23 and (not just) Me: Incorporating Family Members in Health Technology Assessment of Genetic Testing

December 2, 2020

Edmonton, Alberta

There is a disconnect between the theoretical foundations of economic evaluation that espouse welfarist and extra-welfarist principles and the practice guidelines that focus solely on benefits to patients. This disconnect is underscored by economic evaluations of genome sequencing technologies where measuring the costs and health consequences in family members are integral to understanding the value of the technology.

The learning objectives of this seminar are to:

  • Contrast economic theory with guideline recommendations
  • Examine how family members’ costs and health consequences are currently considered
  • Define genome sequencing and explain how family members are integrated in testing
  • Present examples in studies of autism and pediatric cardiomyopathy
  • Suggest how family members can be incorporated in health technology assessment

23 and (not just) Me: Incorporating Family Members in Health Technology Assessment of Genetic Testing


Wendy Ungar is a Senior Scientist, Child Health Evaluative Sciences, Hospital for Sick Children Research Institute, and Professor, Institute of Health Policy, Management and Evaluation, University of Toronto. She holds a BA cum laude from Brandeis University, a Masters degree in Pharmacology and Therapeutics from McGill University, and a PhD in Health Policy, Management and Evaluation from the University of Toronto Dr. Ungar holds a tier 1 Canada Research Chair in Economic Evaluation and Technology Assessment in Child Health. She founded TASK (Technology Assessment at Sick Kids) in 2007 where her team conducts research applying health economic methods to child health with a focus on genomics and neurodevelopmental disorders. Dr. Ungar and her team maintain the PEDE database, a user-friendly searchable online database of pediatric economic evaluations published since 1980 used by HTA agencies around the world. In 2017 Dr. Ungar was appointed Chair of the Ontario Genetic Testing Advisory Committee which makes funding recommendations on emerging genetic testing technologies for Ontario and in 2020 she was awarded the Dr. Jill M. Sanders Award of Excellence in Health Technology Assessment from the Canadian Agency for Drugs and Technologies in Health. Her book, Economic Evaluation in Child Health was published by Oxford University Press in 2010.