Genetic Testing and Health Insurance in the New York Times

by Dr. Hsien-Hsien Lei
Posted February 24, 2008 in DNA Testing, DNA and the Law

Genetic information should by rights be our own to share when we think it’s appropriate. The reality, however, is not so straightforward. In today’s New York Times article, Fear of Insurance Trouble Leads Many to Shun or Hide DNA Tests, Amy Harmon writes of people who have a very real fear of having to pay jacked up insurance premiums or being denied insurance altogether. The problem may be especially bad in the US where health insurance is not a citizen’s right.

The culture of secrecy around genetic information is stronger in the United States, some experts say, than in countries where people are guaranteed health care.

In the UK (where I currently live), medical genetic testing is available through the National Health Service (NHS). While there does not appear to be any issues regarding insurance coverage should a person test positive for a disease-causing mutation, greater issues are availability and timeliness of testing and results. Also, many UK citizens have private insurance through their employers in addition to their free NHS insurance.

Two years ago, Cancerbackup found in a survey of regional genetics centers that waiting time for appointments to receive a BRCA genetic test can be as long as nine months with a further wait of 1 to 2 years for results. In some ways, this could be construed as discrimination in that other forms of testing are probably taken more seriously and performed more speedily.

From CancerBackup regarding the Concordat and Moratorium between the Department of Health and the Association of British Insurers (lasting until November 1, 2011):

In the agreement, amongst other things, insurers give ten commitments on the information that they will ask of customers. For example, customers will not be asked to:

• have a predictive genetic test in order to obtain insurance
• tell them about a family member’s test results
• tell them about any predictive or diagnostic genetic test results acquired as part of clinical research
• tell them about any predictive test results that are made available after their policy has started, for as long as that policy is in force.

There are caveats to the Moratorium including one in which insurers can ask about Genetics and Insurance Committee approved predictive tests for policies over £500,000 of life insurance, or £300,000 of critical illness insurance.

Last June, BMJ debated the use of genetic information to determine insurance eligibility. I, along with other readers, sided with those who believe that insurance companies do not have an automatic right to our DNA data while HG Stern at InsureBlog disagreed .

…to the extent that such information is helpful to an underwriter, it’s in the realm of pricing (or whether or not to offer coverage at all). It’s really no different than knowing whether or not the applicant is a smoker, or a diabetic, or recently had knee surgery. All of this goes into the mix, and genetic information may (or may not) play some role.

Of course, the results of genetic testing may be moot if you have a strong family history of a certain disease. If so, a negative genetic test could work in your favor.

For other comments on the NY Times story:

• Schelly Talalay Dardashti – New York Times: Genetics and insurance
• John Hawks – DNA testing and health insurance
• Misha Angrist – Dear GINA…you never call, you never write
• Kevin Drum – DNA and the Insurance Industry
• Harold Pollack – Genetic discrimination: Misplaced worries, but right argument for health reform
• Doug Masson – Rewarding Ignorance
• Steven Murphy – Unfounded NYT article

Photo credit: “The life insurance office,” Wellcome Collection under Creative Commons

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1 Comment

Comment by StevenMurphy MD

2008-02-24 18:50:34

Hsien,
There is discrimination everywhere. We just have to weigh the risks versus the benefits…..A tough thing to do when emotion rides high. That’s why doctors shouldn’t care for their family.
-Steve
http://www.thegenesherpa.blogspot.com

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