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.

An Organ for My Child: Public Appeals for Limited Resources.

The case of Jamie Fiske and subsequent public appeals for particular children by President Ronald Reagan represent classic cases in pediatric bioethics in which parents or others publicly appealed for a donor organ for a particular child. These raise questions about the appropriate boundaries for public appeals for a limited resource for a particular child and how the press and medical community should respond to such appeals. Public appeals by parents to advocate for their child to receive a limited resource above others promote rationing by morally irrelevant factors and shift the public focus from the national shortage of organs for transplant to the needs of a particular child. Yet these appeals are understandable and will likely continue. Recognizing this, we consider appropriate responses by the media, transplant community, hospitals, and individual clinicians.

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.

Responsible use of organoids in precision medicine: the need for active participant involvement.

Organoids are three-dimensional multicellular structures grown in vitro from stem cells and which recapitulate some organ function. They are derivatives of living tissue that can be stored in biobanks for a multitude of research purposes. Biobank research on organoids derived from patients is highly promising for precision medicine, which aims to target treatment to individual patients. The dominant approach for protecting the interests of biobank participants emphasizes broad consent in combination with privacy protection and ex ante (predictive) ethics review. In this paradigm, participants are positioned as passive donors; however, organoid biobanking for precision medicine purposes raises challenges that we believe cannot be adequately addressed without more ongoing involvement of patient-participants. In this Spotlight, we argue why a shift from passive donation towards more active involvement is particularly crucial for biobank research on organoids aimed at precision medicine, and suggest some approaches appropriate to this context.

Producing Parenthood: Islamic Bioethical Perspectives & Normative Implications.

Biomedicine has opened up new possibilities for parenthood. Once resigned to remaining childless or pursuing adoption, infertile couples can now pursue options such as gamete donation, in-vitro fertilization, and uterine transplantation, as well as surrogacy. Muslim thinkers have viewed these strategies with both promise and caution given new types of kinship and parenthood result. By drawing upon leading medical fiqh academy resolutions this paper critically analyses Islamic normative views on the production of parenthood. We start with an overview of the Sunni rulings on gamete donation, gestational surrogacy and uterus transplantation, and the rationale and scriptural sources that undergird these moral assessments. Next, we discuss the contested relational bonds in light of larger discussions on genetics and the preservation of lineage. Finally, we comment on how scientific data, social imaginaries, and empirical gaps impact Islamic normativity regarding the production of parenthood so as to inform more holistic Islamic bioethical assessments.

The ethics of the Global Kidney Exchange programme.

The Global Kidney Exchange (GKE) programme seeks to facilitate kidney transplants by matching donor-recipient pairs across high-income, medium-income, and low-income countries. The GKE programme pays the medical expenses of people in medium-income and low-income countries, thus enabling them to receive a kidney transplantation they otherwise could not afford. In doing so, the programme increases the global donor pool, and so benefits people in high-income countries by improving their chances of finding a donor match. Nevertheless, the GKE has been accused of being a form of organ trafficking, exploiting the poor, and involving coercion and commodification of donors. We refute these claims, arguing that the GKE promotes global justice and reduces the potential for people in need of kidneys in low-income and medium-income countries to be exploited. Misguided objections should not be allowed to prevent the GKE from realising its potential to reduce suffering and save the lives of rich and poor patients alike.

Deceased Donor-initiated Chains: First Report of a Successful Deliberate Case and Its Ethical Implications.

BACKGROUND: It has been suggested that deceased donor kidneys could be used to initiate chains of living donor kidney paired donation, but the potential gains of this practice need to be quantified and the ethical implications must be addressed before it can be implemented. METHODS: The gain of implementing deceased donor-initiated chains was measured with an algorithm, using retrospective data on the pool of incompatible donor/recipient pairs, at a single center. The allocation rules for chain-ending kidneys and the characteristics and quality of the chain-initiating kidney are described. RESULTS: The benefit quantification process showed that, with a pool of 69 kidneys from deceased donors and 16 pairs enrolled in the kidney paired donation program, it was possible to transplant 8 of 16 recipients (50%) over a period of 3 years. After obtaining the approval of the Veneto Regional Authority's Bioethical Committee and the revision of the Italian National Transplant Center's allocation policies, the first successful case was completed. For the recipient (male, aged 53 y), who entered the program for a chain-initiating kidney with a Kidney Donor Risk Index of 0.61 and a Kidney Donor Profile Index of 3%, the waiting time was 4 days. His willing donor (female, aged 53 y) with a Living Kidney Donor Profile Index of 2, donated 2 days later to a chain-ending recipient (male, aged 47 y) who had been on dialysis for 5 years. CONCLUSIONS: This is the first report of a successfully completed, deliberate deceased donor-initiated chain, which was made possible after a thorough assessment of the ethical issues and the impact of allocation policies. This article includes a preliminary efficacy assessment and describes the development of a dedicated algorithm.

