Mapping ethical, legal, and social implications (ELSI) of fertility preservation.

RESEARCH QUESTION: The study examines the ethical, legal, and social implications of fertility preservation, highlighting its importance across oncofertility, elective egg freezing, and posthumous assisted reproduction, as well as its impact on transgender individuals undergoing gender-affirming surgeries. DESIGN: A comprehensive analysis of 600 articles, focusing on a diverse range of disciplines, including bioethics, psychology, and sociology, to explore public and healthcare professionals' knowledge, patient experiences, and regulatory constraints. RESULTS: The body of literature is growing, indicating increasing recognition of FP's significance. Key themes included the centrality of counseling and informed decision-making, especially in oncofertility and EEF, and ethical debates surrounding informed consent and the autonomy of involved individuals. The analysis underscored a western-centric bias in current research, emphasizing the need for more inclusive and culturally sensitive studies. CONCLUSIONS: The study calls for a nuanced understanding of FP, advocating for policies that consider ethical, cultural, and social dimensions. It suggests the necessity for interdisciplinary research to address identified gaps, particularly in understanding non-Western perspectives and ensuring equitable access to FP services globally. Moreover, the review emphasizes the importance of integrating patient-centric approaches and ethical frameworks to guide FP practices and policies, ensuring they respect diverse values and meet individuals' needs.

Physician Involvement in Promoting Gun Safety.

Firearm-related deaths are on the rise in the United States, especially among our youth. Tragically, proper firearm storage and safety could have prevented a great number of these deaths. Professional and public health organizations have thus encouraged physicians to provide direct patient counseling on firearm safety. Yet, even with these recommendations, the majority of physicians are still not talking to their patients about this issue. There may be many reasons for this, including concerns about liability, feeling unprepared, patient discomfort, and lack of time during office visits. Despite these concerns, we argue that physicians have an ethical obligation to discuss firearm safety with their patients. Making these discussions a part of routine clinical care would go a long way in the bipartisan effort to protect public safety and improve public health.

Rethinking counselling in prenatal screening: An ethical analysis of informed consent in the context of non-invasive prenatal testing (NIPT).

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non-invasive prenatal testing (NIPT) in first-trimester prenatal screening programmes: amongst others its procedural ease-it only requires a blood draw and reaches high levels of reliability-might hinder women's understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared to informed choice, and for a focus on value-consistent choices and personalized informational preferences. We argue for a three-step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women's values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical-technical information and are asked to make a decision about screening; (3) during post-test counselling, women are supported in decision-making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre-test) counselling, where techniques for expanding genome analysis and burdensome test-outcomes challenge counselling of patients.

Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices.

BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal counselor with a review of the pertinent obstetrical and neonatal outcome data and ethical discussion to help them in supporting families with the correct information for counseling. METHODS/SEARCH STRATEGY: This article provides a review of the literature on facts and myths and provides reasonable outcome data to help families in decision making. FINDINGS/RESULTS: These disorders comprise a heterogeneous group regarding presentation, outcomes, and parental goals. The authors maintain that there needs to be balanced decision-making between parents and providers for the appropriate care for the woman and her infant. IMPLICATIONS FOR PRACTICE: Awareness of this literature can help ensure that prenatal and palliative care consultation incorporates the appropriate facts and parental values and in the end supports differing choices that can support the infant's interests.

Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery.

During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.

Preimplantation genetic testing for more than one genetic condition: clinical and ethical considerations and dilemmas.

