Parents' views of benefits and limitations of receiving genetic diagnoses for their offspring.

BACKGROUND: Individuals with autism with intellectual disabilities (ID) are increasingly undergoing genetic testing, posing questions of how parents view/respond to such results. METHODS: Twenty-eight parents whose offspring had received genetic diagnoses of de novo pathogenic variants associated with autism were interviewed. RESULTS: Genetic diagnoses parents receive concerning their offspring's autism/intellectual disabilities can be 'double-edged' in several ways, having advantages, but also certain disadvantages and limitations. Benefits were medical/scientific (e.g., ending diagnostic odysseys and potentially contributing to research), emotional (e.g., relief, peace of mind and less self-blame), cognitive, social (e.g., validation and confirmation with others - it's 'not just in our head') and financial (e.g., estate planning), now and in the future (e.g., preparing for possible future symptoms, development and availability of treatment and setting realistic expectations). Limitations included a lack of medical treatments related to the genetic diagnosis, a sense of finality and heightened uncertainties which can increase anxieties (e.g., concerning additional symptoms associated with genetic diagnoses and offspring's ability to live independently in the future). Overall, parents were glad to receive the results, seeing the pros outweighing the cons. Parents responded to these tensions in various ways, having mixed feelings, recognizing the trade-offs and/or focusing on their offspring's present needs. Factors such as age of offspring at receipt of genetic diagnosis, parent's scientific background and prior views and degrees of self-blame affected these responses. CONCLUSIONS: These data, the first to examine how parents perceive genetic diagnoses received for offspring with autism and ID through whole exome/whole genome sequencing, highlight practical medical and psychological benefits as well as limitations. These findings thus have important implications for future education, engagement of families and research. Providers should be aware of these issues, to inform and assist families, who are considering such testing, about these potential pros and cons and responses.

Muslim patients in the U.S. confronting challenges regarding end-of-life and palliative care: the experiences and roles of hospital chaplains.

INTRODUCTION: Hospital chaplains aid patients confronting challenges related to palliative and end-of-life care, but relatively little is known about how chaplains view and respond to such needs among Muslim patients, and how well. METHODS: Telephone qualitative interviews of ~ 1 h each were conducted with 23 chaplains and analyzed. RESULTS: Both Muslim and non-Muslim chaplains raised issues concerning Islam among chaplains, doctors and patients, particularly challenges and misunderstandings between non-Muslim providers and Muslim patients, especially at the end-of-life, often due to a lack of knowledge of Islam, and misunderstanding and differences in perspectives. Due to broader societal Islamophobia, Muslim patients may fear or face discrimination, and thus not disclose their religion in the hospital. Confusion can arise among Muslim patients and families about what their faith permits regarding end-of-life care and pain management, and how to interpret and apply their religious beliefs in hospitals. Muslims hail from different countries, but providers may not fully grasp how these patients' cultural practices may also vary. Chaplains can help address these challenges, playing key roles in mediating tensions and working to counteract Muslim patients' fears, and express support. Yet many Muslim immigrants don't know what "chaplaincy" is and/or prefer a chaplain of their own faith. Muslim chaplains can play vital roles, having expertise that can heighten trust, and educating non-Muslim colleagues, providing in-depth understanding of Islam (e.g., highlighting how Islam is related to Judaism and Christianity) and correcting misconceptions among colleagues. Hospitals without a Muslim chaplain can draw on local community imams. CONCLUSIONS: These data highlight how mutual sets of misunderstandings, especially concerning patients' and families' decisions about end-of-life care and pain management, can emerge among Muslim patients and non-Muslim staff that chaplains can help mediate. Non-Muslim chaplains and providers should seek to learn more about Islam. Muslim patients and families may also benefit from enhanced education and awareness of chaplains' availability and scope, and of pain management and end-of-life options. These data thus have several critical implications for future practice, education, and research.

Telehealth in Orthopedic Sports Medicine: A Survey Study on Patient Satisfaction and Experience.

