Ethical issues in oocyte banking for nonautologous use: an Ethics Committee opinion.

Ethical considerations for the banking of oocytes for nonautologous use are discussed.

[Maternal-fetal therapy: from saving the fetus towards a better life for the future child]. / Ontwikkelingen in maternale-foetale therapie.

Maternal-fetal therapy (MFT) is special because treatment of the fetus is exclusively possible through the body of another person, the pregnant woman. MFT is a broad specialty with diverse interventions. In this manuscript several examples of innovations in MFT are discussed to illustrate the shift of lifesaving interventions to interventions aiming to improve morbidity of the future child. The broadening of the scope and shift towards prenatal treatments improving morbidity result in new ethical challenges. Particularly attention is needed for counseling and (the risk of) therapeutic misconception.

Appropriate knowledge of the indications for medications in use among older individuals assisted in the Jornada Científica dos Acadêmicos de Farmácia-Bioquímica

This study aimed to identify variables associated with the appropriate recall of indications and the drug classes that represented the most unmatching medications (i.e., when the individual who used it had not reported any illness that matched its indications). Community-dwelling individuals aged ≥60 years using ≥1 medication, from Santa Cruz da Esperança-SP, Brazil, were home-interviewed. Logistic regression models were used to evaluate the association between the appropriate recall of the indications for all medications in use and the following: gender, age, education, individual income, living arrangement, self-perceived health, and medication number, administration, payment, and identification. Medications whose indications were inappropriately recalled were classified as matching or unmatching. One hundred seventeen individuals used an average of 5.1 (standard deviation, 3.3) medications. Sixty-one (52.1%) appropriately recalled all indications. The appropriate recall of all indications was negatively associated with the number of medications in use (e.g., individuals taking 5-6 medications were 25 times less likely to appropriately recall all indications than those taking 1-2). Antithrombotic, acid-related disorder and psychoanaleptic classes showed greater frequencies of unmatching than matching medications. Therefore, counseling the elderly about drug indications should focus on those using ≥3 medications and/or antithrombotic, acid-related disorder, and psychoanaleptic agents.

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.

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.

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.

The 'Converted Unbelievers': Catholics in Family Planning in French-Speaking Belgium (1947-73).

This paper looks at the journey of eleven counsellors in marital counselling centres in French-speaking Belgium, from the creation of the centres in 1953, to the 1970s, when contraception became legal, and abortion became a public issue. At the time of Humanae Vitae, groups of volunteers, working within Catholic organisations where counselling took place, began to structure their activity around Carl Rogers's ethics of client-centred therapy, placing their religious ideology in a secondary position to focus on the problems experienced by the couples and women they were receiving in the centres. These were often challenges they were experiencing themselves in their own lives. The reiteration of the Catholic orthodox view on contraception through Humanae Vitae marked a gap between the counsellors and the Church. This contribution questions the identity-related tension of Catholics working in conjugal counselling centres and the type of commitments they made to both the conjugal centres and the Church in a moment where family planning was debated both in the Church and politically.

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.

Using the 4-S Framework to Guide Conversations With Patients About CRISPR.

As patients with genetic diseases seek to have healthy biologically connected children, they will undoubtedly turn to trusted health care professionals for guidance. "Doctor, should I enter a clinical trial to edit my embryos?" is likely to become a query posed by patients with genetic illnesses. Physicians need both empathic communication skills and a framework for responding to this question. Applying the 4-S framework to gene editing can guide clinicians' responses to patients' CRISPR queries by facilitating discussion of (1) safety, (2) significance of harm to be averted, (3) impact on succeeding generations, and (4) social consequences.

Crisis Pregnancy Centers in the U.S.: Lack of Adherence to Medical and Ethical Practice Standards: A Joint Position Statement of the Society for Adolescent Health and Medicine and the North American Society for Pediatric and Adolescent Gynecology.

