The right to be forgotten versus the right to disclosure of gamete donors' id: ethical and legal considerations / El derecho al olvido frente al derecho a revelar la identificación de los donantes de gametos: consideraciones éticas y jurídicas / O direito ao esquecimento versus o direito à divulgação da identificação de dadores de gâmetas: considerações éticas e legais

Abstract: 15. The anonymity of gamete donors in the context of medically-assisted reproduction techniques (ART) and the right of the offspring to know their genetic or biological parents' identity is a controversial and widely debated topic in the scientific literature. The positions on the issue in each country are different. Sometimes they are in opposition to each other even in countries with strong similarities, such as those in the European Union (EU), in the framework of shared ethical values. Although some countries still enshrine the rule of anonymity, there is an undeniable tendency to guarantee the right to know one's origins by creating relevant exceptions or abolishing donor anonymity status altogether. 16. This article offers ethical and legal considerations of whether the so-called 'right to be forgotten' (RTBF) could be extended to include gamete donors' right to remain anonymous. This perspective goes against the general trend, certainly in Europe, of recognizing that offspring born from donor gametes have a right to access information relating to their genetic progenitors. The novel addition is to question whether the General Data Protection Regulation (GDPR) might provide fertile ground for questioning this approach, and effectively support those jurisdictions where anonymity is still possible.

Resumen: 20. El anonimato de los donantes de gametos en el contexto de las técnicas de reproducción médicamente asistida (RM) y el derecho de la descendencia a conocer su identidad genética o biológica es un tema controvertido y ampliamente debatido en la literatura científica. Las posiciones sobre el tema en cada país son diferentes. A veces se oponen entre sí, incluso en países con fuertes similitudes, como los de la Unión Europea (UE), en el marco de valores éticos compartidos. Aunque algunos países siguen consagrando la norma del anonimato, es innegable la tendencia a garantizar el derecho a conocer el propio origen creando las excepciones pertinentes o suprimiendo por completo el estatus de anonimato del donante. 21. Este artículo ofrece consideraciones éticas y jurídicas sobre si el llamado "derecho al olvido" podría ampliarse para incluir el derecho de los donantes de gametos a permanecer en el anonimato. Esta opinión es contraria a la tendencia general, ciertamente en Europa, de reconocer que los hijos nacidos de gametos donados tienen derecho a acceder a la información relativa a sus padres genéticos. La nueva adición consiste en debatir si el Reglamento general de protección de datos (RGPD) podría proporcionar un terreno fértil para cuestionar este enfoque y apoyar efectivamente a las jurisdicciones en las que el anonimato sigue siendo posible.

Resumo 25. O anonimato dos dadores de gâmetas no contexto das técnicas de reprodução medicamente assistida (RMA) e o direito da descendência a conhecer a sua identidade genética ou biológica é um tema controverso e amplamente debatido na literatura científica. As posições sobre a questão em cada país são diferentes. Por vezes estão em oposição umas às outras, mesmo em países com fortes semelhanças, como os da União Europeia (UE), no quadro de valores éticos partilhados. Embora alguns países ainda consagrem a regra do anonimato, existe uma tendência inegável para garantir o direito de conhecer as suas origens, criando exceções relevantes ou abolindo completamente o estatuto de anonimato dos dadores. 26. Este artigo oferece considerações éticas e legais sobre se o chamado "direito ao esquecimento" poderia ser alargado para incluir o direito dos dadores de gâmetas a permanecerem anónimos. Esta perspetiva vai contra a tendência geral, certamente na Europa, de reconhecer que os descendentes nascidos de gâmetas doadas têm o direito de aceder à informação relacionada com os seus progenitores genéticos. O novo aditamento é debater se o Regulamento Geral de Proteção de Dados (RGPD) poderá fornecer um terreno fértil para questionar esta abordagem, e apoiar efetivamente as jurisdições onde o anonimato ainda é possível.

Public Appeals Challenging Criteria for Pediatric Organ Transplantation.

