What are the benefits of genetic testing
Genetic testing on the Internet: development with risks
THEMES OF THE TIME
Also in Germany are becoming more and more common
Genetic testing distributed freely on the Internet.
Hardly any other medical topic is currently attracting as much public interest as human genetics. A central theme is that of genetic examinations, so-called genetic tests. Research has made great strides in this area in recent years. For more and more diseases, the molecular genetic basis is becoming known and diagnosable.
Doctors in Germany almost unanimously warn against selling genetic tests freely over the Internet. There are many reasons for this, such as excessive demands on patients and the risk of abuse. What has long been part of everyday life in the USA is now also returning to Germany. There are still only a few providers who offer genetic tests for those interested on German-language websites. Nevertheless, the offer already covers a wide range of diseases - from Alzheimer's to high blood pressure and hereditary breast cancer. Prices range from 130 to 1,600 euros.
However, the diagnostic options are only one aspect. With a few exceptions, there are no therapeutic options for most hereditary diseases. In some cases, preventive measures can delay or prevent the occurrence of a disease, for example in hereditary colon cancer (6). Timely and adequate treatment of symptoms, for example in the case of Alzheimer's disease, can improve the patient's quality of life. However, research is still a long way from an initial gene therapy. For the patient, this usually means that he learns about the likelihood of illness without these being treated curatively.
Not least because of this, genetic tests are controversial. A central point in the public discussion is the possible use of the data by private insurance companies (5, 9). Genetic tests are largely accepted in the German population, as a survey showed (2). However, the disadvantages were also clearly seen, such as the misuse of the data by third parties, the possible increase in abortions and the discrimination against gene carriers.
The “normal” way of having a genetic test carried out previously meant that a general practitioner or specialist recommended such a test on the basis of discrete clinical characteristics and, if necessary with the help of a human geneticist, initiated the examination or made a corresponding referral. The Internet now opens up the possibility of offering genetic tests directly to potential customers independently of this route.
In July 2002 we used various search engines (google.de, alta vista.de, lycos.de, fireball.de and others) and various key words (genetic test, genetic examination and the like) to research which genetic tests were free for German customers on the German-speaking Internet are for sale. This does not take into account the numerous options available to sell paternity tests - including a genetic test - via the Internet (see, for example, www.0800-gen test.de). Internet pages of practices or laboratories that offer their services are also not relevant
Gentest24 homepage (www.gentest24.de)
describe (for example www.gentest.de), but without selling them directly. Foreign providers, for example in the USA, who deliver to Germany, are also not considered.
Result: In Germany, too, interested parties can now order genetic tests via the Internet, provided they have the necessary financial resources. However, so far only two providers (gentest24.de, gen-untersprüfung.com), whose range of services is outlined in the table, could be determined. An evaluation of the offers is not possible here. For this it would be necessary to actually check the services, that is, to order genetic examinations and have them independently assessed. !
Both companies offer advice on their genetic tests. In the case of hereditary breast cancer or colon cancer, where personal genetic counseling is required (3), this is also required by the provider. Advice, reporting of findings and therapy recommendations are otherwise only given in writing. If necessary, suitable doctors will be named as contact persons. With the exception of fragile X syndrome, the DNA material is obtained by the patient himself using cotton swabs as a saliva sample from the oral mucosa and sent in by post.
When looking at the website, the clear differences in the range of offers as well as in the quality and scope of the additional information on the tests become apparent. If the tests are assumed to be identical (for example Alzheimer's), the prices vary considerably. In particular, it should be criticized with provider 2 that important information on the genes examined is missing for a professional assessment. This is all the more worrying when tests, for example, for "alcohol tolerance" are offered. This new service has a number of advantages and disadvantages.
Benefits of genetic testing
The patients make self-determined decisions for or against certain genetic tests and decide for themselves how they want to proceed with the results. This takes into account the need to actively shape one's own health - an important aspect of health behavior.
The internet also offers anonymity. Your own family doctor, another specialist or the health insurance company does not need to know anything about the implementation or the result.
The examination provides the patient with certainty as to whether there is a genetic defect. As the providers also emphasize, this opens up opportunities for early detection and preventive measures as well as for further examinations.