STUDY QUESTION: Which clinical and ethical aspects of preimplantation genetic testing for monogenic disorders or structural rearrangements (PGT-M, PGT-SR) should be considered when accepting requests and counselling couples for PGT when applied for more than one condition (combination-PGT; cPGT-M/SR)? SUMMARY ANSWER: cPGT is a feasible extension of the practice of PGT-M/SR that may require adapting the criteria many countries have in place with regard to indications-setting for PGT-M/SR, while leading to complex choices that require timely counselling and information. WHAT IS KNOWN ALREADY: Although PGT-M/SR is usually performed to prevent transmission of one disorder, requests for PGT-M/SR for more than one condition (cPGT-M/SR) are becoming less exceptional. However, knowledge about implications for a responsible application of such treatments is lacking. STUDY DESIGN, SIZE, DURATION: Retrospective review of all (40) PGT-M/SR applications concerning more than one genetic condition over the period 1995-2018 in the files of the Dutch national PGT centre. This comprises all relevant national data since the start of PGT in the Netherlands. PARTICIPANTS/MATERIALS, SETTING AND METHODS: Data regarding cPGT-M/SR cases were collected by means of reviewing medical files of couples applying for cPGT-M/SR. Ethical challenges arising with cPGT-M/SR were explored against the background of PGT-M/SR regulations in several European countries, as well as of relevant ESHRE-guidance regarding both indications-setting and transfer-decisions. MAIN RESULTS AND THE ROLE OF CHANCE: We report 40 couples applying for cPGT-M/SR of which 16 couples started their IVF treatment. Together they underwent 39 IVF cycles leading to the birth of five healthy children. Of the couples applying for cPGT, 45% differentiated between a primary and secondary condition in terms of perceived severity. In the light of an altered balance of benefits and drawbacks, we argue the 'high risk of a serious condition' standard that many countries uphold as governing indications-setting, should be lowered for secondary conditions in couples who already have an indication for PGT-M/SR. As a consequence of cPGT, professionals will more often be confronted with requests for transferring embryos known to be affected with a condition that they were tested for. In line with ESHRE guidance, such transfers may well be acceptable, on the condition of avoiding a high risk of a child with a seriously diminished quality of life. LIMITATIONS, REASONS FOR CAUTION: We are the first to give an overview of cPGT-M/SR treatments. Retrospective analysis was performed using national data, possibly not reflecting current trends worldwide. WIDER IMPLICATIONS OF THE FINDINGS: Our observations have led to recommendations for cPGT-M/SR that may add to centre policy making and to the formulation of professional guidelines. Given that the introduction of generic methods for genomic analysis in PGT will regularly yield incidental findings leading to transfer requests with these same challenges, the importance of our discussion exceeds the present discussion of cPGT. STUDY FUNDING/COMPETING INTEREST(S): The research for this publication was funded by the Dutch Organization for Health Research and Development (ZonMw), project number: 141111002 (Long term safety, quality and ethics of Preimplantation Genetic Diagnosis). None of the authors has any competing interests to declare.

Ethical dilemmas and legal aspects in contraceptive counselling for women with intellectual disability-Focus group interviews among midwives in Sweden.

BACKGROUND: Few studies have explored ethical and legal issues in contraceptive counselling among women with intellectual disability (ID). This study aimed to gain a deeper understanding of these issues during midwifery contraceptive counselling. METHOD: The present authors interviewed 19 midwives in five focus groups in Sweden 2016 - 2017 and analysed data with content analysis. RESULTS: The participants expressed that women with intellectual disability have equal right to relationships and sexual expressions, but feared exposure to sexual exploitation/abuse. They experienced ethical dilemmas related to principles of fairness and autonomy, but strived to provide assistance in spite of the women's cognitive impairment, presence of supporting persons and uncertainty of optimal counselling. Organizational support was insufficient. CONCLUSIONS: The midwives experienced ambivalence, uncertainty and ethical dilemmas in their counselling. They were, however, aware of legal aspects and strived for the women's best interest, right to self-determination and autonomous choices. The participants wanted better professional teamwork and support.

Ethical and counseling challenges in prenatal exome sequencing.

OBJECTIVE: Ethical and counseling challenges are expected with the introduction of prenatal whole exome sequencing. In this study, we describe specific challenges identified through the UNC-Chapel Hill Prenatal Exome Sequencing Study. METHODS: Participants were a subset of women participating in the fetal exome study, which has enrolled 73 mother-father-fetus trios in pregnancies diagnosed with structural anomalies and normal standard genetic testing results. In this descriptive study, cases were reviewed by members of the research team, including a bioethicist, to identify counseling challenges. Illustrative cases were chosen by group consensus. RESULTS: Four illustrative cases were identified for further analysis. Challenges included need for adequate counseling and informed consent, challenges in prenatal variant interpretation, performing prenatal diagnosis in subsequent pregnancies, inability to identify a genetic etiology, and identifying parental secondary findings. CONCLUSION: Our study illustrates several challenges identified in an ongoing prenatal exome study. While genomic medicine is a powerful tool for prenatal diagnosis, it is important that clinicians understand the ethical implications and parental perceptions of this testing modality.

