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1.
Bioethics ; 2024 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-38662961

RESUMO

Mobile health tools are often said to empower users by providing them with the information they need to exercise control over their health. We aim to bring clarity to this claim, and in doing so explore the relationship between empowerment and autonomy. We have identified three distinct models embedded in the empowerment rhetoric: empowerment as information, empowerment as control, and empowerment as values. Each distinct model of empowerment gives rise to an associated problem. These problems, the Problem of Interpretation, the Value Alignment Problem, and the Priority Problem, show that mobile health tools in their current form are either insufficient for empowerment or are self-defeating. These digital health technologies encourage users to adopt an individualized conception of autonomy, one that may weaken the doctor-patient relationship and undermine practices in shared decision making, and ultimately may not deliver on improving the health outcomes for those that need it the most.

2.
Artigo em Inglês | MEDLINE | ID: mdl-38683752

RESUMO

PURPOSE: In the past decades, a positive attitude towards having children has been reported in young people. The current generation of adolescents is increasingly concerned about environmental cataclysm which may have an impact on their desire for children. The purpose of this study is to depict the current attitudes in Flemish adolescents towards having children. MATERIALS AND METHODS: All secondary schools in Flanders (Belgium) were invited to distribute an anonymous online survey among their pupils in the last two years of secondary education. In total, 1700 adolescents participated and provided quantitative and qualitative data on their reproductive intentions. RESULTS: Most pupils expressed a desire for children (60.2%), 24.7% were undecided and 10.8% were not willing to have children. Significantly more boys than girls would like to have children (67.0% versus 61.7%, p < 0.01). Adolescents who were uncertain about having children or not interested, reported financial reasons and loss of freedom as most important reasons. CONCLUSIONS: While most adolescents would like to have children in the future, one in four adolescents is undecided and one in ten indicates a wish to remain childless; reasons for wanting children are rather personal, reasons for not wanting children are rather pragmatic.


A desire for parenthood is no longer the norm: 60% of Flemish adolescents would like to build a family, but many are considering a future without children.