Background: Telehealth has seen breakthroughs in many fields of medicine, but utilization remains limited in orthopedic sports medicine. The purpose of this investigation was to compare patient satisfaction, duration of care, and overall patient experiences with telehealth and in-person clinical visits for sports-related injuries. Methods: A cross-sectional survey study was conducted at an orthopedic sports medicine clinic during the peak of the COVID-19 pandemic between March and November 2020. Anonymous electronic surveys were used to record patient responses and statistical comparisons were drawn through two-sample t-tests. Results: A total of 175 patients (82 telehealth vs. 93 in-person) consented to participate in this investigation, and all were included in the final analysis. The overall composite satisfaction score, when compared between the two groups, did not differ (p = 0.63). Duration of care was significantly longer in the 93 patients who had in-person clinical visits as compared with the 82 patients who had telehealth visits (61/93: >31 min vs. 75/82: <30 min; p < 0.001). Finally, of the 82 patients who had telehealth, 3 respondents said they were "very unlikely" and "unlikely" to request another virtual clinical visit and/or recommend this mode of health care delivery to friends or family. Of the 93 patients had in-person clinical visits, only 15 respondents stated they were uninterested in telehealth under any circumstance. Conclusion: Most patients presenting to an orthopedic sports medicine clinic are open to telehealth, recognize its utility, and believe it to be just as comparable with in-person clinical visits. Level of Evidence: IV.

"It wasn't Luck: God Wants me Here for a Reason": Perceptions of Luck Among US Patients and Its Relationships to Other Factors Among US Patients.

Patients may feel "lucky" or "unlucky" regarding disease, but questions arise about what they mean. Interviews suggest that US patients often invoke luck in trying to understand why diseases occur and treatments succeed/fail, and do so in the context of religious and spiritual beliefs, struggling with whether luck comes from God; and feeling luck is involved at various points, whether good or bad, regarding the whole or just aspects of an illness, and reflecting personal traits or single events. Social contexts can affect these views. These data have critical implications for researchers, physicians, nurses, chaplains, other providers and patients.

Hyaluronic acid as an adjunct to microfracture in the treatment of osteochondral lesions of the talus: a systematic review of randomized controlled trials.

BACKGROUND: Osteochondral lesions of the talus (OLT) are common after ankle trauma. Studies have shown that bioactive substances, such as hyaluronic acid (HA), alone, or in combination, with surgical treatment could improve cartilage regeneration and repair, but the effect of HA on patient reported outcomes is unclear. METHODS: Literature searches were performed across four databases (PubMed, SPORTDiscus, Scopus, and The Cochrane Library) for randomized controlled trials in which at least one treatment arm involved use of HA as an adjunct to microfracture to treat patients with OLT. Primary outcomes included the American Orthopaedic Foot and Ankle Society scores (AOFAS), and the Visual Analog Scale (VAS) for pain. The level of evidence and methodological quality were evaluated using the Modified Coleman Methodology Score (MCMS). RESULTS: Three randomized studies were eligible for review with a total of 132 patients (35, 40, 57 patients, respectively) and follow-up ranged from 10.5 to 25 months. Utilization of HA at the time of microfracture resulted in greater improvement in AOFAS scores compared to microfracture alone. The pooled effect size was moderate (Standardized Mean Difference [SMD] 0.45, 95% Confidence Interval [CI] 0.06, 0.84; P = .02) and between-study heterogeneity was low (I-squared = 0%). Utilization of HA during microfracture also led to greater improvement in VAS-pain scores compared to microfracture alone. The pooled effect size was very large (SMD -3.86, 95% CI -4.75, - 2.97; P < .001) and heterogeneity was moderate (I-squared = 69%). CONCLUSION: Hyaluronic acid injection as an adjunct to arthroscopic MF in OLT provides clinically important improvements in function and pain at short-term follow-up compared to MF alone. Future longer-term follow-up studies are warranted to investigate the durability of MF with HA for treatment of OLT.

Needs to address clinicians' moral distress in treating unvaccinated COVID-19 patients.

