Professionally responsible management of the ethical and social challenges of antenatal screening and diagnosis of ß-thalassemia in a high-risk population.

Thalassemias are among the most frequent genetic disorders worldwide. They are an important social and economic strain in high-risk populations. The benefit of ß-thalassemia screening programs is growing evident but the capacity to diagnose fetal ß-thalassemia exceeds the treatment possibilities and even when treatment before birth becomes feasible, difficult decisions about the relative risks will remain. This paper can be of practical and ethically justified aid when counseling women about screening, diagnosis, and treatment of ß-thalassemia. It takes in consideration various social challenges, medical issues such as antenatal screening, preimplantation genetic diagnosis, prenatal diagnosis, non-invasive prenatal testing and prenatal therapy. We also describe the Sardinian experience in applying and promoting high-risk population screening and diagnosis programs and future trends in the management of ß-thalassemia.

The Pediatrician's Moral Obligation to Counsel Directively Against Youth Tackle Football.

In this issue of The Journal of Clinical Ethics, Professor Ruth Tallman argues that pediatricians ought to support adolescent football players in their athletic goals. She does not deny that doing so means "helping children hurt themselves"; rather she argues that this would be consistent with a shared decision-making model in which both the physician and the patient seek to promote the patient's well-being in light of the patient's own goals. I argue that this ignores the role of the parents, meaning that Tallman is suggesting "helping parents allow their children to hurt themselves." As a general pediatrician, I would classify this as child neglect, if not downright child abuse. I argue that pediatricians should counsel directively against youth tackle football, employ a deliberative approach to shared decision making within the triadic doctor-patient-parent relationship, and support youth sport policies that seek to reduce traumatic brain injury by advocating for flag football, by prohibiting checking in boys' ice hockey, and by minimizing heading the ball in soccer below a certain age.

Professionally responsible counseling about birth location during the COVID-19 pandemic.

If the worries about the coronavirus disease 2019 (COVID-19) pandemic are not already enough, some pregnant women have been questioning whether the hospital is a safe or safe enough place to deliver their babies and therefore whether they should deliver out-of-hospital during the pandemic. In the United States, planned out-of-hospital births are associated with significantly increased risks of neonatal morbidity and death. In addition, there are obstetric emergencies during out-of-hospital births that can lead to adverse outcomes, partly because of the delay in transporting the woman to the hospital. In other countries with well-integrated obstetric services and well-trained midwives, the differences in outcomes of planned hospital birth and planned home birth are smaller. Women are empowered to make informed decisions when the obstetrician makes ethically justified recommendations, which is known as directive counseling. Recommendations are ethically justified when the outcomes of one form of management is clinically superior to another. The outcomes of morbidity and mortality and of infection control and prevention of planned hospital birth are clinically superior to those of out-of-hospital birth. The obstetrician therefore should recommend planned hospital birth and recommend against planned out-of-hospital birth during the COVID-19 pandemic. The COVID-19 pandemic has increased stress levels for all patients and even more so for pregnant patients and their families. The response in this difficult time should be to mitigate this stress and empower women to make informed decisions by routinely providing counseling that is evidence-based and directive.

Rates of Complications and Secondary Surgeries of Mini-Open Carpal Tunnel Release.

Background: The purpose of this study was to determine the rates and types of complications and secondary surgeries after mini-open carpal tunnel release. Methods: A retrospective cohort study was performed for 1,328 patients who underwent mini-open carpal tunnel release from August 2008 to July 2013. Patients were excluded for acute trauma, the index procedure being revision surgery, neoplasm, age less than 18 years, incomplete records, and postoperative follow-up less than 1 month, which yielded 904 patients who underwent 1,144 surgeries. Results: Of 1,144 carpal tunnel releases performed, 14 (1.2%) were noted to have a complication at final follow-up, with no cases of major nerve or vessel injury. Fourteen patients (1.2%) underwent secondary surgery, including 11 cases for persistent or recurrent carpal tunnel syndrome and 3 cases for infection or hematoma. Chronic kidney disease was associated with an increased risk of complication. Diabetes mellitus, chronic kidney disease, and cervical radiculopathy were associated with an increased risk of secondary surgery. Conclusions: The short-term complication and secondary surgery rates of mini-open carpal tunnel release are low. Patients with diabetes mellitus, chronic kidney disease, and cervical radiculopathy should be counseled regarding risks of complication and secondary surgery.

Counseling Women on Long Acting Reversible Contraceptive (LARC) Use While Maintaining Reproductive Justice.

