understudied issues with regard to their impact on health disparities. While there is widespread agreement that genomic technologies should be accessible to all families, there is less evidence that equitable access can be truly achieved within the context of our current healthcare system. Further, there is little attention to equity issues beyond access, including support for follow up services if a result requires further testing or interventions. Finally, there are insufficient efforts to address the utility of genomic results for families from communities who have been historically left out of genomic research. Within underrepresented communities, parents may be more likely to receive uncertain results and findings may be less informative. This presentation will propose policy and practice approaches for addressing these wider equity concerns and possible educational, engagement, and empowerment strategies for parents faced with making decisions regarding sequencing.