2019 AER Conference

Panel III: What to Expect When We Sequence Expecting Moms

Moderator(s)

• 

  Jeremy Sugarman, MD, MPH, MA
  

  Harvey M. Meyerhoff Professor of Bioethics and Medicine, Johns Hopkins University
  

Panelist(s)

• 

  Josephine M. Johnston, LLB, MBHL
  

  Director of Research, Research Scholar, The Hastings Center
  
• 

  Haley K. Sullivan

  Health Policy Research Assistant, Duke University
  
• 

  Ingrid A. Holm, MD, MPH
  

  Associate in Pediatrics, Genetics, Boston Children's Hospital
  Associate Professor of Pediatrics, Harvard Medical School

Noninvasive prenatal testing can be used to perform prenatal whole genome sequencing (PWGS) by collecting fetal DNA from a simple maternal blood draw. Although prenatal genome sequencing isn’t yet part of routine clinical care during pregnancy, many believe it will be shortly, as the price of sequencing continues to plummet and commercial entities in the health and ancestry space push the public to obtain more personal genetic information. Public interest in PWGS may also be on the rise as concerns increase about conducting research on germline CRISPR therapies, and the recognized need for international engagement on that technology makes any policy consensus on germline CRISPR unlikely in the near future. This panel will explore the ethical issues surrounding clinical research into PWGS, both in terms of population justice and in terms of protecting the autonomy and beneficence interests of future persons. Recent research indicates that expecting parents and treating clinicians may have different priorities and concerns. This panel will also explore what types of genetic information should be returned to prospective parents who undergo clinical trials of PWGS and how directive healthcare providers should be when communicating the information.