RESUMO
BACKGROUND: Patients with genetic optic atrophies must navigate all stages of life with their visual impairment, including the important milestone of family planning. Advances in genetic testing now allows physicians and affected families to consider medical help with the aim of preventing blindness through preconception, preimplantation, and perinatal methods. METHODS: This case series presents 4 patients with different genetic optic atrophies (Leber hereditary optic neuropathy [LHON], autosomal dominant optic atrophy, Wolfram syndrome, and papillorenal syndrome) who were followed by the Neuro-Ophthalmology Unit at a tertiary medical center between 2010 and 2023 and were of child-bearing age. The aim of this study was to increase understanding in family planning options for patients with optic atrophies, raise awareness of the solutions available, and provide guidance for clinicians to support their patients. RESULTS: Advances in medicine, genetics, and medical technology allow multidisciplinary teams to assist patients in fulfilling their desire for a genetically healthy offspring. Customized solutions can be designed to meet the specific challenges posed by each type of genetic optic atrophy. The solutions proposed in this series are based on genetic testing done in the parents, which then allows to plan medical and genetic intervention individually. The solutions opted for in this series range from the decision to not have another child until PGD (Preimplantation genetic diagnosis). CONCLUSION: We describe how genetic advancements have made it possible for patients with the 4 most common hereditary optic atrophies to fulfill their wish to have children without visually threatening genetic mutations. We also review the recent literature on the penetrance of optic atrophy in OA-mutation carriers and raise 2 significant ethical considerations: the reduction of a future life to a non-life-threatening impairment and that of public expenditure for non-life-threatening conditions.
RESUMO
Living kidney donations in Israel come from 2 sources: family members and individuals who volunteer to donate their kidney to patients with whom they do not have personal acquaintance. We refer to the first group as directed living donors (DLDs) and the second as semidirected living donors (SDLDs). The incidence of SDLD in Israel is â¼60%, the highest in the world. We introduce results of a survey among 749 living donors (349 SDLDs and 400 DLDs). Our data illustrate the sociodemographic profile of the 2 groups and their answers to a series of questions regarding spirituality and social tolerance. We find SDLDs to be sectorial: they are mainly married middle-class religious men who reside in small communities. However, we found no significant difference between SDLDs and DLDs in their social tolerance. Both groups ranked high and expressed tolerance toward different social groups. Semidirected living donation enables donors to express general preferences as to the sociodemographic features of their respected recipients. This stirs a heated debate on the ethics of semidirected living donation. Our study discloses a comprehensive picture of the profile and attitudes of SDLDs in Israel, which adds valuable data to the ongoing debate on the legitimacy of semidirected living donation.
RESUMO
Figuring out what pushes individuals to become organ donors has become the holy grail of social scientists interested in transplantations. In this paper I concentrate on solidarity as a determinant of organ donation and examine it through the history of organ donation in Israel. By following the history of transplantation policies since 1968 and examining them in relation to different types of solidarities, this paper leads to a nuanced understanding of the ties between solidarity and health policy. Attempts to foster an all-encompassing consensus on the definition of brain death yielded the Transplantation and the Brain-Respiratory Death Laws of 2008. It was hoped that a wide "civic solidarity" would render Israel self-sufficient in its organ economy. However, the failure of the law led to the breakdown of civic solidarity in organ donation. As a result, initiatives such as the priority policy and non-directed living organ donations, developed out of a narrower conception of solidarity. Juxtaposing these initiatives sheds light on macro level processes for policy makers and suggests solidarity as a key bioethical concept to understand organ donation policies.