In this article, I review the ethical issues that arise in the allocation of deceased-donor organs to children and young adults. By analyzing the public media cases of Sarah Murnaghan, Amelia Rivera, and Riley Hancey, I assess whether public appeals to challenge inclusion and exclusion criteria for organ transplantation are ethical and under which circumstances. The issues of pediatric allocation with limited evidence and candidacy affected by factors such as intellectual disability and marijuana use are specifically discussed. Finally, I suggest that ethical public advocacy can coexist with well-evidenced transplant allocation if and when certain conditions (morally defensible criteria, expert evidence, nonprioritization of the poster child, and greater advocacy for organ transplantation in general) are met.

Las múltiples caras de la maternidad subrogada: ¿aceptamos el caos jurídico actual o buscamos una solución? / The multiple faces of surrogacy: do we accept the current legal chaos or do we look for a solution?

En el presente artículo el Profesor Carlos María Romeo Casabona aborda la situación legal en torno a la maternidad subrogada en nuestro país, exponiendo las posiciones encontradas que esta problemática genera en órganos administrativos y judiciales, el desconcierto que ello ha suscitado y su efecto más nocivo, a saber: los ciudadanos/as españoles acuden al extranjero para conseguir descendencia por este medio, inscribiendo a los hijos como propios, en contra y en fraude de ley. En el trabajo se abordan varias de las posiciones sobre este asunto en nuestro país: Sociedad Española de Fertilidad, proposición de ley del Grupo Parlamentario Ciudadanos y el Comité de Bioética de España, del que incluye el autor su propio voto particular en cuanto vocal de este Comité. Para finalizar nos propone como solución dos vías. En primer lugar, asegurar que el marco legal actual sea respetado y en segundo orden, que se reforme nuestra legislación con el fin de admitir el recurso a la maternidad subrogada en algunos casos, pues representa valores también positivos, como la solidaridad y el altruismo

In this paper Professor Carlos María Romeo Casabona addresses the legal situation regarding surrogacy in our country, exposing the conflicting positions that this problem generates in administrative and judicial bodies, the confusion that this has caused and its most harmful effect, namely: Spanish citizens go abroad to obtain offspring by this means, inscribing the children as their own, against and in fraud of law. The work addresses several of the positions on this issue in our country: Spanish Fertility Society, proposed law of the Citizens Parliamentary Group and the Bioethics Committee of Spain, which includes the author his own particular vote as a member of this Committee. Finally, he proposes two ways as a solution. First, to ensure that the current legal framework is respected and secondly, that our legislation be reformed in order to admit the use of surrogate motherhood in some cases, since it also represents positive values, such as solidarity and altruism

Surrogacy in Spain and the proposal of a legislative change for its regulation. A global phenomenon in Europe / La maternidad subrogada en España y la propuesta de un cambio legislativo para su regulación. Un fenómeno global en Europa

Reopening the debate on surrogacy, the author presents the legal and ethical situation in Spain and also presents the European Case Law Notes in relation to this practice. At the moment the positions of judges and public administrators collide; As consequences of these disparate criteria, citizens are in the position of going abroad to secure offspring through surrogate motherhood, to subsequently register these children as their own, in contradiction with the law in force in Spain and in other countries. The author finishes the paper with several conclusions that determine the legal aspects involved in the transit of this technique to its accomplishment through contracts, thereby specifying the essential elements (capacity, consent, cause and lawful purpose), the content and the possible manner of gestation human life agreements by surrogacy

El debate de la maternidad subrogada continúa abierto y por ello, la autora analiza los aspectos éticos y legales relativos a esta práctica tanto en España como en otros países europeos. Por el momento, la posición de los jueces es discrepante tanto a nivel nacional como internacional por ello, los ciudadanos españoles, aprovechan este caos para ir a países extranjeros y realizar esta práctica opuesta al derecho español, para luego volver a España con la intención de que se reconozca en el registro civil español, a los nacidos mediante esta técnica, como hijos propios. La autora finaliza el trabajo con unas conclusiones en las que se recogen de una parte, cómo debería regularse la maternidad subrogada si el legislador español considerara un cambio normativo (Contrato en el que se recogieran muchos aspectos: capacidad, consentimiento, filiación, abortos, etc.) o bien, cómo debería actuar el Estado ante estos casos respetando el principio de seguridad jurídica por el que dicha práctica está prohibida

Misconduct in third-party assisted reproduction: an Ethics Committee opinion.

