Camping Around Health Insurance Discrimination

One of the most common concerns I hear about personal genome sequencing is the potential impact it could have on an individual’s health insurance. People are worried that if they get their genome sequenced and it indicates they are at increased risk for certain diseases, this knowledge may cause their health insurance premiums to rise or make them uninsurable.

While the opportunity for personal genome sequencing still lies in the future, there is a debate happening now about whether to institute protections for individuals from health insurers based on our current knowledge about genetic testing and the reasonable certainty that widespread adoption of these technologies in the years ahead is inevitable.

The idea that people might forego needed medical care for fear of discrimination by health insurers has motivated some to propose that we pass legislation that prohibits them from using genetic test results for certain purposes. After all, even though genetic testing may be relatively uncommon today, it is clear that as more and more people choose to peer into their genomes, this issue will soon touch us all.

So, if you are at all interested in the possibility of peering into your own genome, its essential that you understand the debates happening today around health insurance. At some point you will need to decide for yourself whether the benefits that might be gained from being sequenced outweigh any personal risks you may incur, including changes to your health insurance. Between now and then, there are opportunities to influence the debate, and ultimately, the choices that you’ll be able to make.

People who offer solutions to the genetics and health insurance issue, tend to fall into three camps:

  1. the patient advocates
  2. the free-market purists
  3. the ignotarians

I’ll take each in turn below the jump.

First, the patient advocates

This camp puts social justice and concern for the interests of individual patients above everything else. They believe that the personal and societal benefits of genetic technologies will be constrained — and patients will suffer as a consequence — unless there is legislative reform that prevents insurers from using genetic information against patients.

Their advice to you: change the rules, protect patients, support GINA, the Genetic Information Nondiscrimination Act.

Second, the free-market purists

This camp sees genetic testing as another tool in the actuary’s collection of risk calculators, and potentially a very good one at that. Take the ability to use this tool away from them and its no longer insurance, its social welfare.

Their advice to you: Get tested, don’t get tested, doesn’t matter, just don’t mess with the rules. Changing the rules will lead to adverse selection in the insurance market. Social welfare should be avoided at all costs.

Third, the ignotarians

This camp doesn’t necessarily feel strongly one way or the other about the potential benefits of genetic testing, but they do recognized the threat genetic testing poses for health insurance.

Their advice to you: Ignorance. Literally. Not in any derogatory sense, but in the sense that if you become knowledgeable about any predispositions you’re obligated to share this information with your health insurer and this is likely to affect coverage. So, if given a choice between knowing and not knowing, they would favor not knowing.

Although there have been examples of health insurers advocating ignotarianism, this position is most common in genetic research. Some genetic research studies disclose genetic test results to patients, other do not. People disagree about the merits of these different approaches, largely because of health insurance risks. Just this week, this debate appeared in an article:

The decision to feedback genetic information is a controversial one and some experts worry about the potential risks to participants. “I can tell you personally that I wouldn’t take part in such a study, because it would make it impossible to get insurance,” asserts Professor Collins referring to ClinSeq. “If a genetic test is done, and you’re fed back information, then you may be required to advise your insurer of that result,” claims Professor Collins. “Whereas if the genetic test is done but there is no feedback [as in UK Biobank], then there’s no requirement to advise insurers.

All of these camps have something to offer everyone.

Personally, I want to get sequenced. I also want to have access to the interpretation of those results (ignotarian strategy is out for me), especially if they include information about elevated risks for disease. And especially if these diseases have no effective therapies or management strategies available today. These are the diseases which need me the most, in terms of advocacy and the need for direct investment in the science which may be able to provide me with options down the road. I would much rather devote my money to science than to a health insurance company (free-market strategy is out for me). For this reason, I’m in the camp of the patient advocates. This week, I’m sending my senator the following letter:

Dear Senator ____,

I support the Genetic Information Nondiscrimination Act, or GINA, (S.358). I am writing to ask for your support for this legislation to come to the floor and pass.

It is astounding that this bill, which the Senate has passed unanimously in the 108th and 109th Congresses, has not passed in the 110th yet. The House passed it 420-3 on April 25, 2007. This bill protects all Americans from the misuse of genetic information in employment and health insurance decisions. With these protections in place, Americans will be able to use genetics in medicine without fear of misuse of their genetic information.

More than 140 national patient groups, academic institutions, research centers, companies, women’s organizations, labor organizations, and the millions of Americans endorse this legislation. We represent every sector of society in this nation, and we urge passage of GINA.

Thank you for your time.


The Federation of American Societies for Experimental Biology has an online form that makes sending a letter to your Senators totally painless. It takes about 30 seconds.


2 Responses to “Camping Around Health Insurance Discrimination”

  1. Trackbacks on March 23rd, 2019 10:24 am

    Looking for the PGP?

    Personal Genome Project

  • About this blog

    Even if you didn't know it before this moment, getting a personal copy of your genome sequence is a lifestyle choice that you may want to consider.

    So are you going to take the personal genomics plunge? How are you going to decide? What are the issues? How are other people making this decision? Who is doing interesting work relevant to these choices? By the way, what is relevant? These are some of the issues this blog is intended to address.

  • About me

    Read about Jason Bobe.


    TPG LABS Badge


    Enter your email address:

    Delivered by FeedBurner

    Subscribe via RSS Feed

    Theme Music

    That Spells DNA
    by Jonathan Coulton

    I Support the Public Library of Science