The Cross-Border Biotech Blog

Biotechnology, Health and Business in Canada, the United States and Worldwide

Tag Archives: veil of ignorance

In Praise of Universal Coverage From a Genomics Perspective

This could be the last chance in the U.S. to make good decisions about health care.  Why? Because now, before genome sequencing is fast and cheap and universal, we are in a political position rarely experienced outside philosophy books: we are still in the “original position,” behind the “veil of ignorance.”  I’ll try to make this quick, so forgive my mangling of Rawls.

Making “Just” Decisions

Rawls says that in order to make “just” decisions, you need decision-makers who do not know their “fortune in the distribution of natural assets and abilities, [their] intelligence, strength and the like.” 

That’s very close to the situation we have now — politicians don’t know much (beyond family history) about their own genomes or about their constituents’.  It has led to some good decisions, like the passage of the Genetic Information Nondiscrimination Act, but it’s temporary. 

Lifting the Veil with Genomics

Soon, genome sequencing will be fast and cheap and universal and there will be no more veil of ignorance.  Absent that, “[m]ore powerful parties rely on knowledge of their ‘threat advantage’ to extract favorable terms from those in less advantaged positions.”

For Example

A good example comes from the UK this week (via @jensmccabe).  According to The Times, new guidance from the General Medical Council (GMC) says that when a patient is found to have certain genetic diseases, doctors will be obliged to inform relatives about potential risks to their health.  As with any public health notification, there is a need to balance privacy concerns against public health concerns, but when you’ve struck that balance, should you have to re-visit the decision because of coverage gaps? 

Universal Coverage is the Cure

Universal coverage makes a just decision possible.  People with genetic diseases can be informed of their risk because they won’t lose their insurance or be forced into a high-risk high-cost pool as a result.  If there is no adverse coverage consequence — not availability and not cost — then there is very little “threat advantage” and people remain (functionally) genomic equals when deciding on healthcare policy.

My bottom line: If the U.S. moves into the genomic era without universal coverage, it will exacerbate existing inequalities and create new ones we haven’t even imagined.

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