Malleable Morality: Re-Shaping Moral Judgments in Health Policymaking.

When confronted with moral dilemmas related to health, governments frequently turn to "moral experts," such as bioethicists and moral philosophers, for guidance and advice. They commonly assume that these experts' moral judgments are primarily a product of deliberate reasoning. The article challenges this assumption, arguing that experts' moral judgments may instead be primarily a product of moral intuitions which, often subconsciously, respond to the social setting.

ER22/23EK AND TTH111I POLYMORPHIC VARIANTS IN THE GLUCOCORTICOID RECEPTOR GENE IN PATIENTS WITH BRONCHIAL ASTHMA.

OBJECTIVE: Aim: The objective of the study was to evaluate the frequency of the ER22/23EK and Tth111I polymorphic variants in the glucocorticoid receptor (GR) gene in patients with BA and to assess the risk of BA development with regard to these polymorphisms. PATIENTS AND METHODS: Materials and Methods: We examined 553 BA patients and 95 apparently healthy individuals. BA was diagnosed according to the 2016 GINA recommendations and its later versions. The study was approved by the Bioethics Committee of the Medical Institute of Sumy State University. The ER22/23EK (rs 6189/6190) and Tth111I (rs10052957) polymorphisms in the GR gene were determined using polymerase chain reaction-restriction fragment length polymorphism analysis. Statistical analysis of obtained results was performed using SPSS-17 program. RESULTS: Results: The obtained distribution of genotypes for the ER22/23EK and Tth111I polymorphisms in the GR gene corresponded to the Hardy-Weinberg expectations (p > 0.05). We revealed no significant difference in the distribution of alleles and genotypes for the ER22/23EK polymorphism in the GR gene in patients with asthma and apparently healthy individuals (χ2 = 4.14; p = 0.126); apart from that, we found no statistically significant association with BA risk in any model of inheritance. A statistically significant difference was observed in the distribution of genotypes for the Tth111I polymorphism in the GR gene in patients with asthma and apparently healthy individuals (χ2 = 6.278; p = 0.043). BA risk was 2.69 times higher in the carriers of TT genotype for the Tth111I polymorphism in the GR gene vs. major allele carriers. No gender-specific difference was observed in the distribution of genotypes and alleles for the ER22/23EK and Tth111I polymorphisms in the GR gene. CONCLUSION: Conclusions: We found no gender-specific difference in the distribution of alleles and genotypes for the ER22/23EK and Tth111I polymorphisms in the GR gene; no difference in the distribution of alleles and genotypes for the ER22/23EK polymorphism in the GR gene in patients with asthma and apparently healthy individuals; and no statistically significant association with BA risk. A statistically significant difference was observed in the distribution of genotypes for the Tth111I polymorphism in the GR gene in patients with asthma and apparently healthy individuals; also, BA risk was 2.69 times higher in the minor allele homozygous patients vs. major allele carriers.

Daniel Callahan's Decade of Doubt.

Daniel Callahan died on July 16, 2019, just short of his 89th birthday. In the years since, we have seen the overturning of abortion rights, a concern central to his scholarship and musings about the place of religion in American civic life. Callahan's journey from lay Catholic journalist and commentator at Commonweal to a co-founder of the Hastings Center, during his decade of doubt, is especially relevant today as America revisits established precedent governing a woman's right to choose. His life-long struggle with faith and the secularization of bioethics is a story worth telling, as it may foster dialogue across a divide between religious and laical thinkers that has fractured our political discourse. We recall Callahan's misgivings about the marginalization of religious perspectives in public life; he sought not the denial of complexity nor of difference in views, but rather the importance of free and honest debate around deeply held beliefs, contextualized in the realities of the contemporary world. Callahan's ambivalence about his faith remains a part of the fabric of American life, a story that Callahan chronicled to our collective benefit for over a half-century.

Chapitre 7. Un regard de généticien.

