Ethics Council Take a closer look at genetic testing

Ethics Council gives opinion on genetic testing

01/05/2013

The use of genetic tests has been significantly expanded in recent years, although today they are by no means exclusively for medical purposes. On behalf of the Federal Government, the German Ethics Council has issued an opinion on the "Future of Genetic Diagnosis" and found clear deficiencies, especially in the provision of advice and information on genetic testing.

„With lower costs and faster analysis, as well as diagnostic services that reach out to customers directly via the Internet, more and more people have access to genetic diagnostics“, explains the German Ethics Council in a recent press release, making it clear why an adaptation of the guidelines for dealing with genetic testing is urgently needed. While genetic tests were extremely laborious when they were introduced and were only used in absolute exceptional cases, they can now be carried out within a few days at relatively low cost. In recent years, a broad field of business has developed here in which genetic tests are also offered for non-medical purposes.

Diagnosing unborn children based on the mother's blood
In particular, the so-called prenatal diagnosis (PID) with the help of genetic testing is not only critically discussed by the members of the ethics council. Today, a genetic diagnosis of the unborn child on the basis of maternal blood, according to the Ethics Council, „without the risk of miscarriage.“ But whether this diagnosis is advisable remains socially extremely controversial. Because prenatal diagnostics could lead to an increasing number of parents deciding against the delivery of children with disabilities. Whether the person should decide which life is worth living, is also seen very differently among medical professionals. In its opinion, the Ethics Council has now issued a recommendation on how to deal with prenatal diagnosis. This is explicitly emphasized, „that parents who choose a child with disabilities deserve high social esteem.“ The affected families should therefore be offered more support to relieve them.

Controversial prenatal diagnosis
Unanimously, the members of the Ethics Council spoke in favor of it, „prenatal genetic examinations for further differentiating ultrasound examinations and independent psychosocial counseling“ to bind. However, the Ethics Council's other recommendations were not unanimous, which shows that the ethical controversy over PID is also reflected among members of the Ethics Council. Thus, the majority of the members of the ethics council spoke in favor of it, „to bind the conduct of genetic prenatal diagnosis to the presence of an increased risk of a genetic disorder“, to ensure, „that no non-disease-relevant genetic information about the unborn child and also no mere plant carriers without health relevance for the child are communicated.“ This could lead to parents deciding against hosting due to a relatively undetermined health risk of the unborn child. If the information from the genetic test before the twelve weeks of pregnancy, holds the majority of ethics council members „In addition, the mandatory advice § 218a para. 1 of the Criminal Code before a termination of pregnancy within the framework of the so-called counseling solution is not sufficient and calls for the introduction of a protective concept beyond this.“

In a special vote, eight members of the Ethics Council voted not only to pass on the disease-relevant data but all the genetic information about the unborn child to the parents, if the latter regard this as indispensable for their responsible decision. These members have also worked to change the Genetic Diagnostics Act in the direction that will be adopted in the future „Examination of the unborn child for late-manifesting diseases“ is possible. However, they were in the minority with this position on the Ethics Council.

Recommendations of the Ethics Council for handling genetic tests
Overall, the German Ethics Council has made 23 recommendations on gene diagnostics, in which he, for example „Improvements in informing the population, as well as training, education and training of health professionals on available genetic tests, their relevance and validity“ calls. Also changes of the gene diagnostics law are necessary, „to ensure high standards of education and advice in the face of new developments.“ The majority of the members of the Council of Ethics emphasized that in the future also genetic testing for non-medical purposes would require medical education and counseling, because medically relevant findings could be obtained even in such tests. Also, to protect patients, improved and EU-wide measures for independent consumer education in the so-called „Direct-to-consumer genetic testing“ done, for example, via the Internet.

Do not include genetic tests in the health insurance catalog?
The German Ethics Council comes to the conclusion that the genetic tests to complete genome sequencing provide extensive information, but not all of which are helpful or of importance for medical care. Often, those affected receive „incriminating information without intervention“, so the press release of the ethics council. In addition, the experts see a big one „Risk of misinterpretation and misunderstandings if genetic diagnostics are not offered and performed at a high quality level and taking into account non-genetic factors.“ Here clear improvement in the sense of the patients is required. In a further special vote, four members of the ethics council also advocated that the non-invasive prenatal genetic tests should not be supported by public funding or included in the health insurance catalog, as this procedure would be in conflict with the United Nations Convention on the Rights of Persons with Disabilities protects physical and mental impairments. (Fp)

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Image: Martin Gapa