3.
Hum Reprod ; 39(4): 647-657, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38364208

RESUMO

STUDY QUESTION: Which clinical and embryological factors should be considered to apply double embryo transfer (DET) instead of elective single embryo transfer (eSET)? SUMMARY ANSWER: No clinical or embryological factor per se justifies a recommendation of DET instead of eSET in IVF/ICSI. WHAT IS KNOWN ALREADY: DET is correlated with a higher rate of multiple pregnancy, leading to a subsequent increase in complications for both mother and babies. These complications include preterm birth, low birthweight, and other perinatal adverse outcomes. To mitigate the risks associated with multiple pregnancy, eSET is recommended by international and national professional organizations as the preferred approach in ART. STUDY DESIGN, SIZE, DURATION: The guideline was developed according to the structured methodology for development and update of ESHRE guidelines. Literature searches were performed in PUBMED/MEDLINE and Cochrane databases, and relevant papers published up to May 2023, written in English, were included. Live birth rate, cumulative live birth rate, and multiple pregnancy rate were considered as critical outcomes. PARTICIPANTS/MATERIALS, SETTING, METHODS: Based on the collected evidence, recommendations were discussed until a consensus was reached within the Guideline Development Group (GDG). A stakeholder review was organized after the guideline draft was finalized. The final version was approved by the GDG and the ESHRE Executive Committee. MAIN RESULTS AND THE ROLE OF CHANCE: The guideline provides 35 recommendations on the medical and non-medical risks associated with multiple pregnancies and on the clinical and embryological factors to be considered when deciding on the number of embryos to transfer. These recommendations include 25 evidence-based recommendations, of which 24 were formulated as strong recommendations and one as conditional, and 10 good practice points. Of the evidence-based recommendations, seven (28%) were supported by moderate-quality evidence. The remaining recommendations were supported by low (three recommendations; 12%), or very low-quality evidence (15 recommendations; 60%). Owing to the lack of evidence-based research, the guideline also clearly mentions recommendations for future studies. LIMITATIONS, REASONS FOR CAUTION: The guideline assessed different factors one by one based on existing evidence. However, in real life, clinicians' decisions are based on several prognostic factors related to each patient's case. Furthermore, the evidence from randomized controlled trials is too scarce to formulate high-quality evidence-based recommendations. WIDER IMPLICATIONS OF THE FINDINGS: The guideline provides health professionals with clear advice on best practice in the decision-making process during IVF/ICSI, based on the best evidence currently available, and recommendations on relevant information that should be communicated to patients. In addition, a list of research recommendations is provided to stimulate further studies in the field. STUDY FUNDING/COMPETING INTEREST(S): The guideline was developed and funded by ESHRE, covering expenses associated with the guideline meetings, the literature searches, and the dissemination of the guideline. The guideline group members did not receive payment. DPB declared receiving honoraria for lectures from Merck, Ferring, and Gedeon Richter. She is a member of ESHRE EXCO, and the Mediterranean Society for reproductive medicine and the president of the Croatian Society for Gynaecological Endocrinology and Reproductive Medicine. CDG is the past Chair of the ESHRE EIM Consortium and a paid deputy member of the Editorial board of Human Reproduction. IR declared receiving reimbursement from ESHRE and EDCD for attending meetings. She holds an unpaid leadership role in OBBCSSR, ECDC Sohonet, and AER. KAR-W declared receiving grants for clinical researchers and funding provision to the institution from the Swedish Cancer Society (200170F), the Senior Clinical Investigator Award, Radiumhemmets Forskningsfonder (Dnr: 201313), Stockholm County Council FoU (FoUI-953912) and Karolinska Institutet (Dnr 2020-01963), NovoNordisk, Merck and Ferring Pharmaceuticals. She received consulting fees from the Swedish Ministry of Health and Welfare. She received honoraria from Roche, Pfizer, and Organon for chairmanship and lectures. She received support from Organon for attending meetings. She participated in advisory boards for Merck, Nordic countries, and Ferring. She declared receiving time-lapse equipment and grants with payment to institution for pre-clinical research from Merck pharmaceuticals and from Ferring. SS-R received research funding from Roche Diagnostics, Organon/MSD, Theramex, and Gedeo-Richter. He received consulting fees from Organon/MSD, Ferring Pharmaceuticals, and Merck Serono. He declared receiving honoraria for lectures from Ferring Pharmaceuticals, Besins, Organon/MSD, Theramex, and Gedeon Richter. He received support for attending Gedeon Richter meetings and participated in the Data Safety Monitoring Board of the T-TRANSPORT trial. He is the Deputy of ESHRE SQART special interest group. He holds stock options in IVI Lisboa and received equipment and other services from Roche Diagnostics and Ferring Pharmaceuticals. KT declared receiving payment for honoraria for giving lectures from Merck Serono and Organon. She is member of the safety advisory board of EDQM. She holds a leadership role in the ICCBBA board of directors. ZV received reimbursement from ESHRE for attending meetings. She also received research grants from ESHRE and Juhani Aaltonen Foundation. She is the coordinator of EHSRE SQART special interest group. The other authors have no conflicts of interest to declare. DISCLAIMER: This guideline represents the views of ESHRE, which were achieved after careful consideration of the scientific evidence available at the time of preparation. In the absence of scientific evidence on certain aspects, a consensus between the relevant ESHRE stakeholders has been obtained. Adherence to these clinical practice guidelines does not guarantee a successful or specific outcome, nor does it establish a standard of care. Clinical practice guidelines do not replace the need for application of clinical judgement to each individual presentation, nor variations based on locality and facility type. ESHRE makes no warranty, express or implied, regarding the clinical practice guidelines and specifically excludes any warranties of merchantability and fitness for a particular use or purpose (full disclaimer available at https://www.eshre.eu/Guidelines-and-Legal).