BACKGROUND: Moral dilemmas have arisen concerning whether physicians and other providers should treat patients who have declined COVID vaccination and are now sick with this disease. Several ethicists have argued that clinicians have obligations to treat such patients, yet providing care to these patients has distressed clinicians, who have at times declined to do so. Critical questions thus emerge regarding how best to proceed. MAIN BODY: Providers face moral tensions: whether to place the benefits to an unvaccinated patient over their duties to protect themselves and their families, staff and other patients, and goals of working collaboratively with patients. Clinicians' duties to treat such patients arguably outweigh claims otherwise, but these obligations are creating moral conflict and distress for providers. Moral distress has been associated with burnout, post-traumatic stress disorder, and interpersonal and work difficulties. Given ongoing vaccine refusals, these problems are unlikely to disappear in the foreseeable future. Society has obligations to address this moral distress due to principles of reciprocity, and implicit social contracts, as part of which physicians risk their lives in caring for patients for the good of society as a whole. Responses are thus urgently needed at several levels: by hospitals, medical schools, professional societies, governments, media, providers and patients. Medical training on professionalism should address these stresses, probing why doctors have duties to treat these patients, but also how moral conflicts can ensue, and how best to address these tensions. Governments and institutions should thus alter relevant policies and devote more resources to addressing clinicians' psychological strains. Institutions should also improve organizational culture. Public health organizations and the media described clinicians, earlier in the pandemic, as heroes, committed to treating COVID patients. This narrative should now be changed to highlight the strains that unvaccinated patients cause-endangering hospital staff and others. CONCLUSIONS: Unvaccinated COVID patients should receive care, but multi-level strategies, involving enhanced policies, education and practice are vital to alleviate ensuing moral distress, and thus aid these clinicians and their patients. Ethical arguments that providers must treat these patients have not considered these obligations' effects on clinicians, but should do so.

Typologies and Meanings of Prayer Among Patients.

Religion often aids patients, but critical questions arise concerning how patients approach issues regarding prayer. In-depth interviews suggest 12 key patient decisions and aspects of prayer-who prays, to whom (e.g., explicitly to "God" or not), for whom (for self or others), for what (e.g., for symptom reduction), when (regularly or only during crisis), where, what to say (pre-specified language or spontaneous), how consciously planned or not, with what expectations and outcomes, what to call it, and in what social contexts (e.g., how others view one's prayers). These data have implications for future research, clinical practice of physicians, nurses, chaplains, and other allied healthcare providers, and patient education.

Experiment on identical siblings separated at birth: ethical implications for researchers, universities, and archives today.

Several films, including Three Identical Strangers, examined ethical problems in an experiment that involved identical siblings who were adopted as infants and separated into different families to examine the effects of nature versus nurture. The study was primarily designed and directed by Dr Peter Neubauer. The experiment, conducted in the 1960's through 1980's, serves as an important cautionary case study, raising several critical and ongoing ethical issues faced by researchers, universities and archives today. The organisation coordinating the study donated the research records to Yale University under the condition that they remain sealed until 2065, and has impeded study participants' full access to research material. This case raises questions of what investigators, their descendants, research ethics committees or institutional review boards (IRBs), universities and archives should do with study records when researchers retire or die-whether universities should accept researchers' donations of archival records that may contain patient or participant data, and if so, under what conditions. This study also poses crucial issues for IRBs-for example, whether researchers themselves or their designates should control all access to study records, particularly if controversy or lawsuits ensue. These questions will become increasingly crucial since the amount of research has burgeoned over recent decades, and investigators, on retirement or death, may want to donate their archives to universities. This experiment thus highlights ethical questions to which researchers, IRBs, universities, healthcare institutions, archivists and libraries should attend.

HIV prevention research and COVID-19: putting ethics guidance to the test.

