Mandatory participation 2/2: genome sequencing

Mandatory participation 2/2: genome sequencing

Don't want to read? Video version below. OR search for podcast under 'Gregory Schmidt'.

This is a two part series reviewing how optional activities can unintentionally become mandatory, and result in unintended consequences from those who developed the technology.

Part 1: how social media has become mandatory
Part 2: how genome sequencing may become unavoidable

Part 2:
Genetic testing & full genome sequencing

In a similar manner to social media, many currently available genetic technologies are currently 'optional'. One is not required to have their whole genome sequenced.

There are currently only a number of short genomic sequences that can be searched for with any clinical utility. Current, medical guidelines emphasize the importance that those who do choose to participate in this process are aware of the gravity of the risks and benefits of finding out this information. For instance, discovery of neurodegenerative disorders, or high risk cancers.

However, as the price of genomic testing decreases and the usefulness of these tests increase, it is easy to envision a future where full genome sequencing becomes mandatory.

Genetic non-discrimination laws

Regional genetic protection laws are in place. In the USA, the Genetic Information Non-Discrimination Act (GINA) was passed in 2008. This legislation makes it illegal to discriminate against people based on their genetic code.

Of note: Canada only recently passed their Genetic Non-Discrimination Act in May 2017 - a decade after other countries did so.

‘Optional’: employee wellness programs

However, work-arounds to GINA have already emerged.  Bill H.R. 1313 in the USA the "Preserving Employee Wellness Programs Act" was introduced in 2017.

This bill allows companies to have different employee health insurance rates depending on if employees voluntary partake in an “employee wellness program” - which involves sequencing the employee and the employee’s family genome.

Those who don't participate in the optional 'employee wellness program' - could be subject to a 50% increase in their health insurance plan. The latest as of December 2017 on HR 1313 here followed at DNA Geek.

‘Optional’: standard workup

Another way compliance with genetic discrimination laws will be evaded is by turning genetic sequencing into a 'standard part' of pre-treatment workup. Initially it will start for procedures with limited resource, but it is easy to imagine how it will expand from there.

Initially, I anticipate those being considered for a transplant or exceedingly high cost surgery or therapy will have their genome fully sequenced as part of 'routine pre-treatment workup'. Therefore only those patients who are 'most likely to benefit' from the transplant (aka. live the longest) will be prioritized to the top of the list.

As the marginal benefit of full genome sequencing increases, we might expect it to be expanded to patients who are candidates for treatments. As part of the pre-operative investigation insurance companies (or your government payer) may use genetic sequencing to ensure only "suitable candidates" are prioritized to the top of the list for coverage. Although this appears to directly contradict GINA, I suspect arguments of ‘limited resources’ and ‘appropriateness of treatment’ will be used.

Certainly 'life longevity' or 'life quality' will be taken into consideration. Are we on a collision course with utilitarianism? This certainly poses problems in a single payer system, where it generally is cheaper for a patient to die unless their treatment will ensure they can live longer AND return their treatment cost in taxation on their income.

In all these situations, who is writing the algorithm? Who is studying its results? What values are being weighed by the algorithm's designers. Certainly computers will help in that screening. In a similar manner what decision, sorting, and discrimination functions for human genomic code will we hand over to computers, actuaries, and programmers?

Unintended Consequences

Full genome sequencing poses incredible benefits to the future of healthcare, but it is naive to believe it will be a painless transition.

Genomic non-discrimination laws are now in place, and Canada we have the Charter of Rights, but will such documents hold up against the forces of scarcity & shortage, and prospects of change & innovation.

Will genomic non-discrimination laws be circumvented - by stating on paper that genomic sequencing activities are ‘optional’, but those who do not fully participate in the programs self exclude themselves from potential treatments?

How do we ensure genome sequencing does not become unintentional genetic discrimination, en mass.

We must think anticipate, and mitigate, the unintended consequences of the technologies and systems we build before we mandate policies, procedures, and behaviours that its inventors never intended to.

Back to Part 1: Social media started as an 'optional activity' or luxury, but is participation in social media becoming mandatory?

Thank you: to Liam Black for editing

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Mandatory participation 1/2: social media

Mandatory participation 1/2: social media