Differences in what research subjects want and expect and what researchers are prepared to provide, as well as in what patients and the public want and what clinical genetic testing is able to provide, were frequently highlighted in Congress presentations. A broad spectrum of scientists, clinicians, patients, families, policymakers, and the public at large are participating in ELSI research and helping to shape how genetic information is explained and applied. Newborn screening represents one such area, as does personalized genomics in general (in direct-to-consumer genetic testing and other forms). Critiques of the usefulness and cost of data acquisition and the uncertainty of analysis reflect the input of the public square, as do debates about what is considered useful and by whom. For instance, one panel session involved Congress attendees in a dramatic reading addressing different perspectives on enrollment in gene-finding research within a family affected by a genetic disorder [E-3].