Why does the UK need a Human Taphonomy Facility?

Human Taphonomy Facilities (HTFs) are outdoor laboratories where scientific research is carried out on donated human cadavers in order to understand how human decomposition progresses in a variety of conditions. There are currently eight such facilities in the USA, one in Australia and one on mainland Europe. Forensic scientists in the UK have started to ask the question 'Does the UK need a Human Taphonomy Facility?'. A review of the literature produced by the existing HTFs, as well as published opinion and commentaries about these facilities and the feasibility of one in the UK has been undertaken. The existing arguments for and against the establishment of a Human Taphonomy Facility in the UK have been examined. Given recent media interest in the possibility of the establishment of a Human Taphonomy Facility in the UK, and the surrounding controversy, it is important to evaluate the potential benefit or harm of the creation of such a facility to Society and the scientific community.

Deceased-directed donation: Considering the ethical permissibility in a multicultural setting.

This paper explores the ethics of deceased-directed donation (DDD) and brings a unique perspective to this issue-the relevance of providing family-centered care and culturally sensitive care to deceased donors, potential recipients, and their families. The significance of providing family-centered care is becoming increasingly prevalent, specifically in pediatric healthcare settings. Therefore, this topic is especially relevant to those working with and interested in pediatrics. As the world is becoming more diverse with globalization, assessing the cultural aspect of the ethics of DDD is increasingly salient. We provide a brief overview of DDD across the globe, review prominent arguments both for and against DDD, consider family-centered and culturally specific considerations, and offer considerations for the development of a policy or guideline. We determine that the practice of DDD is ethically defensible in certain circumstances and congruent with providing both family-centered and culturally sensitive care. Our analysis is relevant to any country with a diverse population and any healthcare provider or institution that operates under a framework of family-centered care, such as those in pediatric hospitals.

Ethical problems with ethnic matching in gamete donation.

Assisted reproduction using donor gametes is a procedure that allows those who are unable to produce their own gametes to achieve gestational parenthood. Where conception is achieved using donor sperm, the child lacks a genetic link to the intended father. Where it is achieved using a donor egg, the child lacks a genetic link to the intended mother. To address this lack of genetic kinship, some fertility clinics engage in the practice of matching the ethnicity of the gamete donor to that of the recipient parent. The intended result is for the child to have the phenotypic characteristics of the recipient parents. This paper examines the philosophical and ethical problems raised by the policy of ethnic matching in gamete donation. I consider arguments for the provision of ethnic matching based on maximising physical resemblance and fostering ethnic identity development. I then consider an argument against ethnic matching based on the charge of racialism. I conclude that while the practice of ethnic matching in gamete donation could promote positive ethnic identity development in donor-conceived children from historically subjugated ethnic minorities, it also risks endorsing the problematic societal attitudes and assumptions regarding ethnicity that enabled such subjugation in the first place.

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).

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.

Empathy, social media, and directed altruistic living organ donation.

In this article we explore some of the ethical dimensions of using social media to increase the number of living kidney donors. Social media provides a platform for changing non-identifiable 'statistical victims' into 'real people' with whom we can identify and feel empathy: the so-called 'identifiable victim effect', which prompts charitable action. We examine three approaches to promoting kidney donation using social media which could take advantages of the identifiable victim effect: (a) institutionally organized campaigns based on historical cases aimed at promoting non-directed altruistic donation; (b) personal case-based campaigns organized by individuals aimed at promoting themselves/or someone with whom they are in a relationship as a recipient of directed donation; (c) institutionally organized personal case-based campaigns aimed at promoting specific recipients for directed donation. We will highlight the key ethical issues raised by these approaches, and will argue that the third option, despite raising ethical concerns, is preferable to the other two.

A liver for a kidney: Ethics of trans-organ paired exchange.

Living donation provides important access to organ transplantation, which is the optimal therapy for patients with end-stage liver or kidney failure. Paired exchanges have facilitated thousands of kidney transplants and enable transplantation when the donor and recipient are incompatible. However, frequently willing and otherwise healthy donors have contraindications to the donation of the organ that their recipient needs. Trans-organ paired exchanges would enable a donor associated with a kidney recipient to donate a lobe of liver and a donor associated with a liver recipient to donate a kidney. This article explores some of the ethical concerns that trans-organ exchange might encounter including unbalanced donor risks, the validity of informed consent, and effects on deceased organ donation.

Liver paired exchange: Can the liver emulate the kidney?

Kidney paired exchange (KPE) constitutes 12% of all living donor kidney transplantations (LDKTs) in the United States. The success of KPE programs has prompted many in the liver transplant community to consider the possibility of liver paired exchange (LPE). Though the idea seems promising, the application has been limited to a handful of centers in Asia. In this article, we consider the indications, logistical issues, and ethics for establishing a LPE program in the United States with reference to the principles and advances developed from experience with KPE. Liver Transplantation 24 677-686 2018 AASLD.

