Right not to know

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The right not to know , sometimes referred to as the right to not know, protects individuals from receiving information they do not wish to know because knowing it could affect their way of life.

General

The right not to know is particularly important in the medical field. In principle, the attending physician has a medical duty to provide information : He must inform the patient about his diagnosis and possible treatments so that the patient can decide for himself whether or which treatment he wants. However, this duty has limits in certain situations, namely where knowledge of one's own health situation can negatively influence thinking, feelings, life planning and lifestyle. To prevent this, everyone should have the choice whether they want to know their health situation in detail or not. The right not to know is therefore of practical importance, especially in the case of illnesses or disease predispositions that can be diagnosed, but which, according to the current state of medicine, are not curable.

The right not to know is often used today in connection with genetic examinations. However, the right not to know about possible HIV infections was already being discussed in Germany in the 1980s and 1990s . At the time, doctors and politicians called for routine HIV tests to be carried out during blood tests . The test opponents invoked the right not to know and were able to prevail. To date, HIV tests are prohibited without the consent of the person concerned. However, if the patient has consented to the test and is HIV-positive, the doctor must urgently point out the danger to the partner in the event of a possible danger to third parties and explain the consequences of his or her actions to the patient. The informed, infected patient cannot - against their better judgment - invoke the right not to know.

The right not to know is also of practical importance today when it comes to DNA examinations for medical purposes. For example, the hereditary disease Huntington's disease has been detectable by genetic analysis since 1993. However, it cannot be cured, so that just knowing one's predisposition to this disease can significantly impair quality of life.

Germany

In Germany, the right not to know is viewed as a special form of personal rights and assigned to the right to informational self-determination . In a ruling by the Higher Regional Court of Celle in 2003, it is referred to as a “negative variant of the right to informational self-determination”.

The German Genetic Diagnostics Act (GenDG) grants the right not to know the results of genetic tests: Genetic tests and genetic analyzes may only be carried out if the person concerned has consented to them. Consent includes both the decision on the scope of the genetic test and the decision as to whether and to what extent the test result is to be disclosed or destroyed ( Section 8 (1) GenDG ). Before consent is obtained, the person concerned must be informed about the nature, significance and scope of the genetic test ( Section 9 (1) GenDG ). Clarification must also be provided about “the right of the data subject not to know, including the right not to take note of the test result or parts of it, but to have it destroyed” ( Section 9 (2) No. 5 GenDG ).

If the right not to know one's own genetic predisposition is violated, the person concerned can, if necessary, assert claims for damages in accordance with Section 823 (1) BGB . However, it is not enough that the person in question is unintentionally informed about the genetic makeup of other people close to him. The Federal Court of Justice (BGH) therefore dismissed the lawsuit of a mother in 2014 who had inadvertently learned from a doctor that there was a 50 percent probability that her underage children had the hereditary disease Huntington's disease. In the opinion of the BGH, the mother could not derive her own claims for damages from a possible violation of the general personal rights of her children.

Austria

The Genetic Engineering Act (GTG) of the Republic of Austria contains similar information and consent regulations as the German Genetic Diagnostics Act. The person concerned, the “advice seeker”, must be informed at the beginning of the counseling session that they can state at any time that they do not want to know the result of the analysis and the consequences that can be derived from it. This right not to know exists even after consent to the genetic analysis or after counseling has been given ( Section 69 (5 ) GTG ).

Switzerland

In Switzerland, the Federal Act on Human Genetic Testing (GUMG) stipulates that every person has the right to refuse to see information about their genetic makeup ( Art. 6 GUMG).

International right

The Convention on Human Rights and Biomedicine of the Council of Europe postulates in Article 10 No. 2 Clause 1 that everyone has the right to access all information collected about their health. However, Article 10 No. 2 Clause 2 additionally stipulates that the wish to not know is to be respected. Switzerland signed and ratified the convention, while Germany, Austria and Liechtenstein did not.

literature

  • Ruth Chadwick: The right to know and the right not to know from a philosophical point of view . In: F. Petermann, S. Wiedebusch, M. Quante (Ed.): Perspektiven der Humangenetik . Paderborn 1997, p. 195-208 .
  • Jochen Taupitz : The right not to know . In: Peter Hanau , Egon Lorenz , Hans-Christoph Matthes (eds.): Festschrift for Günther Wiese on his 70th birthday . Luchterhand, Neuwied 1998, p. 538-602 .
  • Kerstin Karonline Retzko: Predictive medicine versus a (basic) right not to know . 1st edition. Shaker, 2006, ISBN 978-3-8322-4929-8 .
  • Günther Wiese: Is there a right not to know? Shown using the example of the genetic predisposition of employees . In: Festschrift for Hubert Niederländer on his 70th birthday . 1991, p. 475-488 .

Individual evidence

  1. ↑ Alexander Neubacher : Right to ignorance. In: Der Spiegel 29/2000, p. 40. Online
  2. ↑ Doubter on the pinnacle. In: Der Spiegel 48/1993, p. 218. Online
  3. ↑ J. Breast: Legal questions in connection with HIV infection.
  4. ↑ a b c Federal Court of Justice, judgment of May 20, 2014 - VI ZR 381/13 -, Neue Juristische Wochenschrift 2014, pp. 2190–2192
  5. ↑ Study Commission "Law and Ethics of Modern Medicine": Final report. Bundestag printed matter 14/9020. P. 132 and 175. PDF file
  6. ^ Higher Regional Court of Celle, judgment of October 29, 2003, file number 15 UF 84/03 , margin no. 16 (= NJW 2004, pp. 449-451).