A qualitative study on the voluntariness of counselling and testing for HIV amongst antenatal clinic attendees: do women have a choice?

BACKGROUND: Mother-to-child transmission (MTCT) of the Human Immunodeficiency -Virus (HIV) is a serious public health problem, contributing up to 90% of childhood HIV infections. In Tanzania, the prevention-of-mother-to-child-transmission (PMTCT) feature of the HIV programme was rolled out in 2000. The components of PMTCT include counselling and HIV testing directed at antenatal clinic attendees. It is through the process of Provider Initiated Counseling and Testing (PITC) that counselling is offered participant confidentiality and voluntariness are upheld and valid consent obtained. The objective of the study was to explore antenatal clinic attendees' experiences of the concept of voluntariness vis- a- vis the implementation of prior counseling and subsequent testing for HIV under the PITC as part of their antenatal care. METHODS: In-depth interviews were conducted with17 antenatal clinic attendees and 6 nursing officers working at the Muhimbili National Hospital (MNH) antenatal clinic. The study data were analyzed using qualitative content analysis. RESULTS: Antenatal clinic attendees' accounts suggested that counselling and testing for HIV during pregnancy was voluntary, and that knowledge of their HIV status led them to access appropriate treatment for both mother and her newborn baby. They reported feeling no pressure from nursing officers, and gave verbal consent to undergo the HIV test. However, some antenatal clinic attendees reported pressure from their partners to test for HIV. Healthcare providers were thus faced with a dilemma of disclosure/ nondisclosure when dealing with discordant couples. CONCLUSION: Antenatal clinic attendees at MNH undertook the PITC for HIV voluntarily. This was enhanced by their prior knowledge of HIV, the need to prevent mother- to- child transmission of HIV, and the effectiveness of the voluntary policy implemented by nursing officers.

Irish clinical and counselling psychologists' experiences and views of mandatory personal therapy during training: A polarisation of ethical concerns.

Although there have been some recent changes in Ireland, the practice of mandating personal therapy during training has traditionally differed between counselling and clinical psychologists. Irish psychologists (n = 258: 170 clinical, 88 counselling) took part in a survey study of experiences and views regarding this practice. Counselling psychologists reported higher rates of lifetime and current attendance at personal therapy compared to clinical psychologists, and nearly all had experienced mandated personal therapy compared to a minority of the clinical group. However, the clinical psychologists had a high rate of attendance at personal therapy compared to that reported for their British peers, indicating a high regard for personal therapy amongst Irish clinicians despite the absence of a training mandate. Five factors were found to be independent predictors of agreement with mandating personal therapy during training-lifetime experience of personal therapy, being a counselling psychologist, experience of mandated therapy, being more recently qualified, and longer attendance at personal therapy. Thematic analysis of the psychologists' open responses regarding mandated therapy indicated that the majority believed that personal therapy was an important part of ethical, effective practice, and valuable in enhancing self-awareness and learning from the client experience. Ethical concerns about a mandate were polarised between the two psychology specialisms, more counselling psychologists emphasising the dangers and questionable efficacy of psychologists practising psychotherapy without personal therapy experience, and more clinical psychologists questioning the efficacy and ethics of imposing a mandate on trainees. Recommendations are made regarding this issue for trainers of both specialisms.

Evidence-based, ethically justified counseling for fetal bilateral renal agenesis.

BACKGROUND: Not much data are available on the natural history of bilateral renal agenesis, as the medical community does not typically offer aggressive obstetric or neonatal care asbilateral renal agenesis has been accepted as a lethal condition. AIM: To provide an evidence-based, ethically justified approach to counseling pregnant women about the obstetric management of bilateral renal agenesis. STUDY DESIGN: A systematic literature search was performed using multiple databases. We deploy an ethical analysis of the results of the literature search on the basis of the professional responsibility model of obstetric ethics. RESULTS: Eighteen articles met the inclusion criteria for review. With the exception of a single case study using serial amnioinfusion, there has been no other case of survival following dialysis and transplantation documented. Liveborn babies die during the neonatal period. Counseling pregnant women about management of pregnancies complicated by bilateral renal agenesis should be guided by beneficence-based judgment informed by evidence about outcomes. CONCLUSIONS: Based on the ethical analysis of the results from this review, without experimental obstetric intervention, neonatal mortality rates will continue to be 100%. Serial amnioinfusion therefore should not be offered as treatment, but only as approved innovation or research.