Assuntos
Fertilização in vitro , Injeções de Esperma Intracitoplásmicas , Feminino , Humanos , Recém-Nascido , Masculino , Gravidez , Coeficiente de Natalidade , Taxa de Gravidez , Nascimento Prematuro , Ensaios Clínicos Controlados Aleatórios como Assunto
4.
Bioethics ; 2023 Oct 03.
Artigo em Inglês | MEDLINE | ID: mdl-37786959

RESUMO

The typical outcome measure in infertility treatment is the (cumulative) healthy live birth rate per patient or per cycle. This means that those who end the treatment trajectory with a healthy baby in their arms are considered to be successful and those who do not are considered to have failed. In this article, we argue that by adopting the healthy live birth standard as the outcome measure that defines a successful fertility treatment, it becomes an interpretative self-fulfilling prophecy: those who achieve the goal consider themselves successful and those who do not consider themselves failures. This is regardless of the fact that having children is only one out of many ways to alleviate the suffering related to infertility and that stopping fertility treatment can also be a positive decision to move on to other goals, rather than a form of "giving up," "dropping out," "nonadherence," or failure. We suggest that those seeking fertility treatment would be served better by an alternative outcome measure, which can be equally self-fulfilling, according to which a successful treatment is one in which people leave the clinic released from the suffering that accompanied their status as infertile when they first entered the clinic. This new outcome measure still implies that walking out with a healthy baby is a positive outcome. What changes is that walking out without a baby can also be a positive outcome, rather than being marked exclusively as a failure.

5.
Humanit Soc Sci Commun ; 10(1): 83, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36909259

RESUMO

Since genomics is becoming commonplace in healthcare for the diagnosis, treatment, and prevention, the prospect of generating a genomic passport for all citizens is gaining traction. While this would have many advantages, it raises ethical issues requiring societal debate alongside academic reflection. Hence, Sciensano-the Belgian scientific Institute of Public Health-organised an online citizen engagement on genomic information usage, including a question on a genomic passport for all. The inductive thematic analysis of participants' contributions highlighted vulnerability as a fundamental concern, while this has not received sufficient attention so far in genomics. Participants expressed their vulnerability in two ways. First, the genomic passport would inform them about their ontological vulnerability. By revealing their constitutional weaknesses (predisposition to diseases), it reminds them that everyone is unavoidably and perennially at risk of being harmed. Second, the misuse of the genomic passport can add situational vulnerabilities (e.g., discrimination causing psychological and economic harm). Moreover, the fundamental uncertainty in genomics-how will such sensitive information be used, and how will the science evolve?-exacerbates these vulnerabilities. This article ends with recommendations to alleviate these vulnerabilities in genomics now and in the future in which the genomic passport may become a reality.

6.
Bioethics ; 36(8): 849-857, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35678064

RESUMO

The centrality of trust in traditional doctor-patient relationships has been criticized as inordinately paternalistic, yet in today's discussions about medical ethics-mostly in response to disruptive innovation in healthcare-trust reappears as an asset to enable empowerment. To turn away from paternalistic trust-based doctor-patient relationships and to arrive at an empowerment-based medical model, increasing reference is made to the importance of nurturing trust in technologies that are supposed to bring that empowerment. In this article we stimulate discussion about why the move towards patient empowerment may not be able to keep clear of the criticism of trust in traditional patient-doctor relationships. First, we explore how such a shift in trust dynamics might corrode patient empowerment in the name of patient empowerment. Second, we examine how a translocation of trust may at best push the "trust issue" elsewhere and at worst make it harder to evaluate trustworthiness.


Assuntos
Relações Médico-Paciente , Confiança , Ética Médica , Humanos , Paternalismo , Participação do Paciente
7.
Reprod Biomed Soc Online ; 14: 156-168, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35024472

RESUMO

Given the controversial nature of research into in-vitro gametogenesis (IVG), this study set out to investigate the current attitudes towards IVG in the general Belgian population in order to anticipate potential future barriers and misunderstandings. A questionnaire was developed and incorporated into a web-based online survey and sent out to Belgians aged ≥ 18 years in September 2018 until a representative sample (by age, gender and region) of 1000 participants was reached. Respondents expressed an overall positive attitude towards IVG and its possible future applications, with the exception of the use of IVG in postmenopausal women. They were ambivalent about the importance of genetic parenthood and about the necessary experiments on animals and embryos to bring IVG to the clinic. While the willingness to accept greater risks for IVG than for other assisted reproductive technology treatments was low (17.5%), the use of spare in-vitro fertilization embryos to study those risks was acceptable for 55.8% of participants; embryo creation was acceptable for 38.1%; and experiments on mice and monkeys were acceptable for 45.3% and 30.4%, respectively. Finally, 85.6% of participants agreed that the Belgian Government should strictly regulate IVG. In conclusion, preclinical research into IVG and other reproductive technologies elicits a great diversity of attitudes towards the importance of genetic parenthood and the acceptability of embryo and animal research. There is a need for public dialogue on these topics.