Crisis pregnancy centers (CPCs) attempt to dissuade pregnant people from considering abortion, often using misinformation and unethical practices. While mimicking health care clinics, CPCs provide biased, limited, and inaccurate health information, including incomplete pregnancy options counseling and unscientific sexual and reproductive health information. The centers do not provide or refer for abortion or contraception but often advertise in ways that give the appearance that they do provide these services without disclosing the biased nature and marked limitations of their services. Although individuals working in CPCs in the U.S. have First Amendment rights to free speech, their provision of misinformation may be harmful to young people and adults. The Society for Adolescent Health and Medicine and North American Society for Pediatric and Adolescent Gynecology support the following positions: (1) CPCs pose risk by failing to adhere to medical and ethical practice standards, (2) governments should only support health programs that provide accurate, comprehensive information, (3) CPCs and individuals who provide CPC services should be held to established standards of ethics and medical care, (4) schools should not outsource sexual education to CPCs or other entities that do not provide accurate and complete health information, (5) search engines and digital platforms should enforce policies against misleading advertising by CPCs, and (6) health professionals should educate themselves, and young people about CPCs and help young people identify safe, quality sources of sexual and reproductive health information and care.

How Should Surgeons Balance Transplantation Innovation With Acceptance of a Trauma Survivor's Appearance?

Clinical and ethical issues involved in counseling a patient about reconstructive surgery for a traumatic and disfiguring injury require special consideration. This article proposes prioritizing 2 considerations: (1) the influence of traumatic experiences on a survivor's cognitive processes and (2) insights into a survivor's acceptance of his or her posttrauma appearance or consent to high-risk or experimental surgery, which can be gained from dialectical behavior therapy. This article argues that these priorities should be explicitly discussed by plastic surgeons counseling patients whose appearances are altered by trauma.

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.

A Scoping Review of Ethical Considerations in Spiritual/Religious Counseling and Psychotherapy.

Four overarching themes from this scoping review were identified, namely: (a) clients' right for autonomy and self-determination; (b) cultural sensitivity; (c) practitioner competency issues; and (d) recommended guidelines for ethical practice. These themes were aligned with the moral principles that guide professional ethical practice. A competency-based model was designed based on findings to enhance counselor/clinician competencies by enhancing sensitivity to spiritual and religious sentiments, which allows greater responsiveness to the clients' needs, values and preferences.

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.

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.

How Should Physicians Counsel Patients Who Live in Food Deserts?

In this case, a physician wonders what he should do to help make nutrient-dense foods available in underserved neighborhoods. I argue that improving diets of people who live in food deserts is a complex problem at the intersection of culture, education, and economics that will require community partnerships and clinician self-education to solve.

Do Sociocultural Factors Influence Periviability Counseling and Treatment More Than Science? Lessons From Scandinavia.

All of us (doctors, parents, bioethicists, and health policy makers) think differently about premature infants who require neonatal intensive care than we do about other patients who are critically ill. In most other clinical circumstances, those that involve patients other than premature infants, our first impulse when confronted with a patient in an emergency is to do whatever we can to rescue the patient. We offer life-sustaining treatments first and ask questions later. With extremely premature infants, by contrast, we first ask questions, ponder our options, and try to develop policies about whether it is appropriate to try to save these infants. We wonder aloud whether these tiny patients are even worth saving. In most countries that have NICUs, and in many hospitals, doctors and policy makers have explicitly specified which infants ought to be offered life-sustaining treatment and which should be allowed to die. Regarding the treatment of infants who are born at the borderline of viability, there are markedly distinct approaches in Sweden, Norway, and Denmark. In each country, the prevailing approaches were developed after careful consideration of many factors, including public sentiment, professional preferences, reported outcomes, philosophical factors, and considerations of cost and cost-effectiveness. In this article, we comment on some of these considerations and the soundness of the resulting practice variations.

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.

Advising a woman with suspected Zika virus infection.

The Zika virus (ZIKV) epidemic is spreading: 67 countries are now reporting transmission, and over 2,000 cases of congenital Zika syndrome (CZS) have been confirmed. The heaviest burden has been borne by those living where poverty, poor infrastructure, and lack of access to health services are common and the penetration of Aedes aegypti is high. Because most cases are asymptomatic, the most dramatic signs of the disease appear through the CZS cases. In spite of the need for disaggregated epidemiological data to understand transmission patterns and evaluate interventions in vulnerable populations, there is no reliable count of ZIKV cases by sex and ethnicity (1).