Professionals who discover misconduct or other undisclosed information that would be material to the participation of another party (such as a donor, gestational carrier, intended parent, or lawyer) in an assisted reproductive technology arrangement should encourage disclosure to that party. In some instances, it is ethically permissible for the physician either to disclose material information to the affected party or to decline to provide care. In all cases involving the legal status or rights of the parties, referral to legal professionals is advised. This document replaces the document of the same name, last published in 2014 (Fertil Steril 2014;101:38-42).

Mercado regulado de órganos: el caso de Irán / Regulated market for organs: the case of Iran / Mercat regulat d’òrgans: el cas d'Iran

La escasez de órganos es un problema global constante, aun cuando se presentan diversas alternativas para superar ese problema que genera miles de muertes cada año. El presente artículo analiza los problemas éticos y jurídicos del mercado regulado de órganos, partiendo del modelo de donación recompensada de riñones en vida entre no parientes, implantado en Irán en 1988. Para ello, se realizarán algunos apuntes históricos, pasando por la presentación de los procedimientos y características de dicho modelo, concluyendo con sus principales resultados, aciertos y errores. Al final, adoptando una base empírica como punto de partida, se pretende contribuir con el debate teórico que existe en torno a esa polémica alternativa

Organ shortage is a constant, global problem, even though various alternatives are presented to overcome a problem that generates thousands of deaths every year. This article analyses the ethical and legal issues of the regulated organ market, based on the model of rewarded donation of living kidneys among non-relatives, introduced in Iran in 1988. To this purpose, some historical notes will be made, including a presentation of the procedures and characteristics of the Iranian model, concluding with its main results, successes and errors. In the end, adopting an empirical basis as a starting point, the aim is to contribute to the theoretical debate that exists around this controversial alternative

L'escassetat d'òrgans és un problema global constant, tot i que es presenten diverses alternatives per superar aquest problema que genera milers de morts cada any. El present article analitza els problemes ètics i jurídics del mercat regulat d'òrgans, partint del model de donació recompensada de ronyons en vida entre no parents implantat a Iran en 1988. A tal fi, es realitzaran algunes anotacions històriques, passant per la presentació dels procediments i característiques d'aquest model i concloent amb els seus principals resultats, encerts i errors. Adoptant una base empírica com a punt de partida, el que es pretén és intervenir en el debat teòric que existeix a l’entorn d'aquesta polèmica alternativa

Swaps and Chains and Vouchers, Oh My!: Evaluating How Saving More Lives Impacts the Equitable Allocation of Live Donor Kidneys.

Live kidney donation involves a delicate balance between saving the most lives possible and maintaining a transplant system that is fair to the many thousands of patients on the transplant waiting list. Federal law and regulations require that kidney allocation be equitable, but the pressure to save patients subject to ever-lengthening waiting times for a transplant has been swinging the balance toward optimizing utility at the expense of justice. This article traces the progression of innovations created to make optimum use of a patient's own live donors. It starts with the simplest - direct donation by family members - and ends with voucher donations, a very recent and unique innovation because the donor can donate 20 or more years before the intended recipient is expected to need a kidney. In return for the donation, the intended recipient receives a voucher that can be redeemed for a live kidney when it is needed. Other innovations that are discussed include kidney exchanges and list paired donation, which are used to facilitate donor swaps when donor/recipient pairs have incompatible blood types. The discussion of each new innovation shows how the equity issues build on each other and how, with each new innovation, it becomes progressively harder to find an acceptable balance between utility and justice. The article culminates with an analysis of two recent allocation methods that have the potential to save many additional lives, but also affirmatively harm some patients on the deceased donor waiting list by increasing their waiting time for a life-saving kidney. The article concludes that saving additional lives does not justify harming patients on the waiting list unless that harm can be minimized. It also proposes solutions to minimize the harm so these new innovations can equitably perform their intended function of stimulating additional transplants and extending the lives of many transplant patients.