In rare cases, patients who have been denied a “normal” genetic test (for example, if there is no family history) can still come to a result that can have a decisive influence on their future health behavior.
Hypothetically, it is also conceivable that life and health insurances will grant a discount if negative test results (no mutation) are produced by a genetic test. It would also be an advantage if insurance companies were relieved of pressure in the case of self-financed genetic tests.
Many of the tests are controversial in terms of their informative value. Some test results say nothing at all or lead to wrong conclusions without a detailed anamnesis. For many diseases it has also been proven that - despite the existing mutation - the effects of environmental influences are decisive for the outbreak of the disease. Furthermore, this interplay between the system and the environment has not yet been clarified in many cases, so that despite the existing system, disease never occurs throughout life. Notification of a mutation could result in patients taking precautionary measures that are not necessary.
The tests are given the status of a generally recognized screening instrument, which is not justified, by being offered on the Internet to anyone interested. The BRCA tests should only be offered to people at risk with an appropriate family history (1, 12). Patients could get the impression that genetic testing is a precautionary measure, such as a healthy diet or abstaining from nicotine and alcohol. For example, on almost every page of gen-investigation.com it is emphasized: "Only those who know their risk can prevent."
These offers also put patients under pressure to make decisions. If, after medical advice, a genetic test was not deemed necessary, there would be the option of obtaining a final statement via the Internet for a fee. Feelings of guilt or fear can be the result without there being any cause for it (7).
In numerous genetic diseases, several potentially affected genes are known, but often not all of them can be diagnosed. For example, in hereditary spastic paraplegia, 15 gene loci are known, but only four associated genes (11). The test for hereditary colon cancer, which is also offered on the Internet, examines MLH1 and MSH2. The genes MSH6, PMS1 and PMS2 (6), which are also associated with HNPCC, are not taken into account.
Sample page from the offer at www.gen-untersprüfung.com
A negative test result can lead to false certainties, because it can never be completely ruled out that the patient will develop this or a similar disease.
The genetic test providers present the acquired knowledge as an advantage. Due to the lack of or few therapeutic options, the statement as to whether knowing or not knowing is better is a deeply subjective assessment. The patients here make medical decisions for which they do not have a sufficient basis for making decisions. The detailed written information on the website explains the genetic tests offered and their background, but the important clinical view of the patient's overall personality is missing. A singular, exclusively diagnostic service is offered.
The interpretation of the results and the planning of therapeutic measures overwhelm the patients, even if the providers make suggestions. Misuse, for example by sending in analytical material from a stranger, is easier because there is no personal contact between the doctor and the test person.
The potentially far-reaching psychological consequences of genetic tests, from depression and anxiety to suicidal tendencies, are not taken into account.
Ultimately, a patient cannot decide which services to buy here and whether they are worth their price. A quality control of the results, which is usually done by the doctor, is not necessary. The tests for hemochromatosis, the most common monoallelic genetic disease in Germany, are offered for 207.84 euros and 500 euros, respectively. In a large-scale study by the Hannover Medical School, the cost of performing the test was estimated at ten DM (8). In addition, the costs for the genetic examinations ordered on the Internet are not covered by the health insurances, so that less financially strong patients cannot take advantage of the offer.
The tests currently available on the Internet represent a selection whose criteria are not clear to patients: Are they the most important or most common genetic diseases? The worst? The most diagnosable? The ones with whom the most can be earned? For example, the Huntington's disease gene (on chromosome 4p16.3) has also been molecularly diagnosable since 1993 (4), and this disease has a higher prevalence than some other syndromes (such as familial hyperlipoproteinemia type 3) for which it is im Internet tests there.
Genetic tests on the Internet have also become a reality in Germany. A new development in medical services is emerging here and it is to be watched carefully. In view of the fact that a genetic test is suggested at any time by the attending physician if there is an appropriate indication and is usually financed by the health insurance fund, there is no need for patients to order genetic tests via the Internet. Since a genetic testing law is not yet in force in Germany, it is a controversial gray area from a legal point of view (10).
The sale of genetic tests on the World Wide Web also seems to be a lucrative market, as the prices suggest. It can therefore be assumed that the offer will increase quickly. To what extent this will have a future and what effects it will have on the health care system cannot be foreseen at the moment.