Should Providers Discuss Breastfeeding With Women Living With HIV in High-Income Countries? An Ethical Analysis.

As men and women with human immunodeficiency virus (HIV) are living longer, healthier lives and having children, many questions regarding reproduction in the context of HIV arise. One question is whether breastfeeding is an option for mothers living with HIV. The established recommendation is that women living with HIV in high-income countries avoid breastfeeding. However, some women may still choose to breastfeed for a variety of personal, social, or cultural reasons. Nonmaleficence ("do no harm") must be weighed against maternal autonomy. We propose that providers caring for women in this situation are ethically justified in discussing breastfeeding as a reasonable, though inferior, option. Providers should pursue a shared decision-making approach, engaging in open conversations to learn about the mother's preferences and values, providing education about risks and benefits of various feeding options, and together with the mother formulating a plan to ensure the best possible outcome for the mother and baby.

Balancing obligations: should written information about life-sustaining treatment be neutral?

Parents who are facing decisions about life-sustaining treatment for their seriously ill or dying child are supported by their child's doctors and nurses. They also frequently seek other information sources to help them deal with the medical and ethical questions that arise. This might include written or web-based information. As part of a project involving the development of such a resource to support parents facing difficult decisions, some ethical questions emerged. Should this information be presented in a strictly neutral fashion? Is it problematic if narratives, arguments or perspectives appear to favour stopping over continuing life-sustaining treatment? Similar questions might arise with written materials about decisions for adults, or for other ethically contentious decisions. This paper explores the meaning of 'balance' in information provision, focusing particularly on written information about life-sustaining treatment for children. We contrast the norm of non-directiveness in genetic counselling with the shared decision-making model often endorsed in end-of-life care. We review evidence that parents do not find neutrality from medical professionals helpful in discussions. We argue that balance in written information must be understood in the light of the aim of the document, the most common situation in which it will be used, and any existing biases. We conclude with four important strategies for ensuring that non-neutral information is nevertheless ethically appropriate.

Perspectives of Taiwanese pastoral counselors on the use of scripture and prayer in the counseling process.

Interviews were carried out with 10 Christian pastoral counselors to explore their perspectives on the use of Scripture and prayer in the counseling process. Grounded Theory was utilized. Five main categories including a theological framework of pastoral counseling, counselors' considerations of using Scripture and prayer, preparation for Christian spiritual intervention, implications of spiritual resources, and ethical issues in the pastoral counseling process were generated. The results suggest the theological framework of pastoral counseling is crucial to the use of Scripture and prayer, and the issue of a neutral response should first be clarified for clients. Basic guidelines for ethically using Scripture and prayer for working with Christian clients are proposed for further pastoral counselor training, practice, and research.

Addressing the particular recordkeeping needs of infertile Orthodox Jewish couples considering the use of donated eggs.

Infertility counseling is a specialized field that will continue to grow in coming years as the impact of infertility and its treatment is documented more and more in terms of emotional, physical, social and life consequences. Counselors should anticipate issues that may arise in the future and assist couples in their efforts to address them. We report here on recordkeeping issues of possible future concern that should be addressed when Orthodox Jewish couples make use of donor eggs. Good medical practice values the importance of understanding the patient's individual concerns and values, including the complex psychological, sociological and cultural context in which they experience their infertility. Good counseling anticipates and addresses future problems about which patients might not currently be aware.

Ethical Considerations for Identifying Individuals in the Prodromal/Early Phase of Parkinson's Disease: A Narrative Review.