Examined through the eyes of the geneticist, the modifications of the bioethics law seem relatively modest with regard to the supervision of the practices of his discipline. The introduction of rules concerning the use of algorithms in medical practice is the truly new point. It seemed beneficial to take into account “the interference of thinking machines” in medical decision-making and to initiate the outlines of a framework. We will debate the proposals and terms. Precisions made to the obligation to inform relatives of the existence of a genetic anomaly are defined around the concept of solidarity. Without neglecting this latter, we will recall other determinants, the complexity and the issues underlying the delivery of predictive genetic information as well as the risks that informed persons may incur. It seems appropriate to also consider the ethical tensions that can impose themselves on the physicians involved in the mandatory process of information..

Chapitre 1. Présentation de la nouvelle loi en contexte.

The 2021 bioethics law intends mainly to respond to expectations from society, mainly from minorities regarding procreation and little relayed by the “general states of bioethics”. It therefore looks bioethics, at the legislative level, not as a set of safeguards against the evolution of technologicals resources, but as the granting of new rights using these technologies. Beyond procreation, the law also loosens the constraints on the research and organ donation or genetic information. In so doing, it determines new balances between subjective rights and protective orders, which the Constitutional Council did not wish to examine.

Chapitre 13. D'un corps l'autre.

The evolution of bioethics laws reflects, in part, the evolution of French society’s view of the nature of the human body. In recent years, debates have focused on the consequences, in terms of filiation, of the 2013 law opening marriage to same-sex couples. In this particular context, this contribution examines how the development of stem cell research is disturbing our view of the very concept of the ordering of the human body. This concept is indeed central because it allows us to put ethics and democratic praxis into perspective.

Chapitre 11. Regard philosophique sur le don d'organes du vivant et les particularités du don croisé.

Organ donation confronts us with the reality of illness, with the horizon of death and with a material effectivity of corporeality, and at the same time it introduces the possibility of a gift of oneself going as far as the materiality of the organ. Such an approach associating donation and access to the body reality leads us to question the relation of the subject to others and to himself on the moral level: up to what point can one give a constitutive element of one’s body in order to care for another? Can the wish to save others surpass the search for individual preservation? Can organ donation be extracted from an economic system? We propose first of all to bring together conceptual elements for thinking about living organ donation, before focusing more specifically on the implications of cross-donation according to the new provisions of the 2021 Bioethics Law.

Chapitre 14. Le nouveau droit de l'assistance médicale à la procréation. Entre démédicalisation et stigmatisation : les tâtonnements du principe d'égalité.

The law of bioethics of 2 August 2021 is readily presented as enforcing the “medically-assisted procreation (MAP) for everyone”. It is true that opening up the MAP to female couples and single women made the law depart from the former legal framework which was based on a strong medicalization of this assisted procreation. This shift seems to be justified by the legislator’s intent to ensure equal rights when it comes to parental projects. Nevertheless, this “new” MAP right keeps facing differences in the treatment of applicants based on their gender or sexual orientation.

Chapitre 3. À propos de la loi de bioéthique : processus législatif et démocratisation.

To what extent does the revised law transcribe new orientations and how will they be applied to take into account the human dimension of those to whom they are addressed? This therefore leads us to meet three perspectives. The first concerns the relationship that man has with science and technology. The second look, to which the reflection on limits leads us, is that of the law, this tracer of borders, which obliges us to exercise our freedom in a responsible way. A third look invites us to define our relationship to the World, as it is and as we are and not just as we want to appear by controlling it. I have, for my part, the certainty that this process of questioning cannot claim to give us in the moment all the answers that we expect from it but that we must have the patience to see how the standard will marry with the present realities. and to come.

Conclusions et ouverture : dialogue intergénérationnel.

As the bioethics law has just been voted, several actors during this academic conference have examined the paradigm shift introduced by this resolutely liberal law from their respective perspectives. Using a reading grid inherited from Pascal’s orders, the different dimensions of moral, political, legal, and scientific discourse are used as a reference to evaluate an often highly contrasting discourse. The evolution of the paradigm from bioethics law to zoethics law, in search of social legitimacy and of a response to individual desires, constitutes a turning point in the revision of bioethics laws. Under these conditions, does bioethics law does not lose its universal purpose?

Chapitre 2. La loi de bioéthique : un enjeu de démocratie sanitaire.