How this article is cited:
Dtsch Arztebl 2002; 99: A 2599-2603 [Issue 40]
The numbers in brackets refer to the bibliography, which is available on the Internet (www.aerzteblatt.de).
Dipl.-Psych. Hendrik Berth
Carl Gustav Carus University Hospital
Technical University Dresden
Fetscherstraße 74, 01307 Dresden
Email: [email protected]
Beckmann MW, Niederacher D, Goecke TO et al .: High-risk families with breast and ovarian cancer. Dtsch Arztebl 1997; 94: A 161-167 [Issue 14]
Berth H, Dinkel A, Balck Q: Genetic tests for everyone? Results of a representative survey. Dtsch Arztebl 2002; 99: A 1030-1032 [Issue 15]
German Medical Association: Guidelines for the diagnosis of genetic predisposition to cancer. Dtsch Arztebl 1998; 95: A 1396-1403 [issue 22]
Epplen JT, Przuntek H: Huntington's Disease. Dtsch Arztebl 1998; 95: A 1098 [Issue 17]
Gerst T: time bomb. Dtsch Arztebl 2001; 97: A 1098 [Issue 17]
Lamberti C, Caspari R, Friedl W et al .: Hereditary colon cancer: symptoms, diagnostics and cancer prevention. Dtsch Arztebl 1996; 93: A 32–36 [Issue 1-2]
Leinmüller R: genetic tests. Sometimes a business with fear. Dtsch Arztebl 2002; 99: A 1487-1488 [issue 22]
Meyer R: hemochromatosis. Does screening using genetic testing make sense? Dtsch Arztebl 2001; 98: A 672-673 [Issue 11]
Regenauer A: No interest in the transparent patient. Dtsch Arztebl 2001; 98: A 593-596 [issue 10]
Judge EA: Geneticizing Medicine. Dtsch Arztebl 2002; 99: A 759 [Issue 12]
Sauter S, Neesen J, Paulus W et al .: Hereditary spastic paraplegia. Dtsch Arztebl 2002; 99: A 434-440 [issue 7]
Schmutzler RK, Beckmann MW, Kiechle M: Familial mammary and ovarian carcinoma. Dtsch Arztebl 2002; 99: A 1372-1378 [issue 20]
|1.||Beckmann MW, Niederacher D, Goecke TO et al .: High-risk families with breast and ovarian cancer. Dtsch Arztebl 1997; 94: A 161-167 [Issue 14]|
|2.||Berth H, Dinkel A, Balck Q: Genetic tests for everyone? Results of a representative survey. Dtsch Arztebl 2002; 99: A 1030-1032 [Issue 15]|
|3.||German Medical Association: Guidelines for the diagnosis of genetic predisposition to cancer. Dtsch Arztebl 1998; 95: A 1396-1403 [issue 22]|
|4.||Epplen JT, Przuntek H: Huntington's Disease. Dtsch Arztebl 1998; 95: A 1098 [Issue 17]|
|5.||Gerst T: time bomb. Dtsch Arztebl 2001; 97: A 1098 [Issue 17]|
|6.||Lamberti C, Caspari R, Friedl W et al .: Hereditary colon cancer: symptoms, diagnosis and cancer prevention. Dtsch Arztebl 1996; 93: A 32–36 [Issue 1-2]|
|7.||Leinmüller R: genetic tests. Sometimes a business with fear. Dtsch Arztebl 2002; 99: A 1487-1488 [issue 22]|
|8.||Meyer R: hemochromatosis. Does screening using genetic testing make sense? Dtsch Arztebl 2001; 98: A 672-673 [Issue 11]|
|9.||Regenauer A: No interest in the transparent patient. Dtsch Arztebl 2001; 98: A 593-596 [issue 10]|
|10.||Judge EA: Geneticizing Medicine. Dtsch Arztebl 2002; 99: A 759 [Issue 12]|
|11.||Sauter S, Neesen J, Paulus W et al .: Hereditary spastic paraplegia. Dtsch Arztebl 2002; 99: A 434-440 [issue 7]|
|12.||Schmutzler RK, Beckmann MW, Kiechle M: Familial mammary and ovarian carcinoma. Dtsch Arztebl 2002; 99: A 1372-1378 [issue 20]|
Genetic testing on the Internet: development with risks
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