Autonomous Choice and the Right to Know One's Genetic Origins

2014 ◽  
Vol 44 (2) ◽  
pp. 36-37 ◽  
Author(s):  
Vardit Ravitsky
Keyword(s):  
Right To Know ◽  
Autonomous Choice ◽  
The Right To Know ◽  
Genetic Origins ◽  
The Right

La spinta verso una legislazione europea comune sul diritto di conoscere le proprie origini genetiche / The push towards common European legislation with respect to the right to know one’s genetic origins

2018 ◽  
Vol 66 (6) ◽  
pp. 747-761
Author(s):  
Gianluca Montanari Vergallo ◽  
Natale Mario Di Luca
Keyword(s):  
European Union ◽  
Human Rights ◽  
Right To Know ◽  
The European Union ◽  
European Legislation ◽  
Anonymous Birth ◽  
European Court ◽  
The Right To Know ◽  
Genetic Origins ◽  
The Right

A venti anni dalla sua approvazione, la Convenzione di Oviedo necessita di un aggiornamento. Infatti, non affronta la questione del diritto dei bambini nati da fecondazione eterologa di conoscere l’identità dei donatori di gameti. La Corte europea dei diritti dell’uomo ha recentemente stabilito che: a) il diritto di conoscere le proprie origini biologiche è tutelato dall’art. 8 della Convenzione dei diritti dell’uomo; b) tale diritto deve essere bilanciato con quello della madre biologica di rimanere anonima (c.d. parto anonimo). Al fine di trovare tale bilanciamento, una possibile soluzione consiste nel richiedere ai giudici di convocare la madre per chiederle se intende revocare l’anonimato. Se la madre ribadisce la propria originaria intenzione di rimanere sconosciuta, il Tribunale non può consentire al figlio di conoscere la sua identità. Gli autori analizzano anche altre due questioni non prese in considerazione dalla Corte europea: a) l’equilibrio tra il diritto di conoscere le proprie origini e quello dei donator di gamete all’anonimato; b) se tale diritto dei bambini nati da fecondazione eterologa vincoli i genitori legali a rivelargli le modalità del concepimento. Tali problemi e l’importanza degli interessi in gioco inducono gli autori a sostenere che la scelta di usare il citato art. 8 come criterio di giudizio non è affatto ottimale. Appare preferibile affrontare queste questioni attraverso un aggiornamento della Convenzione di Oviedo o comunque con modalità tali da arrivare ad una regolamentazione che sia uniforme all’interno dell’Unione europea. ---------- Twenty years since it was opened for signature, the Oviedo Convention needs updating. It does not deal with the issue of the donor-conceived children’s right to know the identity of the gamete donors. The European Court of Human Rights has recently stated that: a) the right to know one’s biological background is protected by article 8 of the Convention on Human Rights; b) such a right must be balanced with the biological mother’s right to anonymity (anonymous birth). In order to find such balancing, a possible solution might be to require judges to summon mothers to ask them whether they would like to reverse their decision to be anonymous. If the mother reaffirms her intention to remain unknown, the court may not allow the child to learn of her identity and contact her. The authors also analyze two other issues not taken into account by the European Court: a) the balancing between the right to know one’s origins and the gamete donors’ right to anonymity; b) whether the donor-conceived children’s right to know would make it mandatory for legal parents to disclose conception procedures. These problems and the importance of the interests at stake induce the authors to argue that the choice to keep using the above mentioned article 8 as yardstick is far from ideal. It appears to be far preferable to deal with these issues while updating the Oviedo Convention or in such a way as to incentivize the enactment of legislation that would be uniform throughout the European Union.

Legislative Proposals for Reversing the Cancer Epidemic and Controlling Run-Away Industrial Technologies

2000 ◽  
Vol 30 (2) ◽  
pp. 353-371 ◽  
Author(s):  
Samuel S. Epstein
Keyword(s):  
Food Production ◽  
Genetically Engineered ◽  
Right To Know ◽  
Criminal Sanctions ◽  
Adverse Impacts ◽  
The Right To Know ◽  
Legislative Proposals ◽  
Democratic Rights ◽  
Genetically Engineered Food ◽  
The Right

An interlocking legislative complex is proposed for the control of carcinogenic and other adverse impacts of established run-away petrochemical and radionuclear technologies, with particular reference to winning the losing war against cancer. These proposals are also applicable to the poorly recognized, potentially adverse public health and environmental hazards of emerging technologies, particularly genetically engineered food production. The proposals embody fundamental democratic rights—the right to know and balanced and transparent decision making—the “Precautionary Principle,” reduction in the use of toxics, incentives for the development of safe industrial technologies, and criminal sanctions for suppression or manipulation of information.