The attitudes of IVF patients treated in the Czech Republic towards informing children born after gamete donation.

BACKGROUND: In recent decades gamete donation has received growing attention. Data from the Czech National Registry of Assisted Reproduction show that the number of cycles using donated oocytes has been increasing every year. According to Czech law, gamete donation is anonymous. Since 2011, some members of the Czech parliament have repeatedly made requests to revoke the anonymity but anonymity is one of the preconditions for such donation in this country. The aim of this study was to find out how the gamete recipients feel towards informing their child about the circumstances of their conception and their access to the identity of the donor. METHODS: A total of 195 recipients (122 women undergoing treatment - 43 Czechs, 79 foreigners (Western Europe and the USA) and 73 male partners - 28 Czechs, 45 foreigners) participated in this survey. The data were obtained by anonymous questionnaire. RESULTS: A significant difference between the attitude of the future Czech and foreign parents regarding disclosing the mode of conception was found (P = 0.003). The vast majority of Czechs were against disclosure. The foreign recipients were somewhat more divided. Regarding the donor's identity, there was no difference in atttitude between the groups. Recipients rarely consider that the knowledge of the donor's identity will be important for their child. The recipients overall, were convinced that the psychological aspects of parenting are far more important to the child than genetics, and see no reasons for disclosing the donor´s identity. CONCLUSION: While the the foreign recipients were less adamant about non-disclosure, the overall finding was in accord with the current Czech law on anonymity and not in agreement with the proposed abolition. The recipient's attitudes towards disclosing were also culturally determined. The fact that some countries have revised their rules towards open idendity is not a rationale for such change in the Czech Republic.

Kidney Paired Donation and the "Valuable Consideration" Problem: The Experiences of Australia, Canada, and the United States.

As organ donation rates remain unable to meet the needs of individuals waiting for transplants, it is necessary to identify reasons for this shortage and develop solutions to address it. The introduction of kidney paired donation (KPD) programs represents one such innovation that has become a valuable tool in donation systems around the world. Although KPD has been successful in increasing kidney donation and transplantation, there are lingering questions about its legality. Donation through KPD is done in exchange for-and with the expectation of-a reciprocal kidney donation and transplantation. It is this reciprocity that has caused concern about whether KPD complies with existing law. Organ donation systems around the world are almost universally structured to legally prohibit the commercial exchange of organs. Australia, Canada, and the United States have accomplished this goal by prohibiting the exchange of an organ for "valuable consideration," which is a legal term that has not historically been limited to monetary exchange. Whether or not KPD programs violate this legislative prohibition will depend on the specific legislative provision being considered, and the legal system and case law of the particular jurisdiction in question. This article compares the experiences of Australia, Canada, and the United States in determining the legality of KPD and highlights the need for legal clarity and flexibility as donation and transplantation systems continue to evolve.

BARTERING FOR A COMPATIBLE KIDNEY USING YOUR INCOMPATIBLE, LIVE KIDNEY DONOR: LEGAL AND ETHICAL ISSUES RELATED TO KIDNEY CHAINS.

Kidney chains are a recent and novel method of increasing the number of available kidneys for transplantation and have the potential to save thousands of lives. However, because they are novel, kidney chains do not fit neatly within existing legal and ethicalframeworks, raising potential barriers to their full implementation. Kidney chains are an extension of paired kidney donation, which began in the United States in 2000. Paired kidney donations allow kidney patients with willing, but incompatible, donors to swap donors to increase the number of donor/recipient pairs and consequently, the number of transplants. More recently, transplant centers have been using non-simultaneous, extended, altruistic donor ("NEAD") kidney chains--which consist of a sequence of donations by incompatible donors--to further expand the number of donations. This Article fully explains paired kidney donation and kidney chains and focuses on whether NEAD chains are more coercive than traditional kidney donation to a family member or close friend and whether NEAD chains violate the National Organ Transplant Act's prohibition on the transfer of organs for valuable consideration.

