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Newborn Screening: Public Views on Participation

April 23, 2014

Dr. Yvonne Bombard, genomics and health services researcher in the Li Ka Shing Knowledge Institute of St. Michael’s Hospital and an assistant professor at the University of Toronto, publishes in the February 2014 issue of the journal, European Journal of Human Genetics, an article that explores the public opinion in Canada on participating in Newborn Screening (NBS).

Dr. Bombard and other researchers used an online public survey of Canadian residents recruited through an Internet panel, to see what the public opinion would be on the use of Whole-Genome or Exome Sequencing (WG/ES) in NBS. What is public opinion on adding WG/ES to NBS ? What would parents think if their newborn’s complete DNA sequence of their genome is integrated into NBS ? Are there concerns “regarding the generation of incidental information on millions of infants annually” ? Would fewer parents consent to NBS because of the addition of WG/ES to NBS ?

Here are the results of the survey:

•   94% are willing to participate in NBS using existing technologies to screen for specific genetic conditions

•   80% are willing to participate in NBS that sequences their newborns’ genomes for any and all forms of disease

•   48% thought it is the responsibility of the parent to participate in NBS programs using existing technologies

•   30% thought it is the responsibility of the parent to participate in NBS programs for whole genome sequencing.

The authors of the journal article concluded that :

“ ….. integrating WG/ES into NBS might reduce participation, and challenge the moral authority that NBS programs rely upon to ensure population benefits. These findings point to the need for caution in the untargeted use of WG/ES in public health contexts.”

References

Bombard Y., Miller F.A., et al. Public views on participating in newborn screening using genome sequencingEuropean Journal of Human Genetics. 2014 Feb 19. doi:10.1038/ejhg.2014.22.

Please Note: “Tiny foot” By Pawel Loj , Let Grow Therapy and Counseling – Helping Children To Thrive (Atlanta, GA, USA) [CC-BY-2.0]  | via Wikimedia Commons.

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