News Roundup [abridged Versions Appear In The Paper Journal]

Health insurance company offers genetic screening to its clients

BMJ 2004; 329 doi: https://doi.org/10.1136/bmj.329.7479.1364-c (Published 09 December 2004) Cite this as: BMJ 2004;329:1364
  1. Annette Tuffs
  1. Heidelberg

    A German health insurance company has offered all of its customers a test for a genetic disorder so that they can receive early treatment if they are affected. Four thousand customers took up the offer, and 67 were told that they were at high risk of the disease.

    In cooperation with the Hanover Medical School, the Kaufmännische Krankenkasse (KKH), a health insurance company with about two million customers, has offered all of its clients a test for the hereditary disease haemochromatosis, a disorder in which the body stores too much iron. The results were given exclusively to the people tested and not divulged to the company.

    Haemochromatosis is an autosomal recessive disorder, which is characterised by excessive iron absorption in the gut and causes damage to the kidney, liver, and other organs, eventually leading to organ failure. Symptoms usually occur first after the age of 40. The disorder is treated by regular venesection.

    At the Dusseldorf press conference to announce the results of the initiative, Ingo Kailuweit, the company chairman, reported that out of almost 4000 voluntary participants, 67 people were identified as homozygous (carrying two copies of the faulty gene) and therefore at high risk of developing the disease.

    He pointed out that, since the disease was often detected in its late stages, patients identified as carrying two faulty genes for the disorder at an early stage might be spared dialysis and possible kidney and liver transplantation. The estimated cost of treating someone with the disease when it is discovered late is about €100 000 (£69 000; $130 000), a spokesman said, in contrast to the cost of about €14 to test each person. The total cost of testing 4000 people was about €56 000.

    The company does not recommend a screening programme for the entire population. Nevertheless, the number of people willing to take the test was high, the company said. It had managed to recruit 4000 participants with no special advertising. Two thousand people declined the test. An opinion poll at the time of testing showed that almost 90% of the population supported genetic testing as part of a health insurance company's programme if it provided benefit to the participants.

    The test also showed up the pitfalls of genetic testing. About 10% of the German population are healthy carriers of the haemochromatosis gene. Almost 500 healthy carriers were identified (who carried just one copy of the faulty gene), many of whom regretted taking the test. Furthermore, not all people who carry two faulty genes develop the full blown disease, so some of the 67 people identified as being at high risk may remain healthy.

    The German government is drawing up a draft bill on gene testing, which lays down a set of regulations covering the practice. Firstly, customers will not have to disclose the results of any genetic tests to life insurance companies, if they are insuring their lives for less than €250 000. Nor will they ever have to disclose such results to their employers. Secondly, it will be compulsory to offer counselling to all people offered genetic tests.

    Life insurance companies in Germany have issued a moratorium on genetic tests that will run out in 2011. Nevertheless, the government sees the need to put safeguards on screening, since such tests can prove damaging for some people. The new law is expected to be passed in 2006.

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