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Question:

From Roselle Park, New Jersey, USA:

My 20 month old son was recently diagnosed with Type 1 diabetes. My husband wants to have our four year old checked for antibodies to see if he might be pre-diabetic.

I am interested in knowing how private the results of these tests are kept and if he tests positive can it adversely affect his future in terms of the knowledge being used against him, i.e., insurance coverage, etc.

Answer:

First of all I think your husband is right to suggest antibody testing for your four year old. The chances of being negative are about 95% and even if the test is positive you could talk to your doctor about the national Diabetes Prevention Trial (DPT-1).

The security of results is on the whole good. Tests are usually done in small research oriented laboratories and are processed under accession numbers rather than names. The data is nearly always password protected; but not encrypted. In other words anyone who worked in the laboratory could access a given result if they really wanted to; but the weakest security link is probably the medical record. For a curious outsider discovery would be very difficult.

The insurance issue has been a concern for some time; but so far there has been no recorded instance of insurance denial simply on account of an antibody test result. When you think of it most health insurance policies are group ones with premiums being based on a complex actuarial assessment of risk in that particular population as a whole not on individual characteristics. Potentially of course there is a problem when applying for an individual policy; but so far having a positive antibody test has not been considered a pre-existing condition.

In any case I think the advantages conferred by an antibody test, positive or negative, far outweigh the rather tentative disadvantages in terms of insurance.

DO'B

Additional comments from Lois Schmidt Finney, diabetes dietitian:

I coordinate the Diabetes Prevention Trial at the University of Minnesota, and I am happy to see your interest in the study. All information is done via study number and it is kept confidential. We have found that oftentimes folks will tell their health care provider they are in a diabetes study and then that goes on the record, so it is not a lack of confidentiality on our part.

We do only see about 3-4% positives for Islet Cell Antibodies, so only a small percentage are at a slightly higher risk of developing diabetes. If someone is ICA positive, they can undergo further testing to determine risk, but it is totally up to them. It would also be good to test the parents, since we have found a larger number of parents who are ICA positive than ever anticipated. You can call the DPT number 1-800-425-8361 to find the nearest center. Or give me a call here at 1-800-688-5252 ext. 58944.

LSF

[Editor's comment: You may wish to consider purchasing a life insurance policy for your four-year-old now, if you can afford it, since obtaining life insurance for someone with diabetes is usually impossible outside of a group policy. JSH]

Original posting 18 Jul 1998
Posted to Research: Causes and Prevention and Social Issues: Insurance/Costs

  
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Last Updated: Tuesday April 06, 2010 15:08:58
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