P–477 The child’s right to know vs. the parents’ right not to tell: the attitudes of couples undergoing fertility treatments towards identity-release gamete donation

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
J Simas ◽  
D Braga ◽  
A Setti ◽  
R Melamed ◽  
A Iaconell ◽  
...  
Keyword(s):  
Well Being ◽  
Small Sample ◽  
Right To Know ◽  
Gamete Donation ◽  
Biological Origin ◽  
Gamete Donor ◽  
The Right To Know ◽  
The Subject ◽  
The Right ◽  
The Relationship

Abstract Study question Do couples undergoing assisted reproduction treatments (ART) have a different perception of anonymous vs identity-release gamete donation than a population interested in the subject? Summary answer Compared with a population interested in the subject, more couples undergoing ART believed the child shouldn’t be given information that would identify the gamete-donor. What is known already Recent research has investigated the psychological well-being of parents and children born through gamete donation, focusing on the possibility of having the donor’s identity revealed. Gamete donors have traditionally been anonymous to recipients and offspring; however, there is a global trend towards programs using donors that are identifiable to the resulting offspring at maturity. While some countries only allow the use of identity-release egg donation, others only allow anonymous-donation, and in some countries both types of donation are practiced. However, the attitudes concerning anonymous vs identity-release gamete donation, in a country where only anonymous donation is allowed, are still unknown. Study design, size, duration This cross-sectional study was performed from 01/Sep/2020 to 15/Dec/2020. For that, surveys through online-platforms were conducted, including either patients undergoing ART, (ART-group, n = 358) or those interested in the subject, who accessed the website of a university-affiliated IVF-center (interested-group, n = 122). Participants in the ART-group were invited via e-mail, with a cover-letter outlining the survey and a link to access it and participants in the interested-group accessed the questionnaire via website. Participants/materials, setting, methods The survey collected information on demographic characteristics and the participant’s attitudes towards anonymity of gamete donors. The questions were: (i) In the case of children conceived through ART, do you believe that revealing the method of conception may affect the relationship between children and their parents? (ii) Once the method of conception is revealed, do you believe that the child has the right to know the gamete donor? (iii) If yes, when? Main results and the role of chance Most of the participants answered that the relationship between children and parents wouldn’t be affected by the child’s knowledge of the origin of their conception, regardless of the group (83.6% vs 82.7%, for ART-group and interested-group, respectively, p = 0.868). Most participants in the ART-group answered that the sperm donor identity shouldn’t be revealed to the child, while only half of the interested-group stated the same (65.4% vs 50.8%, p = 0.044). The same result was observed when participants were asked if the oocyte donor should be identifiable (64.8% vs 50.8%, p = 0.050). When asked when the donor’s identity should be revealed to the child, no significant differences were noted in the responses among the groups (p = 0.868). Most of the participants who believe that the child has the right of learning the donor’s identity, stated that “the donor’s identity should be revealed if the child questions its biological origin” (67.2% vs 67.5%, for ART-group and interested-group, respectively). “Since birth” was the second most common response, (21.0% vs 19.7%, for ART-group and interested-group, respectively), while “when the child turns 18 years-old” (9.2% vs 11.2%, for ART-group and interested-group, respectively), and “sometime during teenage years” (2.5% vs 2.4%, for ART-group and interested-group, respectively) were less common answers. Limitations, reasons for caution Lack of adequate opportunities to conduct face to face interview and lack of knowledge of the real state of the website participants, concerning infertility or being involved in ART. The retrospective nature of the study and the small sample size may also be reasons for caution, Wider implications of the findings: It has been discussed that, whether or not children or parents are harmed by knowing their biological origins, donor offspring have the right to know. However, when facing the situation, couples undergoing ART would argue that in case of gamete donation, there are reasons for not telling the child. Trial registration number Not applicable

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