Genome Kids!

Parents and providers' preferences toward genomic sequencing involving healthy children

Dr. Yvonne Bombard, St. Michael's Hospital

Background

Genome sequencing (GS) is a genetic test that looks at every letter of a person’s DNA code. Genome sequencing can provide disease-risk information for a wide range of childhood and adult diseases, some of which can be prevented and others which cannot. Increasingly, parents of healthy children are being asked to take part in research studies that include genome sequencing, which can help us understand how our DNA make up can affect health and development over time. There is controversy over whether or not to provide genome sequencing results to healthy children because doing so poses ethical, health service delivery and health policy challenges. At present, very little work has been done to evaluate parents’ and providers’ views and preferences surrounding whether and how to provide genome sequencing results in this context.

Study Aim and Objective

This study aims to explore parents’ preferences and concerns related to learning genome sequencing results for their healthy child, as well as providers’ views on the value and risks of receiving genome sequencing results for healthy children in their care. The main research question is: What are parents and healthcare providers’ views and expectations towards the recruitment, consent, and provision of genomic sequencing results in healthy children? We will conduct interviews and collect responses from questionnaires to explore parents and providers’ preferences towards genome sequencing involving healthy children.

Importance of the Trial

This research will inform policy and practice on whether and how to conduct genome sequencing involving healthy children.