[Full article available at http://rimed.org/rimedicaljournal-2017-10.asp].

'Hey everybody, don't get pregnant': Zika, WHO and an ethical framework for advising.

WHO recently issued new guidance on the prevention of sexual transmission of Zika virus. The updated guidance states that '[c]ountry health programmes should ensure that… [i]n order to prevent adverse pregnancy and fetal outcomes, men and women of reproductive age, living in areas where local transmission of Zika virus is known to occur, be correctly informed and oriented to consider delaying pregnancy'. While the media has reported this advice as WHO telling couples in Zika-affected regions to avoid pregnancy, WHO states that they are not doing that. In an interview with the New York Times, a spokesperson from WHO stated, 'it's important to understand that this is not WHO saying, "Hey everybody, don't get pregnant." It's that they should be advised about this, so they themselves can make the final decision'. In this statement, the WHO's spokesperson distinguishes between actively directing individuals to delay pregnancy and advising them, which is portrayed as a merely informative act that facilitates but does not direct an individual's final decision. This paper proposes that advising should not be understood as a purely informational and non-directive act. The choices that agencies make in what advice to offer and to whom to offer the advice are ethical choices with practical implications. We will thus lay out a framework for considering the ethical issues that arise in the context of advising and demonstrate how it can be used to evaluate the WHO guidance.

Ethical Dimensions of Counseling about the Clinical Management of Gestational Diabetes.

Gestational diabetes is associated with both short- and long-term adverse outcomes for the mother and the child. Glycemic control to improve perinatal outcomes is consistent with the best available evidence and should be recommended. The evidence for interventions to improve long-term outcomes is less robust. Therefore, patients need to be informed of the data, have the limitations explained, and be supported in decision-making. Theoretical risks do not need to be revealed to patients. Enthusiasm for interventions not supported by evidence should not be promoted. This article provides an ethical framework for counseling patients about the management of gestational diabetes.

A case report of embryo donation: ethical and clinical implications for psychologists.

Third-party reproduction is a growing field, and an increasing body of literature considers the ethics of embryo donation. Due to the psychosocial complexities that generally accompany the donation and/or use of donor embryos, psychologists can play a pivotal role in these specialised fertility cases. While laws in the USA are in place to regulate the medical procedures involved in embryo donation, only unenforceable guidelines exist for psychologists specialising in fertility cases. The presentation of this case study aims to: (1) clarify the ethical concerns that fertility psychologists should consider in similar situations by assessing whether American Society of Reproductive Medicine (ASRM) and the American Psychological Association (APA) guidelines compete or complement one another within this case of embryo donation and (2) consider the interests, obligations and rights of all parties involved. Several principles, standards and guidelines that must be considered are described. Overall, the APA Ethics Code and the ASRM Guidelines appear to complement one another for most aspects of this case. Fertility psychologists should consider the clinical implications of the interests, rights and duties of all involved parties, including themselves.

Ethical and Sociocultural Aspects of Sexual Function and Dysfunction in Both Sexes.

AIMS: This study aimed to highlight the salient sociocultural factors contributing to sexual health and dysfunction and to offer recommendations for culturally sensitive clinical management and research as well for an ethically sound sexual health care, counseling and medical decision-making. BACKGROUND: There are limited data on the impact of sociocultural factors on male and female sexual function as well as on ethical principles to follow when clinical care falls outside of traditional realms of medically indicated interventions. METHODS: This study reviewed the current literature on sociocultural and ethical considerations with regard to male and female sexual dysfunction as well as cultural and cosmetic female and male genital modification procedures. RESULTS: It is recommended that clinicians evaluate their patients and their partners in the context of culture and assess distressing sexual symptoms regardless of whether they are a recognized dysfunction. Both clinicians and researchers should develop culturally sensitive assessment skills and instruments. There are a number of practices with complex ethical issues (eg, female genital cutting, female and male cosmetic genital surgery). Future International Committee of Sexual Medicine meetings should seek to develop guidelines and associated recommendations for a separate, broader chapter on ethics.

Pediatric obstetrical ethics: Medical decision-making by, with, and for pregnant early adolescents.