Should We Reject Donated Organs on Moral Grounds or Permit Allocation Using Non-Medical Criteria?: A Qualitative Study.

Conditional and directed deceased organ donations occur when donors (or often their next of kin) attempt to influence the allocation of their donated organs. This can include asking that the organs are given to or withheld from certain types of people, or that they are given to specified individuals. Donations of these types have raised ethical concerns, and have been prohibited in many countries, including the UK. In this article we report the findings from a qualitative study involving interviews with potential donors (n = 20), potential recipients (n = 9) and transplant staff (n = 11), and use these results as a springboard for further ethical commentary. We argue that although participants favoured unconditional donation, this preference was grounded in a false distinction between 'medical' and 'non-medical' allocation criteria. Although there are good reasons to maintain organ allocation based primarily upon the existing 'medical' criteria, it may be premature to reject all other potential criteria as being unacceptable. Part of participants' justification for allocating organs using 'medical' criteria was to make the best use of available organs and avoid wasting their potential benefit, but this can also justify accepting conditional donations in some circumstances. We draw a distinction between two types of waste - absolute and relative - and argue that accepting conditional donations may offer a balance between these forms of waste.

Patient pressure: is the tide of cross-border reproductive care beginning to turn?

Two important explanations exist for cross-border reproductive care: restrictive legislation at home and limited access to affordable treatment. Both have recently been subject to patient pressure, favouring domestic and not cross-border services. The oppressive effect of regulation has been best illustrated in Italy, where legislation introduced as Law 40 in 2004 imposed restrictions on embryo freezing and embryo selection. After a decade of legal challenges by patients, the components of Law 40 have now been deemed unconstitutional in Italy. Similarly, a paucity of donor gametes in the UK has left many patients with few options but to seek donors and treatments overseas. Yet new techniques of donor recruitment and a revised allowance of compensation now means that some UK clinics can meet all requirements for donor gametes and patient matching from their own resources.

Italian Constitutional Court removes the prohibition on gamete donation in Italy.

In 2004, The Italian Constitutional Court prohibited treatments involving gamate donation, embryo donation, embryo cryopreservation (except under exceptional circumstances), and the transfer of more than three embryos. Basically three statements were made by the Court: the ban violates a couple's fundamental right to health, to self-determination and to have a child. Here, the consequences of such a decision and the legal challenges that ensued are discussed.

Interests, obligations, and rights in gamete donation: a committee opinion.

This Ethics Committee report outlines the interests, obligations, and rights of the parties involved in gamete donation: both male and female donors who choose to provide gametes for use by others, recipients of donated gametes, and any offspring resulting from gamete donation. This document replaces the document "Interests, obligations, and rights of the donor in gamete donation," last published in 2009 (Fertil Steril 2009;91:22-7).

Increasing access to kidney transplantation in countries with limited resources: the Indian experience with kidney paired donation.

According to the Indian chronic kidney disease registry, in 2010 only 2% of end stage kidney disease patients were managed with kidney transplantation, 37% were managed with dialysis and 61% were treated conservatively without renal replacement therapy. In countries like India, where a well-organized deceased donor kidney transplantation program is not available, living donor kidney transplantation is the major source of organs for kidney transplantation. The most common reason to decline a donor for directed living donation is ABO incompatibility, which eliminates up to one third of the potential living donor pool. Because access to transplantation with human leukocyte antigen (HLA)-desensitization protocols and ABO incompatible transplantation is very limited due to high costs and increased risk of infections from more intense immunosuppression, kidney paired donation (KPD) promises hope to a growing number of end stage kidney disease patients. KPD is a rapidly growing and cost-effective living donor kidney transplantation strategy for patients who are incompatible with their healthy, willing living donor. In principle, KPD is feasible for any centre that performs living donor kidney transplantation. In transplant centres with a large living donor kidney transplantation program KPD does not require extra infrastructure, decreases waiting time, avoids transplant tourism and prevents commercial trafficking. Although KPD is still underutilized in India, it has been performed more frequently in recent times. To substantially increase donor pool and transplant rates, transplant centres should work together towards a national KPD program and frame a uniform acceptable allocation policy.

