Is GINA a good thing?

That’s a question posed by Daniel at Genetic Future. He mentions an editorial from Nature, whose answer is, without equivocating, “yes.” A letter from a Spanish scientist entitled “How genetic censorship would harm everyone” responds to the editorial :

Better information allows better matching of people and jobs, and of people and insurance policies. The purpose of firms is to produce goods and services efficiently, and information helps to improve efficiency. The purpose of insurance is to manage risk, and information availability lowers risk.

Daniel quotes this to open for discussion. So, I’ll start some discussion. There are several problems with this line of reasoning.

I’m going to stick with the health insurance angle for now.

1. I am not sure how this is ‘censorship’ any more than not allowing people to access other medical records, or my credit history, or the contents of my cupboards without my permission or just legal cause is ‘censorship.’ This is a privacy right, not censorship.

2. Perhaps this comment is coming from a European point of view, but in nations without universal healthcare or insurance, such as the U.S. , open access to private genomic information would be devastating. Individuals in this country already are denied health insurance for some pretty minor ‘pre-existing’ conditions, or the cost of said insurance becomes out-of-reach. In a world of open access (to private genomic data) for insurance companies, insurance costs for most people, for the very things they need it for, would be impossibly high. In nations with universal health care or single-payer insurance, this is not as much a problem. You can see examples of this problem in the U.S. from the “Coalition for Genetic Fairness” in their publication “Faces of Genetic Discrimination.” (warning: pdf file, from this link on reasons GINA is needed)

3. “information availability lowers risk” only for the insurance companies, not for individuals. Insurance is actually based on spreading risk, as much as lowering it. In fact, insurance is based on ignorance. We don’t know if an earthquake will destroy our house, neither do our many neighbors. We could all save up in a savings account the cost of our house just in case our house is destroyed, or we could all put a much smaller amount into an insurance plan and spread the risk. Insurance is based on that ignorance of who will be hit. Of course there are some risks we take by building our house in San Francisco, so insurance is higher.. still, the risk is spread across households because of the uncertainty, the ignorance, of if, when and who an earthquake will hit.

4. It’s a catch 22 in a way. If genomic information is not private, individuals will refuse to be tested for fear of discrimination. If the promise of genomics (better diagnosis, prevention and treatment) is realized, than it would not be put into practice because people refuse to get tested (see link above). Thus health care costs will rise and remain high.

Though I understand the writer’s point of view to an extent, in the current U.S. system open access would lead to impossible costs and even more uninsured individuals with poor health care and/or the failure of the promise of genomics (and better prevention and diagnosis that would bring) as people refuse to get tested for fear of discrimination and said impossible costs. The U.S. is in an impossible situation as it stands, GINA is required to rectify that situation. And for this reason, OpenHelix is a member of the Coalition of Genetic Fairness.

11 thoughts on “Is GINA a good thing?

  1. Mary

    You can read the whole letter from his website:
    http://www.udc.es/dep/bave/marcelino/pubs.htm

    I don’t understand about the “Better information allows better matching of people and jobs”. Does this suggest that employers should be allowed to peg us to jobs because our genes indicate we’d be good at that? What if we didn’t like that job? What if you did like that job but didn’t have the right gene? Wouldn’t that be discriminatory too?

    I do not understand this perspective at all.

  2. Marcelino Fuentes

    Hi! :)

    1. The bill is censorship, not a privacy right. A privacy right would allow you to withhold, disclose or use your genetic information as you see fit. The law forbids you from using your genetic information to reach agreements with employers and insurers.

    2. In a world of voluntary disclosure of private genetic information, insurance costs would decrease for most people, and increase, in some cases prohibitedly, for a minority. Average insurance costs would decrease.

    3. Yes, if we knew in advance where an earthquake would strike, insurance would be pointless. But this is an argument for information. If we had the relevant information about future earthquakes we would build our houses in safe places. Earthquakes would not destroy our houses and we would not pay for earthquake insurance. That’s a win – for all of us, not for insurance companies.

    4. As long as employers and insurers value and reward genetic information, individuals have the incentive to getting tested.

  3. Mary

    1. Have you read the text of this legislation? I don’t think are interpreting it correctly. Please indicate which part you think is prohibits you from using your information. It is designed to prohibit misuse of the information.

    2. With all the linkage to disease information coming from GWAS studies more and more quickly, insurers will use any excuse–tentative or low quality even–to throw us out. We have no government insurance to fall back on. Can you please indicate what percent of people will not have genes linked to some medical condition?

    3. Let’s take the colon cancer gene. In people who carry this, the chances of colon cancer are high. From birth. What do you expect them to do? Change their DNA? As of now, they often avoid being tested out of fear of discrimination. This does not prevent colon cancer. It ensures that many people won’t get the proper preventative care and screening. Patients lose. If insurers knew you had the colon cancer gene they can kick you out. Insurers win.

    4. Employers and insurers only value genetic information so they can purge the expensive individuals. Individuals lose. Families lose. There is today no value in individuals getting tested because it actually puts them at risk of losing jobs and losing coverage. That’s what this law prohibits.

  4. Marcelino Fuentes

    1. The law prohibits you from using your genetic information to negotiate a higher salary or a lower insurance premium, for example.

    2. In your scenario insurance companies would run out of customers. But in reality there will be insurance as long as there remains uncertainty about one’s future medical conditions. Genetic information will not completely remove uncertainty.