8.
J Med Ethics ; 48(12): 1043-1047, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-34526369

RESUMO

Many ethical concerns have been voiced about Clinical Decision Support Systems (CDSSs). Special attention has been paid to the effect of CDSSs on autonomy, responsibility, fairness and transparency. This journal has featured a discussion between Rosalind McDougall and Ezio Di Nucci that focused on the impact of IBM's Watson for Oncology (Watson) on autonomy. The present article elaborates on this discussion in three ways. First, using Jonathan Pugh's account of rational autonomy we show that how Watson presents its results might impact decisional autonomy, while how Watson produces knowledge might affect practical autonomy. Second, by drawing an analogy with patient decision aids we identify an empirical way of estimating Watson's impact on autonomy (ie, value-congruence). Lastly, McDougall introduced the notion of value-flexible design as a way to account for the diverging preferences patients hold. We will clarify its relation with the established domain of value-sensitive design. In terms of the tripartite methodology of value-sensitive design, we offer a conceptual clarification using Pugh's account of rational autonomy, an empirical tool to evaluate Watson's impact on autonomy and situate a group of technical options to incorporate autonomy in Watson's design.


Assuntos
Oncologia , Princípios Morais , Humanos
9.
Sci Rep ; 11(1): 15834, 2021 08 04.
Artigo em Inglês | MEDLINE | ID: mdl-34349199

RESUMO

Exome-based testing for genetic diseases can reveal unsolicited findings (UFs), i.e. predispositions for diseases that exceed the diagnostic question. Knowledge of patients' interpretation of possible UFs and of motives for (not) wanting to know UFs is still limited. This lacking knowledge may impede effective counselling that meets patients' needs. Therefore, this article examines the meaning of UFs from a patient perspective. A qualitative study was conducted and an interpretative phenomenological analysis was made of 14 interviews with patients with an inherited retinal disease. Patients assign a complex meaning to UFs, including three main components. The first component focuses on result-specific qualities, i.e. the characteristics of an UF (inclusive of actionability, penetrance, severity and age of onset) and the consequences of disclosure; the second component applies to a patient's lived illness experiences and to the way these contrast with reflections on presymptomatic UFs; the third component addresses a patient's family embedding and its effect on concerns about disease prognosis and genetic information's family relevance. The complex meaning structure of UFs suggests the need for counselling procedures that transcend a strictly clinical approach. Counselling should be personalised and consider patients' lived illness experiences and family context.


Assuntos
Adaptação Psicológica , Tomada de Decisões , Sequenciamento do Exoma/métodos , Predisposição Genética para Doença , Genômica/métodos , Preferência do Paciente/psicologia , Doenças Retinianas/genética , Humanos , Pesquisa Qualitativa , Doenças Retinianas/psicologia
10.
Med Health Care Philos ; 24(4): 677-685, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34228303

RESUMO

Many pregnant women use pregnancy related mHealth (PRmHealth) applications, encompassing a variety of pregnancy apps and wearables. These are mostly directed at supporting a healthier fetal development. In this article we argue that the increasing dominance of PRmHealth stands in want of empirical knowledge affirming its beneficence in terms of improved pregnancy outcomes. This is a crucial ethical issue, especially in the light of concerns about increasing pressures and growing responsibilities ascribed to pregnant women, which may, in turn, be reinforced by PRmHealth. A point can be made that it would be ethically askew if PRmHealth does not lead to improved pregnancy outcomes, while at the same time increasing maternal duties to closely monitor fetal development. We conclude that more research is needed to get a view on the benefits and burdens of PRmHealth in order to ethically assess whether the latter are proportionate to the former. If not, there is a case in saying that endorsement of PRmHealth is overdemanding.