The ability to identify individuals in the prodromal phase of Parkinson's disease has improved in recent years, raising the question of whether and how those affected should be informed about the risk of future disease. Several studies investigated prognostic counselling for individuals with isolated REM sleep behavior disorder and have shown that most patients want to receive information about prognosis, but autonomy and individual preferences must be respected. However, there are still many unanswered questions about risk disclosure or early diagnosis of PD, including the impact on personal circumstances, cultural preferences and specific challenges associated with different profiles of prodromal symptoms, genetic testing or biomarker assessments. This narrative review aims to summarize the current literature on prognostic counselling and risk disclosure in PD, as well as highlight future perspectives that may emerge with the development of new biomarkers and their anticipated impact on the definition of PD.

An important goal of Parkinson's disease research is to diagnose the disease at an earlier stage, even before the typical motor symptoms appear, in the so-called 'prodromal phase'. Currently, there are no treatments available that can slow down or prevent disease progression in this early phase, even though many of the early symptoms are treatable. This raises ethical questions about whether people want to know their future risk of Parkinson's and, if so, how this information should be given. This article summarizes the current state of knowledge, but also open questions about risk disclosure in the prodromal phase of Parkinson's. Previous studies have shown that many people with early symptoms of Parkinson's would like to know their risk, but that the individual's wish to know (or not to know) must first be ascertained and respected. Future studies need to find out whether very early diagnosis of Parkinson's might have an impact on people affected, for example in terms of psychological stress or anxiety, and whether cultural background might influence attitudes to risk disclosure. Furthermore, it is expected that in the future it will be possible to make an early diagnosis of Parkinson's using specific new techniques, e.g., by testing spinal fluid. It is of utmost importance to find out if and how test results of these new techniques should be communicated to patients, even if they do not lead to direct medical treatment.

Medico-legal and ethical aspects of nasal fractures secondary to assault: do we owe a duty of care to advise patients to have a facial x-ray?

Guidelines advise that x-rays do not contribute to the clinical management of simple nasal fractures. However, in cases of simple nasal fracture secondary to assault, a facial x-ray may provide additional legal evidence should the victim wish to press charges, though there is no published guidance. We examine the ethical and medico-legal issues surrounding this controversial area.

Online counseling: a narrative and critical review of the literature.

OBJECTIVE: This article aimed to critically review the literature on online counseling. METHOD: Database and hand-searches were made using search terms and eligibility criteria, yielding a total of 123 studies. RESULTS: The review begins with what characterizes online counseling. Outcome and process research in online counseling is reviewed. Features and cyberbehaviors of online counseling such as anonymity and disinhibition, convenience, time-delay, the loss of social signaling, and writing behavior in cyberspace are discussed. Ethical behavior, professional training, client suitability, and clients' and therapists' attitudes and experiences of online counseling are reviewed. CONCLUSION: A growing body of knowledge to date is positive in showing that online counseling can have a similar impact and is capable of replicating the facilitative conditions as face-to-face encounters. A need remains for stronger empirical evidence to establish efficacy and effectiveness and to understand better the unique mediating and facilitative variables.

Ethics in pastoral care and counseling: a contemporary review of updated standards in the field.

This article reviews ethical responsibilities that must be considered when engaging in pastoral care, counseling, and psychotherapy. It discusses important contemporary issues counselors will want to contemplate in pursuing a high quality of care in their counseling practices. Examples and case studies are provided. Readers will be able to: Understand the function of ethical standards in the practice of counseling Be able to differentiate between pastoral care, pastoral counseling, and pastoral psychotherapy and their ethical implications Understand the importance of identifying one's limitations in counseling situations and how to proceed under such circumstances. Understand the need for pastoral counselors to attain the necessary credentials for practice in the area of counseling they intend to undertake. Become aware of the legal requirements when engaged in a counseling relationship.

A different approach to patients and loved ones who request "futile" treatments.

The author describes an alternative approach that care-providers may want to consider when caring for patients who request interventions that careproviders see as futile. This approach is based, in part, on findings of recent neuroimaging research. The author also provides several examples of seemingly justifiable "paternalistic omissions," taken from articles in this issue of The Journal of Clinical Ethics (JCE). The author suggests that while careproviders should always give patients and their loved ones all potentially relevant information regarding "futile" decisions, care-providers may wish to consider, paradoxically, not giving advice in these situations, when the advice is based mostly or wholly on their own moral views, based on this same, ethical rationale.