The law of bioethics defines the judicial framework for governing medical practices and research involving the human body and the embryo. Does any scientific or technologic innovation warrant a modification of the law? To respond to this question, a preliminary reflection is necessary so as to define new equilibria which respect ethical principles, the promotion of solidarity with respect for the autonomy of each person.The CCNE is charged with organizing public debate, in the form of a general assembly of bioethics, with the support of regional spaces of ethical reflection. This extensive experience took place from January to June 2018 and lead to several lessons, notably the strong expression of a need for information and a critical vision of the notion of medical progress.Then, the parliamentary instruction and hearings that accompanied it, from 24 July 2019 to 2 August 2021, contributed developments to the initial bill. Thus, the periodic review of the law of bioethics is now based on citizen participation in the construction of legislative arbitration, demonstrating the French way of social participation.

Chapitre 4. PMA : la nouvelle donne. La révision de la loi de bioéthique en 2021.

The new version of the bioethics law adopted in 2021 is distinguished first and foremost by its openness. It legitimises access to medically assisted procreation for lesbian couples and single women. It allows young adults born through gamete donation to know their origins. It allows any woman to freeze her oocytes with a view to a subsequent pregnancy, without any medical condition. At the same time, the new law is characterised by its moderation. These new freedoms do not challenge the primacy of conjugal parenthood. Multiple parenthood is not on the agenda. The law establishes a differentiated filiation between heterosexual parentage and homoparentage. It confirms the absolute ban on surrogate motherhood. Between authorisations and prohibitions, the fourth bioethics law promotes a tempered liberalism.

Chapitre 6. Le déploiement de la médecine génomique : la place de l'autonomie du patient dans la réutilisation des données génétiques au profit de la recherche.

Genetic research today is largely based on the reuse of data from care for the benefit of research. This evolution of practices, which involves an increasingly marked communication between care and research, questions the place given to the patient seen as a potential participant in research. In order to promote the circulation of genetic data generated and to allow their reuse for the benefit of different research, the French legislator reaffirmed the use of the opt-out mechanism (“non-opposition”) in the last bioethics law of the 2 August 2021. If the reasons that led the legislator to make this shift from the concept of consent to the opt-out mechanism are legitimate, the conditions of implementation of this mechanism seem to need to be questioned in order to ensure the effectivity of the balance sought by the legislator between preserving the autonomy of the individual with regard to the sharing of his/her genetic data and encouraging the development of medical knowledge; one should not be to the detriment of the other.

Chapitre 15. L'accès aux origines personnelles.

Law n° 2021-1017 of August 2nd. 2021 allows children born of assisted reproduction with a third party donor to have access, as of their majority, to non-identifying data and the identity of this third party. Without calling into question the principle of anonymity, it enshrines the right of access to origins. The reasons for this development are to be found in the evolution of European law, rather than in a logical evolution of French bioethics law. However, such an enshrinement is not without difficulties, both in terms of the concrete and technical implementation of this access to origins and in terms of the practical consequences in the realisation of access to this right for the children benefiting from this system.

Chapitre 5. Réalité et ambitions de la démocratisation des lois bioéthiques.

Bioethics laws have many particularities because of the technicity and sensitivity of the questions tackled. First, their revision is planned to be made within seven years. Second, since 2011, this revision must be preceded by a public debate called “États généraux de la bioéthique” which aims to involve all part of the society, from experts to uninitiated.The law regarding bioethics enacted on the 2nd of august 2021, is relevant on this point in two ways. First, it is the first law made after the requirements of 2011. It is therefore possible to assess the mild impact of public debate on law-making and decisions. Second, the changes made by the law enacted in 2021 allow us to identity the means mobilized to reinforce and perpetuate public participation in the field of bioethics.

Chapitre 18. Loi relative à la bioéthique 2021 : de quelques interrogations dans la pratique des équipes médicales.