Assuntos
Autonomia Pessoal , Telemedicina , Beneficência , Feminino , Humanos , Gravidez , Gestantes
12.
Reprod Biomed Online ; 41(6): 1144-1150, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32967810

RESUMO

RESEARCH QUESTION: What ethical implications, issues and concerns play a role in conducting follow-up studies of children born after assisted reproductive technologies (ART)? DESIGN: Literature study and relevant experiences of academic medical centres in Brussels, Belgium, and Maastricht, the Netherlands were used to identify and analyse the most pertinent ethical implications, issues and concerns. RESULTS: According to recommendations from the European Society of Human Reproduction and Embryology, follow-up (ideally long term) of children conceived through medically assisted reproduction (MAR) should be an integral part of introducing new ART. With potentially risky new ART on the horizon, these recommendations need to be taken more seriously. Apart from practical barriers, such as funding, challenges for follow-up include securing active involvement of families of children conceived through MAR, starting with parents of young children, and ideally involving consenting adolescents and adults during a large part of their lives, possibly even into the next generation. CONCLUSIONS: From an ethical viewpoint, the most pertinent issues include the proportionality of the inevitable burdens and risks for families of children conceived through MAR, and the implications of the principle of respect for autonomy. The proportionality requirement is most critical when it concerns incompetent children, who should not be included in research with more than minimal burdens and risks if there is no reasonable expectation of benefit for themselves. With respect for autonomy, we argue that, when seeking voluntary consent for participating in follow-up studies that meet the condition of proportionality, professionals may encourage members of families of children conceived through MAR to partake in follow-up research.


Assuntos
Desenvolvimento Infantil/fisiologia , Monitorização Fisiológica , Medicina Reprodutiva/ética , Adulto , Bélgica , Pesquisa Biomédica/ética , Criança , Pré-Escolar , Confidencialidade/ética , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Consentimento Livre e Esclarecido , Masculino , Monitorização Fisiológica/ética , Países Baixos , Autonomia Pessoal , Gravidez , Medicina Reprodutiva/métodos , Técnicas de Reprodução Assistida/ética
13.
J Law Biosci ; 7(1): lsaa008, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32728456

RESUMO

In response to concerns related to privacy in the context of coronavirus disease 2019 (COVID-19), recently European and national Data Protection Authorities (DPAs) issued guidelines and recommendations addressing a variety of issues related to the processing of personal data for preventive purposes. One of the recurring questions in these guidelines is related to the rights and responsibilities of employers and employees in reporting, recording, and communicating COVID-19 cases in workplace. National DPAs in some cases adopted different approaches regarding duties in reporting and communicating the COVID-19 cases; however, they unanimously stressed the importance of adopting privacy-preserving approaches to avoid raising concerns about surveillance and stigmatization. We stress that in view of the increasing use of new data collection and sharing tools such as 'tracing and warning' apps, the associated privacy-related risks should be evaluated on an ongoing manner. In addition, the intricacies of different settings where such apps may be used should be taken into consideration when assessing the associated risks and benefits.

14.
Hum Reprod Open ; 2020(2): hoaa003, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32201741

RESUMO

The field of reproductive medicine has been criticized for introducing ARTs without systematic research on possible safety risks and for failing to meet the standards of evidence-based innovation held elsewhere in medicine. In this paper, firstly, we ask whether 'responsible innovation' has been a concern for the field, and if so, how it has understood the practical implications of this idea for the development and introduction of potentially risky new ARTs. Secondly, we consider whether the field has indeed fallen short of its responsibilities in this respect, and if so, how things can be improved. To answer these questions, we present three case studies involving the introduction of a new reproductive technology: ICSI, preimplantation genetic testing and mitochondrial replacement therapy. As a framework for analyzing these cases, we used Per Sandin's account of the four dimensions of dealing with risks (threat, uncertainty, action, command) that are central to debates about the possible role of the so-called precautionary principle. We conclude that, although offspring safety concerns have been on the agenda of the debate about bringing the relevant technologies to the clinic, systematic safety and effectiveness studies were not always conducted. As professionals in assisted reproduction have a responsibility to take account of the welfare of the children they are creating, we suggest a policy of proceeding with systematic caution. Legal measures may be needed to ensure that professional guidance is followed in practice. Finally, an open question concerns the threshold for acceptable risk in the context of introducing new ARTs. Multiple stakeholders, including professional societies and patient organizations, should have a role in the urgent debate about this.