Assuntos
Transplante de Órgãos , Obtenção de Tecidos e Órgãos , Humanos , Israel , Doadores de Tecidos , Organizações , Morte Encefálica , Altruísmo , Doadores VivosRESUMO
Stigma is associated with harmful health outcomes, and it fuels social and health inequalities. It can undermine social cohesion and encourage social exclusion of groups, which may contribute to secrecy about disease symptoms, avoidance of disease testing and vaccination, and further spread of a contagious illness. Stigmatization is a social process set to exclude those who are perceived to be a potential source of disease and may pose a threat to effective interpersonal and social relationships. In this qualitative study, we delved into the stigmatization experiences of twenty COVID-19 recovered patients during the COVID-19 first wave, using in-depth semi-structured interviews conducted during November 2020. Using thematic analysis, we found that the process of stigmatization was all-encompassing, from the stage of diagnosis throughout the duration of the disease and the recovery phases. On the basis of the data, we hypothesized that stigma is a significant public health concern, and effective and comprehensive interventions are needed to counteract the damaging and insidious effects during infectious disease pandemics such as COVID-19, and reduce infectious disease-related stigma. Interventions should address provision of emotional support frameworks for the victims of stigmatization and discrimination that accompany the COVID-19 pandemic and future pandemics. This study was conducted in the early days of the COVID-19 pandemic, when uncertainty about the disease was high and fear of contamination fueled high levels of stigmatization against those who became ill with Covid-19.
RESUMO
Even though various countries' overall policy for dealing with the pandemic was not particularly innovative, the pandemic was perceived as a unique crisis. "COVID exceptionalism" has seemed to create "a new normal" that we all need to "learn to live with". The main change in perspective, while not new for public health experts, is that health exists within a social and political context. While public health ethics has turned out to be an important discipline, there is a long way to its wider acceptance. Entering the "new normal" calls for a wider embrace of public health approaches to ethics. The renewed emphasis on understanding health as a social concept encompasses central normative implications in relation to dealing with COVID-19 and in relation to dealing with other global crises, chiefly climate change. We argue that entering the era of "the new normal" in healthcare requires a nuanced understanding of the relationship between the individual and society and demands the formulation of a new system of bioethics focused on the concept of solidarity as a central value in public health. Such a concept should refer to the fact that in the "new normal", risks require new social and political formations of standing together in confronting risks that cross national, cultural, and identity borders. Forming and expanding solidarity in health and healthcare, we argue, is the main normative challenge for public health today.
Assuntos
Bioética , COVID-19 , COVID-19/epidemiologia , Humanos , Princípios Morais , Pandemias , Saúde PúblicaRESUMO
While bioethicist Arthur Caplan claims that "The Nazi analogy is equivalent to dropping a nuclear bomb in ethical battles about science and medicine", we claim that such total exclusion of this analogy is equally problematic. Our analysis builds on Roberto Esposito's conceptualization of immunitas and communitas as key elements of biopolitics. Within public health theories and practices there is an inherent tension between exclusion (immunitas) and inclusion (communitas) forces. Taking the immunitas logic to the extreme, as National Socialist medicine did in the name of securing the German race, is a constant danger that needs to be taken seriously into consideration when discussing public health policies. The tension between the silencing of the Holocaust in bioethical debates on one side, and the persistent use of National Socialist medicine metaphors, on the other hand, is the focus of this paper. By delving into the meanings and the implications of this two-edged discourse, we argue that comparing post-war bioethics with pre-war medical practices from a biopolitical perspective has the potential to depict a more nuanced account of continuities and discontinuities in bioethics.
Assuntos
Bioética , Holocausto , Humanos , Israel , Socialismo Nacional , Saúde PúblicaRESUMO
In 2013 the Israeli Ministry of Health appointed a public committee to examine the policy of placing an age limitation on candidates listed for organ transplantation. The committee rejected the use of an age limit criterion for listing candidates for transplantation and recommended to abolish it. However, opinions differed regarding the use of recipients' age in shaping a fair organ allocation policy. The committee's recommendations were adopted and put into force as of April 2014. This article unfolds the committee deliberations on accommodating values of formal equality for optimising the use of organ transplantation.
