The last few years have seen a quantum leap in the progress of genetic testing technologies and their application to healthcare. Yet it has also begotten difficult questions elsewhere — most notably in the insurance sector. The inclusion of genetic testing in life insurance applications is currently the subject of fierce debate, walking a fine line between the needs and priorities of insurers, consumers, and larger social considerations concerning privacy rights and concerns about genetic discrimination.

Understanding Genetic Testing

This is the analysis of chromosomes, genes, and proteins from a blood specimen with genetic testing. These tests allow you to determine the genetic predisposition of a person to various diseases, as well as everything that concerns health risks and even their probable life expectancy. While these insights are very useful for preventative healthcare and personalized medicine, they also point to serious consequences in the realm of life insurance underwriting.

The Insurance Perspective

For an insurer, this genetic information would be a treasure trove of potentially powerful risk assessment tools. Life insurance is priced according to the mortality risk of the applicant. Normally this assessment is based on age, sex, past medical history, and lifestyle factors. By the same token, genetic testing could provide a more accurate forecast for some individual’s health care future and permit a better pricing of policies.

The insurers have warned that getting hold of genetic information might allow:

More accurate risk assessment

Better Power Prices For Policyholders

Better Financial Standing of the Insurance Companies

The Consumer Perspective

But the application of genetic testing to insurance applications creates real consumer protection problems:

Privacy: we all know that our genetic information is like a diary — it reveals very accurate details about us as individuals and, more importantly, it can also reveal things such as family ties.

Discrimination: No one wants a situation in which individuals with even benign genetic predispositions to some conditions could face unsurvivable premiums or be denied coverage entirely.

Deterrence from Testing- Having your genetic test results known could impact whether you are able to take out health insurance and this may stop people from having potentially life-saving tests done.

Fairness: Opponents say it isn’t fair to punish people for a genetic die roll that they can’t control, in contrast with lifestyle choices such as smoking or diet.

Regulatory Landscape

This has led to several countries regulating the take-up and possession of genetic information by insurers:

United States: The Genetic Information Nondiscrimination Act (GINA), signed into law in 2008, bars health insurers from using genetic information for underwriting. That said, it does not work with life insurance.

United Kingdom: A voluntary moratorium agreement between the government and the insurance industry, which puts some limits on when insurers can use genetic test results.

Canada: The Genetic Non-Discrimination Act of 2017 prevents health insurers from requesting applicants to undergo genetic testing and using the test results for rating.

Such diversity in approaches underlines the complexity of this challenging issue and the lack of global consensus around it.

Ethical Considerations

There are underlying ethical principles at the heart of this genetic testing in life insurance debate:

Autonomy: are individuals entitled to genetic privacy?

Impact on social justice: Is it equitable to price insurance based on genetic information, genesis is beyond choice?

Non-maleficence: Might genetic testing drive the ability to discriminate in insurance so far as we create a “genetic underclass” of uninsurable folk?

Non-Maleficence: Could implementation indirectly lead to a societal good, in the form of less sedentary lifestyles and more preventive care?

Future Outlook

The more prevalent and economical genetic testing becomes, the greater the temptation to offer this information as part of insurance underwriting. Yet this has to be weighed up against matters of ethics and potential societal consequences.

These potential scenarios could look like:

Regulatory Pressure: More territory-level genetic information insurance regulations may be enacted.

Specialty Insurance Products: The appearance of specialty insurance products for patients with genetic predisposition to certain conditions may be on the rise.

Tech fixes: If gene data could be protected and anonymized so that it never leaves its silo — meaning insurers wouldn’t access individual outcomes — perhaps you can still get aggregate info for an insurance risk team.

Public Insurance Options: In extreme cases, governments might simply need to take over the job of providing coverage for individuals who are unfortunate enough to end up uninsurable due to their genes.

Conclusion

The dynamic landscape of genetic testing and life insurance applications serves as a quintessential example of the tension between offering insurance companies tools to guide their risk assessment and protecting individuals from privacy-invading discriminatory technologies. However, with increased use of genetic testing by the public — including over-the-counter personal genome devices such as 23andMe — society will be forced to navigate these difficult waters and strike a balance between protecting privacy rights and maintaining insurability in an insurance market.

But the solution likely lies in a mix of regulatory frameworks, technological innovations, and rethinking traditional ideas about insurance risk and fairness – pride intervenes between the evident need for regulation. Continued conversations between insurers, consumers, policy-makers, and ethicists are essential as we forge this new path to develop policies that will be ethically sustainable while also fiscally viable.