15.
BMC Med Ethics ; 21(1): 9, 2020 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-32000764

RESUMO

BACKGROUND: Incidental findings (IFs) and secondary findings (SFs), being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Arguments for reporting these results or not doing so typically relate to the principles of autonomy, non-maleficence and beneficence. However, these principles frequently conflict and are insufficient by themselves to come to a conclusion. This study investigates empirically how ethical principles are considered when actually reporting IFs or SFs and how value conflicts are weighed. METHODS: A qualitative focus group study has been undertaken, including a multidisciplinary group of professionals from Belgian centres for medical genetics. The data were analysed thematically. RESULTS: All eight Belgian centres participated in this study. Ethical values were frequently referred to for disclosure policies on IFs and SFs. Participants invoked respect for patient autonomy to support the disclosure of IFs and opt-out options for IFs and SFs, non-maleficence for the professional delineation of reportable IFs and opt-out options for IFs and SFs and (the particular scope of) beneficence for the mandatory reporting of actionable IFs, the delineation of reportable IFs and a current decline of actively pursued SFs. Professional assumptions about patients' genetic literacy were an important factor in the weighing of values. CONCLUSIONS: In line with the traditional bioethical discourse, the mandatory reporting of actionable IFs might be interpreted as a "technological, soft paternalism". Restricting patients' choices might be acceptable, but then its motives should be valid and its beneficent outcomes highly plausible. Hence, the presuppositions of technological, soft paternalism - patients' inability to make informed decisions, normative rationality, the efficacy of beneficent outcomes and the delineated spectrum of beneficence - should be approached critically. Moreover, distributive justice should be considered an important value in the delineation of the current scope of the ethical debate on IFs and SFs. This study of guiding values may stimulate the debate on the ethical grounds for a solid policy on IFs and SFs internationally.


Assuntos
Atitude do Pessoal de Saúde , Revelação/ética , Genômica/ética , Bélgica , Grupos Focais , Humanos , Achados Incidentais , Entrevistas como Assunto , Autonomia Pessoal , Pesquisa Qualitativa
16.
Bioethics ; 34(4): 364-370, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32037564

RESUMO

In this paper, we aim to stimulate ethical debate about the morally relevant connection between ectogenesis and the foetus as a potential beneficiary of treatment. Ectogenesis could facilitate foetal interventions by treating the foetus independently of the pregnant woman and provide easier access to the foetus if interventions are required. The moral relevance hereof derives from the observation that, together with other developments in genetic technology and prenatal treatment, this may catalyse the allocation of a patient status to the foetus. The topic of foetal medicine is of growing interest to clinicians, and it also deserves due attention from an ethical perspective. To the extent that these developments contribute to the allocation of a patient status to the foetus (and to its respective interests for medical treatment), normative questions arise about how moral responsibilities towards foetal interests should be balanced against the interests of the pregnant woman. We conclude that, even if ectogenesis could facilitate foetal therapy, it is important to remain sensitive to the fact that it would not circumvent the key ethical concerns that come with in utero foetal treatment and that it may even exacerbate potential conflicts between directive treatment recommendations and the pregnant woman's autonomous decision to the contrary.


Assuntos
Ectogênese/ética , Terapias Fetais/ética , Feto , Gestantes , Beneficência , Feminino , Humanos , Obrigações Morais , Autonomia Pessoal , Gravidez/ética
17.
Bioethics ; 34(1): 33-40, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31222790

RESUMO

Germline genome editing is often disapproved of at the international policy level because of its possible threats to human dignity. However, from a critical perspective the relationship between this emerging technology and human dignity is relatively understudied. We explore the main principles that are referred to when 'human dignity' is invoked in this context; namely, the link with eugenics, the idea of a common genetic heritage, the principle of equal birth and broader equality and justice concerns. Yet the concept is also used in favour of germline genome editing as it might improve the overall well-being of future generations. We conclude that dignity concerns do not justify a complete ban on safe heritable genome editing but should inform the implementation of side constraints to ensure that the value judgements about human traits that are inherent in this practice do not result in a diminished basic respect for those people affected by them.