The law on bioethics of 2 August 2021 introduced a number of innovations that have raised many questions for professionals. For the medical teams at assisted reproduction centres, the disappearance of the notion of medical indication represents a real paradigm shift. Should there be limits on access to MAP methods? The legal texts set certain limits. Are these limits related to human physiology, to the benefit-risk ratio or to social or medico-economic considerations? We will discuss the issues of the age at which a person can benefit from PGM, self-preservation of gametes for his or her own benefit, access to the donor’s identity and special interviews with the multidisciplinary team. Finally, the need for clear, objective information will be emphasised, especially as article 4 of the law provides for a public health plan: prevention/public education, information/female and male fertility, which to date has not been mentioned.

Chapitre 17. Du père caché au père révélé, l'émergence d'un lien sui generis.

The bioethics bill reflects a paradigm shift in filiation. Indeed, the bill provides for the lifting of donor anonymity at the age of majority of the child born of the donation. However, the legislator does not provide for a specific legal regime qualifying the link between the donor and the child born of the donation. It thus proceeds to a negative qualification of a situation that nevertheless entails important legal consequences. One then wonders about the nature of this relationship and about the potential consequences induced by the lifting of anonymity, consequences that are both legal and social. This article will then make it possible to dissociate the notion of filiation and the progressive emergence of the right of access to one’s origins.

Chapitre 16. Les effets de la loi sur la filiation.

The bioethics law of 2 August 2021 opened up MAP to couples of women, thus enabling a child to have two women as parents and overturning the law of filiation. The legislator has created a new tool for establishing filiation by blood, the joint recognition. Despite its name, this joint recognition only applies to the woman who has not given birth, creating unequal filiation between the two women, and does not fit easily into the common law of filiation by blood.

Researching the future: scenarios to explore the future of human genome editing.

BACKGROUND: Forward-looking, democratically oriented governance is needed to ensure that human genome editing serves rather than undercuts public values. Scientific, policy, and ethics communities have recognized this necessity but have demonstrated limited understanding of how to fulfill it. The field of bioethics has long attempted to grapple with the unintended consequences of emerging technologies, but too often such foresight has lacked adequate scientific grounding, overemphasized regulation to the exclusion of examining underlying values, and failed to adequately engage the public. METHODS: This research investigates the application of scenario planning, a tool developed in the high-stakes, uncertainty-ridden world of corporate strategy, for the equally high-stakes and uncertain world of the governance of emerging technologies. The scenario planning methodology is non-predictive, looking instead at a spread of plausible futures which diverge in their implications for different communities' needs, cares, and desires. RESULTS: In this article we share how the scenario development process can further understandings of the complex and dynamic systems which generate and shape new biomedical technologies and provide opportunities to re-examine and re-think questions of governance, ethics and values. We detail the results of a year-long scenario planning study that engaged experts from the biological sciences, bioethics, social sciences, law, policy, private industry, and civic organizations to articulate alternative futures of human genome editing. CONCLUSIONS: Through sharing and critiquing our methodological approach and results of this study, we advance understandings of anticipatory methods deployed in bioethics, demonstrating how this approach provides unique insights and helps to derive better research questions and policy strategies.

Antiracism: An Ethical Imperative.

Pediatric ethicists hold a privileged position of influence within health care institutions. Such a position confers a corresponding responsibility to address barriers to the health and flourishing of all children. A major barrier to children's health is racism. Pediatric ethicists can, and should, leverage their position to address racism both in institutional policy and the provision of pediatric care. Health care's historical and continued contributions to fostering and sustaining racist values and systems mean that those within all medical fields- regardless of race, ethnicity, gender, age, or profession-should consider ways they can work to offset and ultimately dismantle those values and systems. Institutional policy is a critical mechanism propagating racism in hospitals and an area where ethicists have a unique perspective to bring antiracism into ethical analysis. Many institutional and organizational policies have unintended consequences, negatively impacting children and families who have been historically marginalized and oppressed. In this paper, we report and discuss existing policies, along with how they are implemented (procedures) and how they are conducted (practices), identified through a workshop during a pediatric subgroup meeting at an annual bioethics conference. We highlight the need to focus on these structural factors and reference scholarship that can be used to correct institutional policies that uphold white supremacy. We conclude with actionable, concrete recommendations for change.