The quick genetic test from a few drops of spit is becoming cheaper and cheaper. While it cost around 700 euros when it was introduced in Germany, the predictions for your personal stroke or breast cancer risk are now available from as little as 90 euros. Almost exclusively foreign providers are in the running, such as the American website “23andMe” (“23” stands for the number of chromosome pairs), “DeCODEme” from Iceland or “Navigenics”, USA.
The companies promise a lot: Do you want to know if you will ever suffer from hair loss? A look at chromosome 12 should provide information. Do you need to be careful about your alcohol consumption? Will your child develop ADHD? The tangled chain knows the answer. Theoretically, character traits and preferences can also be filtered out of the DNA. Indeed, research on identical twins shows that there are striking parallels among couples raised apart. But what can you really decode, and what does that mean for us in concrete terms?
The private providers only surf to certain points on the DNA that have become statistically conspicuous in patients. According to self-promotion, they also want to serve health education. Charles, 55, can be seen on the DeCodeme website. He decided to decode his cardiovascular disease risk. The picture shows him slim and sporty. And he looks like he’s known how to keep cardiovascular risk at bay for a long time. But the test result would be the same if he were a severely overweight smoker in his 30s who already has fatty heart disease. Because this type of gene analysis says nothing about the real individual health profile. And what’s even worse: It doesn’t even say anything about the hereditary diseases, that you have really already decoded. We spoke to three experts about the sense of suchTests.
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The molecular biologist
“DISEASES HAVE GENETIC PART, BUT WE’RE JUST BEGINNING TO UNDERSTAND THEM”
The Kiel scientist Prof. Philip Rosenstiel is not opposed to genetic analysis – quite the contrary. The doctor belongs to a molecular biology institute that works on decoding signs of disease in the DNA. He is all the more skeptical about the genetic tests from the Internet.
“They make statements like, ‘Your risk of developing breast cancer is half that of the general population.’ Then people feel relatively safe and may no longer go to check-ups.” The abnormalities in the DNA examined there are nothing more than a snapshot of a small flaw in the genome, so-called single base polymorphisms (SNP). Frequently, many of these SNPs are involved in the development of a disease risk. “We know that this section is associated with a certain disease. But we can often only point to the gene locus. We do not know which interrelationships of the protein processes take place there. And we still don’t understand enough how the SNPs subsequently translate into disease. There are about 20 intermediate steps missing. Unlike monogenic hereditary diseases such as hemophilia. But Prof. Rosenstiel is certain that the genetic components of diseases such as asthma, Crohn’s disease or rheumatism will be discovered. “It’s going to trigger a big shift in thinking — but it’s not going to happen in the next few months or years.”
The human geneticist
“A LOOK AT FAMILY HISTORY IS MORE RELIABLE THAN A DNA TEST ON THE INTERNET”
It’s his job to explain the results of genetic tests to people or to advise them not to do so in the first place. Prof Wolfram Hennis head of a genetic counseling center. The doctor will refer you there if you suspect a hereditary disease. Or if artificial insemination is planned. Advice from a human geneticist is covered by health insurance in Germany. He is very outraged by the Internet tests. “Last year I was invited by Günther Jauch to be tested. I turned it down, but Günter Jauch went along with it. It turned out that he must be short and fat. But what is really dramatic: In a patient with proven hereditary colon cancer, this tendency was not detected at all. The tests do not ask about the high risks of real hereditary diseases. That is far too expensive and time-consuming. A targeted genetic test for hereditary breast cancer, for example, costs around 2,000 euros and for muscle atrophy up to 10,000 euros.”
People don’t come to Prof. Henn with abstract worries, but with concrete fears. And here the following applies: “What is the consequence of the result? Is there a possibility of prevention.” An example: the incurable Huntington’s disease only breaks out after the age of 30 – until then you are completely healthy. “Only a third of those affected want to know in advance whether they will become ill. The no to the genetic test can also be the result of a consultation. DNA testing over the internet is nonsense. But that’s the way people are: you can take a fortune teller’s predictions for nonsense a hundred times over, but something sticks and weighs you down.”
The data protection officer
“AS THE DECODER OF GENES PROGRESS, THE DATA ARE HANDED OUT…”
Is there anything more personal than your own DNA? Data protection officer Prof. Johannes Caspar worries that such data does not get to unauthorized persons . Because do those affected really realize what they are revealing? Many even participate in the exchange of analyzes among themselves or even allow third-party companies to evaluate them. “In general, data on the Internet is not secure. They can be copied and reused at any time without consent or knowledge.”
However, it becomes particularly critical when you imagine that the decoding of the DNA is progressing. “There is a risk that this data could fall into the wrong hands. Employers’ knowledge of genetic disease predispositions can lead to disadvantages at work, such as non-employment or termination. Or insurance companies can deny insurance coverage.” Without ever knowing the real reasons. “Particularly risky is passing it on to companies that are not based in Germany. The state protection of such sensitive data is z. In the USA, for example, they are not comparable to the standards that exist here.” It is also not a nice idea that word gets around among friends and colleagues that you have a predisposition to certain health problems.
The “1000 Genomes Project”
- The genome of all people is 99 percent identical. So it’s the variations that have it all. The goal is therefore to completely sequence the genomes of 1,000 people and to decode the genetic information down to the smallest unit. Research institutes from all over the world are participating in the “1000 Genome Project”.
- A risk map is to be drawn on the basis of this sequencing in order to learn more about the development of diseases . The anonymized data will be fed into databases and will be accessible to all scientists.
Where do I come from
Were the ancestors wild Cossacks or did some even come from Niger in Africa? The origin of the ancestors can be determined fairly well with the help of a simple gene analysis from the internet providers. However, the more precise and concrete you want to know, the more complex the investigation becomes. In the USA family research, genealogy, is now the second most popular hobby – after gardening. It is even common for different branches of family members to undergo genetic testing to see if they are actually related or if the family tree has been cheated. A frequent phenomenon: mothers have always liked to keep quiet if their child did not come from the husband.