Assuntos
Edição de Genes/ética , Genoma Humano , Células Germinativas , Direitos Humanos/ética , Direitos Humanos/legislação & jurisprudência , Pessoalidade , Edição de Genes/legislação & jurisprudência , Humanos
18.
BMC Med Genomics ; 12(1): 123, 2019 08 20.
Artigo em Inglês | MEDLINE | ID: mdl-31429751

RESUMO

BACKGROUND: Incidental and secondary findings (IFs and SFs) are subject to ongoing discussion as potential consequences of clinical exome sequencing (ES). International policy documents vary on the reporting of these findings. Discussion points include the practice of unintentionally identified IFs versus deliberately pursued SFs, patient opt-out possibilities and the spectrum of reportable findings. The heterogeneity of advice permits a non-standardised disclosure but research is lacking on actual reporting practices. Therefore, this study assessed national reporting practices for IFs and SFs in clinical ES and the underlying professional perspectives. METHODS: A qualitative focus group study has been undertaken, including professionals from Belgian centres for medical genetics (CMGs). Data were analysed thematically. RESULTS: All Belgian CMGs participated in this study. Data analysis resulted in six main themes, including one regarding the reporting criteria used for IFs. All CMGs currently use ES-based panel testing. They have limited experience with IFs in clinical ES and are cautious about the pursuit of SFs. Two main reporting criteria for IFs were referred to by all CMGs: the clinical significance of the IF (including pathogenicity and medical actionability) and patient-related factors (including the patient's preference to know and patient characteristics). The consensus over the importance of these criteria contrasted with their challenging interpretation and application. Points of concern included IFs' pathogenicity in non-symptomatic persons, IFs concerning variants of uncertain significance, the requirement and definition of medical actionability and patient opt-out possibilities. Finally, reporting decisions were guided by the interaction between the clinical significance of the IF and patient characteristics. This interaction questions the possible disclosure of findings with context-dependent and personal utility, such as IFs concerning a carrier status. To evaluate the IF's final relevance, a professional and case-by-case deliberation was considered essential. CONCLUSIONS: The challenging application of reporting criteria for IFs results in diversified practices and policy perspectives within Belgian CMGs. This echoes international concerns and may have consequences for effective policy recommendations.


Assuntos
Sequenciamento do Exoma , Exoma/genética , Grupos Focais , Achados Incidentais , Padrões de Prática Médica , Relatório de Pesquisa , Bélgica , Genética Médica , Humanos
19.
Camb Q Healthc Ethics ; 28(3): 499-508, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31298196

RESUMO

Research into the development of stem cell-derived (SCD) gametes in humans, otherwise known as in vitro gametogenesis (IVG), is largely motivated by reproductive aims. Especially, the goal of establishing genetic parenthood by means of SCD-gametes is considered an important aim. However, like other applications in the field of assisted reproduction, this technology evokes worries about the possibility of creating so-called 'designer babies.' In this paper, we investigate various ways in which SCD-gametes could be used to create such preference-matched offspring, and what this would mean for the acceptability of IVG, if it is premised that it is morally problematic to 'design' offspring. We argue that IVG might facilitate the creation of preference-matched offspring, but conclude that this should not undermine the moral acceptability of IVG altogether-even if one concedes the premise that creating 'designer babies' is morally problematic. In the light of this, we also point at a possible inconsistency for a position that condemns the creation of 'designer offspring,' while accepting the various endeavors to have genetically related offspring.


Assuntos
Fertilização in vitro/ética , Gametogênese , Edição de Genes/ética , Humanos , Células-Tronco
20.
Clin Obstet Gynecol ; 62(2): 217-227, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30908290

RESUMO

In the last 10 years, expanded preconception carrier screening has become widely available and helps patients/couples make more informed decisions with regard to their reproductive options and facilitates more effective preconception planning, prenatal diagnosis, condition-specific counseling, and condition-specific care. This review provides an overview of expanded preconception carrier screening's high-throughput genotyping and sequencing approaches, current guidelines, implementation challenges and evolving ethical quandaries.


Assuntos
Triagem de Portadores Genéticos , Cuidado Pré-Concepcional , Feminino , Triagem de Portadores Genéticos/ética , Aconselhamento Genético , Necessidades e Demandas de Serviços de Saúde , Sequenciamento de Nucleotídeos em Larga Escala , Humanos , Masculino , Doação de Oócitos , Aceitação pelo Paciente de Cuidados de Saúde , Guias de Prática Clínica como Assunto , Padrões de Prática Médica , Espermatozoides , Doadores de Tecidos/ética
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