Aspectos de interés médico-legal de la nueva legislación de trasplantes en España / Medico-legal aspects of the new transplantation legislation in Spain

España ocupa una posición privilegiada a nivel mundial con una de las tasas de donación de fallecidos más alta. El modelo español de donación y trasplante de órganos y tejidos goza de gran prestigio mundial y ha sido objeto de estudio e imitación en distintos países. En el presente trabajo se analizan la evolución legislativa en España hasta la promulgación del reciente Real Decreto 1723/2012 y los aspectos médico-legales más novedosos de este último. En el supuesto de donantes vivos destaca la prestación del consentimiento en el ámbito civil derivado de la modificación del Registro Civil. En los donantes fallecidos se amplía la redacción del diagnóstico de muertes por criterios circulatorios y respiratorios. Se analiza la intervención judicial y del médico forense en el proceso de la donación de órganos, enfatizando la necesidad de protocolarizar la actuación incluyendo la exploración del cadáver(AU)

Spain occupies a privileged position in the world with highest deceased donation rates. The Spanish Model of organ donation and transplantation has a great prestige at the world and has been studied and imitated. This paper discusses legislative developments in Spain until the recent enactment of Royal Decree 1723/2012 and the newest medico-legal aspects. In the case of living donors emphasizes the provision of consent in front of civil court resulting from the change of Civil Registry Office status. In cadaveric organ donation expands diagnostic of circulatory and respiratory death criteria. Judicial intervention and the forensic pathologist rol are analyzed in the process of organ donation, emphasizing the need for improving practical guides including exploration of the body(AU)

El cuerpo muerto y sus partes vivas en la moral católica. Algunas claves históricas de la donación de órganos en España, 1903-1960 / The Dead Body and its Living Parts in The Catholic Ethic. Some Historical Traces for Understanding Organ Transplantation in Spain, 1903-1960

Los primeros antecedentes médico-quirúrgicos de donación y trasplante de partes del cuerpo, dieron lugar a una concepción y vivencia del cuerpo humano como conjunto territorializado y capitalizado de partes reemplazables y funcionales. En los artículos de prensa analizados en este trabajo se estudia cómo, en la primera mitad del siglo XX, los preceptos y normas del régimen franquista y de la doctrina católica, así como la alianza entre hegemonía política, eclesiástica y científica, generaron la construcción cultural de la donación como muestra de caridad y amor cristiano y la percepción del cuerpo como bien común al servicio del prójimo (AU)

The first medical and surgical experiences of donating and transplanting body parts generated a new concept and perception of the human body as a territorialized and capitalized unit, composed of replaceable and functional parts. The press articles analyzed in this research reveal how, during the first half of the XXth century, Franco’s government and the Catholic doctrine, as well as the coalition of political, clerical and scientific hegemony, led to the cultural construction of donation as a proof of charity and Christian love and to an interpretation of the human body as a common good, available to serve others (AU)

They can't have my embryo: the ethics of conditional embryo donation.

There are substantial numbers of frozen embryos in storage that will not be used by those who produced them for their own fertility treatment. One option for such embryos is to donate them to others to use in their fertility treatment. There has been considerable debate about how this process should be organized. In the US, there are embryo adoption programmes that mediate between those relinquishing embryos and potential recipients. This is a form of conditional embryo donation, where the relinquishing couple can choose the recipient of their embryo. This article examines the ethical debate over conditional embryo donation for family building and explores the question of whether those who have unused frozen embryos should be able to determine who receives their embryos. The main objections to conditional embryo donation are examined: first, the embryo is not a person and therefore such concern over the placement of an embryo is unwarranted; secondly, potential donors might impose morally problematic conditions on who should receive their embryo; and thirdly, there are practical difficulties regarding organizational arrangements and the associated costs involved. It will be concluded that these objections can be countered and that if people wish to donate and receive embryos in this way there is no ethical objection to them doing so.