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.
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Video: Rep. Louise Slaughter reflects on 12 year old GINA

Here is Representative Louise Slaughter (D-NY) discussing the importance of GINA on the House floor yesterday:

(If you’re reading via RSS, you might need to go to my site to view the embedded video)

The bill passed in the House 420-3.  If you’re curious, the 3 Nays were Representative Jeff Flake (R-AZ), Representative Ed Royce (R-CA), and Representative Ron Paul (R-TX).

H.R. 493, Genetic Information Nondiscrimination Act  (PDF)

Full proceedings from the Congressional Record, April 25, 2007, ~20 pages (PDF)

Genetic Screening and Life Insurance

Quest Diagnostics recently acquired LabOne, which puts them in the position to get involved in genetic screening of life insurance applicants.  A recent quote from the CFO of Quest (via Medscape):

"Gene-based testing allows you to do predisposition testing, and I don’t know that there’s a lot of that done today on the life insurance side, but certainly that’s an opportunity as we go forward because it gives you a better profile of the individual’s risk," said company Chief Financial Officer Robert Hagemann.

What does this mean for life insurance and those seeking it?  I don’t have the answers to this question at the moment, but the best source of information that I’m aware of on this subject is a recent book edited by Mark Rothstein (who also edited a collection of papers on genetics and privacy).

Mark Rothstein (editor). Genetics and Life Insurance : Medical Underwriting and Social Policy. MIT Press, 2004.

Public Opinion on Genetic Discrimination

Do you agree with the following statement:

"Genetic testing is not a good idea because you might have trouble getting or keeping your insurance."

In a recently published study, nearly 87,000 people were asked this question and 40% agreed.  The authors note  "[d]espite this concern, people were willing to be tested, and we didn’t see any clear sign that this concern was a large

deterrent to being tested."  Interestingly, they found that participants from states with legal protections against genetic discrimination were more concerned about discrimination than residents from states with no legal protections.

Hall, Mark A et al. "Concerns in a primary care population about genetic discrimination by insurers." Genetics in Medicine. 7(5):311-316, May/June 2005. (subscription only)

"Study finds research participants concerned about genetic discrimination" Medical News Today. May 26, 2005.

UK Public Opinion on Insurer Access to Test Information

According to one recent survery, UK public opinion is split approximately 50/50 on whether insurers shoud have access to genetic test results when applying for life and health insurance.  Aggregate data show a slight preference for no insurer access.  Interestingly, the subgroup with a family history of inherited disease tends to be more in favor of insurer access than those without a family history.  A presentation at Imperial College London by Alan Tyler summarized the data with the following figure (click to enlarge):

Disclosure_info_genetics_insurance_2003_1During the same presentation Alan also noted that opinions in the UK were not mixed on the question of universal pricing of insurance.  There is a "blanket rejection" of the idea, suggesting a preference for premiums based on actual or perceived risks instead.  In essence this is a rejection of the "principle of solidarity" and a preference for the "principle of mutuality" as defined elsewhere.

Alan Tyler, "Industry Research" Joint public meeting of the HGC and GAIC, Imperial College, London. July 13, 2004.

Two views on genetic discrimination legislation

Q: Would you have any qualms about undergoing genetic testing in the current environment?

A: Yes, I would. If I were in a situation where I was confident that a particular genetic test was highly indicated and where the results might give me the information that could provide me with an opportunity to reduce my risk, I would be very interested in the test, but I would have to weigh that against the likelihood that this could result in damage to my employability or to my ability to get health insurance. And that would be a serious factor. I would not take that lightly. I do think the risks, while not huge, are real, and until we have a circumstance where that is effectively outlawed by well-written federal legislation, I would be quite uneasy.

This from a recent interview of Francis Collins by American Medical News.  Following the text of the interview is a brief discussion of alternative options, such as working on legislation at the state level instead of federal.  Also, Nancy Fisher of University of Washington wonders whether insurers unable to assess risk are still insurers: "If we say health insurance can’t use [genetic information] to spread the risk, then maybe we don’t want health insurance and should find another way to pay for illnesses."

Read the whole article:
Joel B. Finkelstein, Protecting genetic privacy: Is a law needed? American Medical News.  April 5, 2004.

For more on the views of Francis Collins regarding genetic discrimination legislation, see here.

For more details on the views of Dr. Fisher, see her recent editorial in the Cleveland Clinic Journal of Medicine "Genetic testing and health insurance: Can they coexist?" in pdf.