Who gets the gametes? An argument for a points system for fertility patients.

This paper argues that the convention of allocating donated gametes on a 'first come, first served' basis should be replaced with an allocation system that takes into account more morally relevant criteria than waiting time. This conclusion was developed using an empirical bioethics methodology, which involved a study of the views of 18 staff members from seven U.K. fertility clinics, and 20 academics, policy-makers, representatives of patient groups, and other relevant professionals, on the allocation of donated sperm and eggs. Against these views, we consider some nuanced ways of including criteria in a points allocation system. We argue that such a system is more ethically robust than 'first come, first served', but we acknowledge that our results suggest that a points system will meet with resistance from those working in the field. We conclude that criteria such as a patient's age, potentially damaging substance use, and parental status should be used to allocate points and determine which patients receive treatment and in what order. These and other factors should be applied according to how they bear on considerations like child welfare, patient welfare, and the effectiveness of the proposed treatment.

From Directed Donation to Kidney Sale: Does the Argument Hold Up?

The UCLA Medical Center has initiated a "voucher program" under which a person who donated a kidney would receive a voucher that she could provide to someone of her choosing who could then use it to move to the top of the renal transplantation waiting list. If the use of such vouchers as incentives for donors is morally permissible, then cash payments for kidneys are also morally permissible. But, that argument faces five objections. First, there are some goods whose nature allows them to be exchanged for similar goods but renders them monetarily inalienable. Hence, kidneys might be exchanged for kidneys but not sold for cash. Second, voucher programs respect donor autonomy, whereas the offer of cash payments does not. Third, the burden of proof lies with the advocates of cash payments for kidneys to show that their benefits would outweigh the costs of their legalization. Fourth, allowing cash payments for kidneys would stifle medical innovation. Fifth, allowing cash payments for kidneys would result in these organs being used as collateral to secure loans-and that this would disadvantage potential borrowers who did not want to risk their kidneys in this way. This paper will rebut all these objections.

Banking on Living Kidney Donors-A New Way to Facilitate Donation without Compromising on Ethical Values.

Public surveys conducted in many countries report widespread willingness of individuals to donate a kidney while alive to a family member or close friend, yet thousands suffer and many die each year while waiting for a kidney transplant. Advocates of financial incentive programs or "regulated markets" in kidneys present the problem of the kidney shortage as one of insufficient public motivation to donate, arguing that incentives will increase the number of donors. Others believe the solutions lie-at least in part-in facilitating so-called "altruistic donation;" harnessing the willingness of relatives and friends to donate by addressing the many barriers which serve as disincentives to living donation. Strategies designed to minimize financial barriers to donation and the use of paired kidney exchange programs are increasingly enabling donation, and now, an innovative program designed to address what has been termed "chronologically incompatible donation" is being piloted at the University of California, Los Angeles, and elsewhere in the United States. In this program, a person whose kidney is not currently required for transplantation in a specific recipient may instead donate to the paired exchange program; in return, a commitment is made to the specified recipient that priority access for a living-donor transplant in a paired exchange program will be offered when or if the need arises in the future. We address here potential ethical concerns related to this form of organ "banking" from living donors, and argue that it offers significant benefits without undermining the well-established ethical principles and values currently underpinning living donation programs.

The Body as Gift, Commodity, or Something in Between: Ethical Implications of Advanced Kidney Donation.

An innovative program recently initiated at the University of California, Los Angeles (UCLA) Medical Center allows people to donate a kidney in exchange for a voucher that a loved one can redeem for a kidney if and when needed. As a relatively new practice, the ethical implications of advanced kidney donation have not yet been widely discussed. This paper reflects on some of the bioethical issues at stake in this new donation program, as well as some broader philosophical issues related to the meaning and moral salience of commodification. I first consider whether the literature on commercial markets in organs--a longstanding topic of bioethical debate--can meaningfully inform ethical analysis of kidney voucher programs. Specifically, I consider whether and to what extent common objections to the exchange of kidneys for cash also apply to the exchange of kidneys for "kidney vouchers." Second, I argue that the contrast between the ethical issues raised by these two practices highlights the need to understand commodification as existing on a continuum, with different degrees of commodification giving rise to different ethical issues. Doing so can help sharpen our understanding of commodification as a moral concept, as well as its relevance to broader debates about the moral limits of markets.

Kidney Vouchers and Inequity in Transplantation.

This article probes the voucher program from an ethical perspective. It focuses mainly on an issue of inequity. A disparity exists in US kidney transplantation. Although African-Americans suffer far higher rates of ESRD than whites, African-Americans are much less likely than whites to get a transplant (Ilori et al., 2015, 1). The article explores the voucher program in light of this disparity. It motivates the view that, at least in the short term, more whites than African-Americans are likely to take advantage of the voucher program. The program is, thus, likely to increase the gap in transplantation rates between the two groups. If this is correct, what impact does it have on the moral acceptability of the program?