    3. The function of insurance is to manage risk, not to cure cancer or to cut medical costs. If you want to socialize medical costs you may want to push for an institution specifically designed to do it fairly and efficiently.

    4. See point 1. Using genetic information in the labor market would result in less unemployment. It would be less riskier for employers to hire workers, so it would be profitable to hire more of them. And the use of genetic information would help complementary employers and workers to find one another and strike mutually beneficial deals more easily.

  5. Mary

    Marcelino, please show me the text of the law that describes what you claim in point 1. It had nothing to do with what you describe.

    Opposition to GINA means:

    1. You think it is OK for workers to be fired from their jobs based on any genetic test–work-related or not. Is that ok with you?

    2. You think it is OK for anyone (including children–who are generally not employed) to be expelled from all insurance because of a genetic test–any genetic test–whether they manifest a condition or not. Is that ok with you?

    This is where we are, and this is what GINA is written to prohibit.

  6. Marcelino Fuentes

    “H.R.493
    Genetic Information Nondiscrimination Act of 2007 (Placed on Calendar in Senate)

    SEC. 202. EMPLOYER PRACTICES.

    (a) Discrimination Based on Genetic Information- It shall be an unlawful employment practice for an employer–

    (1) to fail or refuse to hire, or to discharge, any employee, or otherwise to discriminate against any employee with respect to the compensation, terms, conditions, or privileges of employment of the employee, because of genetic information with respect to the employee; or

    (2) to limit, segregate, or classify the employees of the employer in any way that would deprive or tend to deprive any employee of employment opportunities or otherwise adversely affect the status of the employee as an employee, because of genetic information with respect to the employee.”

    This means that you cannot negotiate a higher salary based on your genetic information. The law forbids your salary to be higher than that of another employee based on genetic information, because that would be “discrimination” (against the other employee). The same goes for insurance.

    1. You think it is OK for workers to be fired from their jobs based on any genetic test–work-related or not. Is that ok with you?

    Yes. (Using information unrelated to work to fire someone is, however, very rare.)

    2. You think it is OK for anyone (including children–who are generally not employed) to be expelled from all insurance because of a genetic test–any genetic test–whether they manifest a condition or not. Is that ok with you?

    I think it is ok to refuse to offer insurance to anyone. If your example involves some kind of breach of contract, then I am not so ok. The laws dealing with breach of contract in insurance and in labor relations are not and must not be the same.

  7. Theodore Horoschak

    We’ve been confusing two issues in the US for many years. One is access to health care when needed and the other is management of risk.

    Insurance is a means of managing risk, of turning ignorance about the hazards of the future into a way to transfer the monetary costs of those hazards, should they materialize, to a larger pool of individuals. It is only one of the available means to manage risk at our disposal. Others include, for example, prevention and mitigation. The greater the amount of information, the more efficient the mechanism. This means that things which are certain, or virtually certain, are not insurable.

    There’s where the fallacy of using insurance as a means (at least as a sole means) of providing access to health care comes out. My concern as an individual is not about eliminating the risks of my ignorance, but in finding a way to get good treatment for my health problems when the costs exceed my ability to meet them. Reliance on insurance puts me into a position of desiring ignorance of my health so that I can receive treatment in the future should I need it.

    Something other than health insurance is needed to address these kinds of needs. It is the wrong tool for the job.

    Incidentally, should genomic analysis become a powerful tool for predicting disease, health insurance will become little more that a means to address accidental injury and opportunistic conditions. Insurance companies will simply not offer coverage for conditions with high probabilities of occurrence and people will value health insurance less because of that. What I’m trying to say is that better information about future disease conditions will make health insurance a marginal industry, the better our predictive power becomes, the more margin they become (because they increasingly provide less and less value).

    We need to stop focusing on insurance as the principal mechanism and find another one (universal care?).

  8. Mary

    Ok, we’ll have to disagree.

    I don’t believe one’s superior genetic make up should enable you to make more money. That sounds like eugenics. (I still don’t believe that’s how that law is written, but for the sake of this discussion I’ll address that as an issue.)

    I don’t believe that firing for genetic cause is or will be rare–we have evidence of this today, and every day more genes are linked to disease.

    I don’t believe that you should be left completely adrift because of your genes, or an insurance company’s misinterpretation of genetic data.

    That’s just not the society I’m interested in living in. And that’s why I support GINA.

  9. Mary

    @Theodore: I don’t think we are confusing them, we are dealing with the reality as it is today. We can want other solutions (like universal health care) but that is still far away. We can’t wait for that to deal with genetic discrimination. It is here now.

  10. Trey


    Incidentally, should genomic analysis become a powerful tool for predicting disease, health insurance will become little more that a means to address accidental injury and opportunistic conditions. Insurance companies will simply not offer coverage for conditions with high probabilities of occurrence and people will value health insurance less because of that. What I’m trying to say is that better information about future disease conditions will make health insurance a marginal industry, the better our predictive power becomes, the more margin they become (because they increasingly provide less and less value).

    Theodore,
    You’ve hit the nail on the head here and the problem with the US system as it stands now. Insurance industry would indeed become marginal and of little value to most individuals except to address contingencies. That will leave those same individuals without healthcare unfortunately, since that is how our system works. It is indeed an untenable situation.

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