Genetic Privacy Legislation: U.S and abroad

United States
A press conference will be held in Washington on Thursday to urge the House of Representatives to pass its version of (S.1053) The Genetic Information Nondiscrimination Act (see my posts here and here).  This press release indicates there will be three speakers at the press conference: Sharon Terry (CEO of Genetic Alliance), Heidi Williams (mother of two uninsurable children with a genetic disease), and Francis Collins (director of the Natl. Human Genome Research Institute).

"Insurers to be denied genetic test data." Business World (Ireland). March 30 2004.

Insurance companies are to be denied access to clients’ health information obtained by genetic testing, under a provision of the forthcoming Disability Bill.  Employers and lending institutions will be similarly barred by the provision, according to the Minister of State at the Department of Justice, Equality and Law Reform, Willie O’Dea…He said that the Bill would therefore ban the use of information from genetic tests in assessing an individual for insurance, employment or a mortgage…The Irish Insurance Federation has its own a voluntary code of practice, under which information on genetic tests is not sought for life assurance policies below the value of E381,000.

"Genetic insurance tests OK: Swiss Assembly." Washington Times. March 18 2004.

The Swiss national assembly passed a measure Thursday allowing insurers to require genetic tests when issuing large life or injury insurance policies.  The measure calls for a general ban on required genetic testing, but makes exceptions for life insurance policies worth more than 400,000 Swiss francs ($313,000) or optional injury insurance worth more than 40,000 francs ($31,000)…In issuing the measure, the national assembly asserted genetic information should remain private, but not in cases where privacy makes business impossible…The assembly found denying access to genetic information in the case of extremely expensive insurance polices could make those policies prohibitively expensive or even completely unavailable in Switzerland.

EU conference: Genetics Testing Should Not Be Commercialized

At a recent conference and debate on “New genetic applications and access to healthcare”, organized by the European Commission and the Socialist Mutual Health Fund of Belgium, participants “called for increased vigilance against the risk of commercialisation of genetic testing” according to a press report.

Even though the press report is very brief and there are signs of translation difficulties, e.g. “fake positives” rather than the idiom “false positives”, it portrays the general attitude of the conference to be one of extreme skepticism toward genetic testing that is geared toward medical consumers. In response to the agreement by participants, according to the press coverage, that “it is important to legislate to keep genetic testing in the medical realm,” prescribed by “specialized teams” and out of the hands of private health insurance companies, “[r]epresentatives from the insurance sector argued that the patient should not be told the results [of genetic testing] either.” Another participant, Rudy Demotte, the Belgian Minister for Social Affairs and Public Health, insisted that, according to the press report, “progress in genetics is very slow, and that it is in prevention that genetics becomes very important. He also pointed out that it is not in the interest of anyone to make genetic testing commercially available as this would create the risk of misinformation.” Are there not any knowledgeable medical consumers in Europe? There is no question that potentially thorny issues surround genetic testing, but there must be more creative solutions than simply prohibiting or severely limiting the ability of medical consumers to learn about their own biology.

DNA Discrimination Legislation Needed?

Sharon Begley, Bill Seeking to Ban DNA Discrimination Isn’t Really Necessary, Wall Street Journal, Feb 6 2004. (available only to subscribers)

Last October the Senate unanimously passed (S. 1053) the Genetics Information NonDiscrimination Act (see my post). Sharon Begley, columnist for the WSJ, picks up the story today by noting that the House of Representatives has so far “shown no interest in bringing [the bill] to a vote.” In the house, the bill is called (H.R. 3636) the Genetic Privacy and Nondiscrimination Act of 2003.

She argues that the threat of genetic discrimination is “grossly overstated.” She is not alone in this view. For example, Mark Hall and Stephen Rich of Wake Forest recently looked at the prevalence of requests for genetic information by health insurance companies, in states with genetic privacy laws on the books and those without them. They found “that there are almost no well-documented cases of health insurers either asking for or using presymptomatic genetic test results in their underwriting decisions, either (a) before or after these laws have been enacted or (b) in states with or without these laws.”

She challenges the symbolic value of the bill, “…to allay the fears of people who reject genetic tests in the belief that a positive result could make them uninsurable and unemployable” because “[b]y enshrining genetic status in federal law, we reinforce the widespread and pernicious belief that DNA is destiny. It isn’t…”

She concludes with the following maxims: “Supporters of the genetic discrimination bill should make clear that what they want to guard against is no more than a theoretical risk. They should make equally clear that the risk genes they’re so worried about are not all they’re cracked up to be.”