The ethics of whole-genome sequencing: from race and religion to science fiction

Talking Techniques

Welcome to part two of this two-part episode on whole-genome sequencing (WGS) in rare disease research and treatment. In part one we discussed the impacts the technology has had on both improving the clinical diagnosis and management of rare diseases and on drug development and basic research studies.

This episode goes beyond the technology’s capabilities and into the debates surrounding how, when and why they should be used. What needs to change for the technique to be applied equitably? And how does reality stack up against science fiction in terms of people’s perceptions of ubiquitous WGS?

To do this I speak with David Dimmock, Senior Medical Director of the Rady Children’s Institute for Genomic Medicine (CA, USA); Christine Stanley, Chief Director of Clinical Genomics, Variantyx (MA, USA); and Take Ogawa, Vice President of Sales & Marketing at Psomagen (MD, USA). Each of these speakers provides their opinions on the impacts of race, religion and way of life on the application of WGS and how much is too much data.

Contents:

• Introductions: 00:00-02:20
• Gauging public perceptions of routine WGS 02:20-05:40
• The role of industry in improving WGS accessibility and capabilities: 05:40-07:35
• The appropriate use of pre-symptomatic and predictive risk findings: 08:00-11:15
• Debating the discovery of untreatable diseases: 11:15-12:45
• The impact of data biases in gene sequencing and the lack of gene references for different populations: 12:45-14:45
• The impact of religion and lifestyle on ethical considerations in the use of WGS data: 14:45-16:00
• Dealing with unintended findings or results that impact relatives: 16:00-16:45
• The value of WGS in pharmacogenomic variant findings and challenging the ACMG59 list: 16:45-19:20
• Striking the balance between fully utilizing WGS for all potential findings and ensuring maximum participation for all groups: 19:20-22:45
• Filtering data to avoid exclusion: 22:45-24:10
• Who owns WGS data? 24:10-25:15
• Consent conversations: 25:15-26:30
• Final comments: 26:30-27:15

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