Pregnancy in an early adolescent carries with it specific ethical considerations, in some ways different from pregnancy in an adult and from medical care of a non-pregnant adolescent. Obstetrical ethics emphasizes the right of the patient to autonomy and bodily integrity, including the right to refuse medical intervention. Pediatric ethics recognizes the right of parents, within limits, to make medical decisions for their children, and the right of a child to receive medical or surgical interventions likely to be of benefit to her, sometimes over her own objections. As the child gets older, and particularly during the years of adolescence, there is also a recognition of the right to an increasingly prominent role in decisions about her own healthcare. Pediatric obstetrical ethics, referring to ethical decisions made by, with, and for pregnant early adolescents, represents the intersection of these different cultures. Principles and approaches from both obstetrical and pediatric ethics, as well as a unified understanding of rights, obligations, and practical considerations, will be needed.

Responding to refusal of recommended cesarean section: Promoting good parenting.

Consideration of what a "good parent" would do in controversial perinatal cases has been largely absent from to ethics literature. This article argues when a cesarean section is required to prevent death or serious disability for a fetus, the pregnant woman has an ethical (although not legal) obligation to undergo that procedure even when she has concerns or conflicting commitments. Further, a clinician may be justified in using persuasive counseling when there is grave harm at stake that the patient has a moral obligation to prevent. This conclusion is tested by exploring its implications in several other analogous controversial contexts.

[Expansion of HIV counseling and testing strategies: technical challenges and ethical-political tensions]. / Ampliación de las estrategias de consejería y prueba del VIH: desafíos técnicos y tensiones ético-políticas.

Incentives to provide universal access to antiretroviral therapy in order to control the HIV/AIDS epidemic also encouraged the diversification of HIV testing strategies, as demonstrated by the simultaneous existence of Voluntary Counseling and Testing (VCT) and Provider-Initiated HIV Testing and Counseling (PITC). This paper analyzes the concepts, principles and implementation of the VCT and PITC models regarding counseling, confidentiality and informed consent in Brazil and other countries, based on a literature review of works in the Lilacs, Medline, Sociological Abstracts and Cochrane databases published between 2000 and 2013. According to the literature, PITC increases rates of testing in comparison with VCT, but reduces sexual and reproductive rights and the autonomy of users. These findings suggest technical challenges and ethical tensions between the paradigm of exceptionalism and the normalization of HIV testing. The necessity to reconcile increased access to HIV tests with the local capacity to offer comprehensive care for people living with HIV/AIDS is highlighted. It is recommended that interdisciplinary studies about the social effects of VCT and PITC be amplified.

A moving line in the sand: a review of obstetric management surrounding periviability.

Periviable birth poses numerous clinical and ethical challenges for the practicing clinician. We review the data surrounding the administration of corticosteroids for fetal lung maturity, antibiotics in the case of preterm premature rupture of membranes, magnesium sulfate for cerebral palsy prophylaxis, fetal monitoring, and cesarean delivery. The ethical complexities of patient counseling are also reviewed with a recommendation toward shared decision making between patient and physician.

Directive counsel and morally controversial medical decision-making: findings from two national surveys of primary care physicians.

BACKGROUND: Because of the potential to unduly influence patients' decisions, some ethicists counsel physicians to be nondirective when negotiating morally controversial medical decisions. OBJECTIVE: To determine whether primary care providers (PCPs) are less likely to endorse directive counsel for morally controversial medical decisions than for typical ones and to identify predictors of endorsing directive counsel in such situations. DESIGN AND PARTICIPANTS: Surveys were mailed to two separate national samples of practicing primary care physicians. Survey 1 was conducted from 2009 to 2010 on 1,504 PCPs; Survey 2 was conducted from 2010 to 2011 on 1,058 PCPs. MAIN MEASURES: Survey 1: After randomization, half of the PCPs were asked if physicians should encourage patients to make the decision that the physician believes is best (directive counsel) with respect to "typical" medical decisions and half were asked the same question with respect to "morally controversial" medical decisions. Survey 2: After reading a vignette in which a patient asked for palliative sedation to unconsciousness, PCPs were asked whether it would be appropriate for the patient's physician to encourage the patient to make the decision the physician believes is best. KEY RESULTS: Of 1,427 eligible physicians, 896 responded to Survey 1 (63 %). Physicians asked about morally controversial decisions were half as likely (35 % vs. 65 % for typical decisions, p < 0.001) to endorse directive counsel. Of 986 eligible physicians, 600 responded to Survey 2 (61 %). Two in five physicians (41 %) endorsed directive counsel after reading a vignette describing a patient requesting palliative sedation to unconsciousness; these physicians tended to be male and more religious. CONCLUSIONS: PCPs are less likely to endorse directive counsel when negotiating morally controversial medical decisions. Male physicians and those who are more religious are more likely to endorse directive counsel in these situations.