Assuntos
Política de Saúde/legislação & jurisprudência , Acessibilidade aos Serviços de Saúde/legislação & jurisprudência , Transplante de Órgãos/legislação & jurisprudência , Doadores de Tecidos/provisão & distribuição , Obtenção de Tecidos e Órgãos/legislação & jurisprudência , Transplantados/legislação & jurisprudência , Adolescente , Adulto , Fatores Etários , Idoso , Acessibilidade aos Serviços de Saúde/ética , Humanos , Israel , Pessoa de Meia-Idade , Transplante de Órgãos/efeitos adversos , Transplante de Órgãos/ética , Formulação de Políticas , Fatores de Risco , Obtenção de Tecidos e Órgãos/ética , Adulto JovemRESUMO
BACKGROUND: During the summer of 2013, after samples of poliomyelitis virus were found in sewage, Israel launched an intensive national oral polio vaccine (OPV) campaign. The clinical objective of the campaign was rather clear. With not a single case of infantile paralysis and with a population already highly protected with IPV (a dead version of the vaccine), the goal was to foster collective immunity so that risk populations could also be protected. This, however, entailed a rather unusual issue: how to persuade parents whose children already received an IPV to re-vaccinate their children, now with a live yet attenuated version of the virus that was excluded from the national vaccination program in 2004. The challenge therefore was a call for social solidarity - asking parents to vaccinate their children mainly for the sake of protecting unknown at risk populations and to take part in the larger global goals of the polio eradication program. This challenge stands at the core of our investigation. We see the OPV campaign of summer 2013 as a good case study of the tension between individualism and social solidarity in seeking the cooperation of the public. METHODS: We draw on a qualitative study that included participant observation, document reviews and interviews with policy-makers, parents, journalists, public health experts and community leaders. These data were analyzed in order to unravel the ways in which self-interest, community and solidarity were conceived by different agents during the vaccination campaign. RESULTS: The family as a metaphor for social solidarity was the main discursive item in the public campaign. Tensions, dissonances and inconsistencies were found between different registers and agencies as to what is at stake and what is required. CONCLUSIONS: We discuss the ethical and social implications of our findings in order to better understand how persuasion was used in the current case and for its future role in similar events, within and outside Israel, when global efforts to eradicate polio are ongoing.
RESUMO
The supply of human organs for transplantation is undergoing a dramatic transformation. Using data from 30 countries for the years 1995-2007, this paper suggests that organ supply today is more dependent on direct donations than on the collective organ pool. This trend is analyzed by studying different modes of altruism: "generalized altruism" relates to the procurement of organs through a one-for-all collectivized system of donations whereas "restricted altruism" relates to one-to-one donations with organs considered personal gifts. The data suggest that transplants are becoming less and less social goods and more and more personal gifts. This trend is documented and discussed in light of the linkage that social scientists hypothesize between altruism and social solidarity. Whereas altruism is conceived as generating social solidarity, the rise in direct organ donations restricts the effect of altruism to one-to-one interactions rather than one-for-all giving.
Assuntos
Altruísmo , Obtenção de Tecidos e Órgãos/métodos , Obtenção de Tecidos e Órgãos/tendências , Política de Saúde , Humanos , Valores Sociais , Estados UnidosRESUMO
The Israeli experience discloses the relationship between the traditional altruistic basis of organ donation and the new alternatives based on a utilitarian conception of unrelated compensated donation. Although organ trafficking in Israel was dramatically intensified, cadaveric and living-related donations decreased. Reforms in living donations, such as evaluation committees for unrelated directed donors, were insignificant in terms of meeting the demand of patients and reducing the volume of trafficking. It is our contention that battling organ trafficking should provide patients with a realistic alternative for kidney donations. Our model of regulated nondirect paid donations is planned to legalize significant compensation for the unrelated donors drawing individuals from falling into the trap of organ traders. This program, together with uncompromised penalties, would hopefully eradicate organ trafficking.