BACKGROUND: Critical public health measures implemented to mitigate the spread of the novel coronavirus disease (COVID-19) pandemic have disrupted health research worldwide, including HIV prevention research. While general guidance has been issued for the responsible conduct of research in these challenging circumstances, the contours of the dueling COVID-19 and HIV/AIDS pandemics raise some critical ethical issues for HIV prevention research. In this paper, we use the recently updated HIV Prevention Trials Network (HPTN) Ethics Guidance Document (EGD) to situate and analyze key ethical challenges related to the conduct of HIV prevention research during the COVID-19 pandemic as well as identify potential areas for refinement of the guidance document based on this unprecedented state of affairs. MAIN BODY: Necessary actions taken for HIV prevention research studies due to the COVID-19 pandemic involve an array of ethical issues including those related to: (1) risk mitigation; (2) behavior change; (3) compounding vulnerability; (4) community engagement; (5) trial reopening; and 6) shifting research priorities. CONCLUSIONS: In the context of the dueling HIV and COVID-19 global pandemics, research teams and sponsors must be nimble in responding to the rapidly changing environment by being sensitive to the associated ethical issues. The HTPN EGD provides a rich set of tools to help identify, analyze and address many of these issues. At the same time, future refinements of the HPTN EGD and other research ethics guidance could be strengthened by providing explicit advice regarding the ethical issues associated with disrupted research and the reopening of studies. In addition, additional consideration should be given to appropriately balancing domains of risk (e.g., physical versus social), addressing the vulnerability of research staff and community partners, and responding to un-anticipatable ancillary care needs of participants and communities. Appropriately addressing these issues will necessitate conceptual work, which would benefit from the careful documentation of the actual ethical issues encountered in research, the strategies implemented to overcome them, and their success in doing so. Throughout all of these efforts, it is critical to remember that the HIV pandemic not be forgotten in the rush to deal with the COVID-19 pandemic.

Editorial Commentary: Suspensory Fixation of Displaced Tibial Posterior Cruciate Ligament Avulsions: A Novel Application of a Familiar Technique.

Isolated tibial posterior cruciate ligament avulsion fractures, although rare, are becoming increasingly common in regions of the world with frequent 2-wheel motor vehicle accidents. Arthroscopic-assisted suture fixation has become a popular fixation method for these injuries. Suspensory metal button fixation of tibial posterior cruciate ligament avulsion fractures, although commonly used for other applications, has until recently been limited to isolated reports of a few patients.

Roles of genetics and blood type in clinical responses to COVID-19: ethical and policy concerns.

Recently, several genetic variants have been associated with increased or decreased risks of becoming infected and/or seriously ill with COVID-19-not only offering important potential medical benefits but also posing critical ethical questions. These genetic factors, some of which are associated with blood type, may account for variations in observed responses to COVID-19. Hence, assessments of these genetic differences and blood type could provide possible benefits in gauging patients' risks of disease acquisition and prioritising allocation of interventions or vaccines, if supplies are limited. The media has widely reported these findings, and people online are now discussing their blood type and its possible effects on their COVID-19 risks, but several ethical concerns arise. Individuals possessing genetic variants or blood types associated with lower risk may engage in 'risk compensation', erroneously assuming that they can protect themselves less, and hence less frequently wearing masks or washing hands. Given the ongoing COVID-19 pandemic, many physicians, hospitals, patients, policymakers, members of the public, testing companies and others may well consider these factors in making critical prevention/treatment decisions. Researchers, providers and others should thus begin to address these concerns. Increased awareness and education aimed at providers, patients, family members, public health officials, political leaders and the public-at-large are critical. Attitudinal research is vital to examine how providers, patients and the public understand these findings. Ethical frameworks and guidelines are needed, addressing whether such genetic information should be incorporated into decisions regarding allocation of scarce resources-including hospital and ICU beds, ventilators, medications (eg, remdesivir) and vaccines-and if so, how.

Ethical Challenges Arising in the COVID-19 Pandemic: An Overview from the Association of Bioethics Program Directors (ABPD) Task Force.

The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities.

Bioethics of Translating Limited Evidence into Clinical Practice: Case Study of the Cerebroplacental Ratio.

Bioethics can help address the challenges of translating research into clinical practice in the twenty-first century. The cerebroplacental ratio in obstetrical ultrasound provides a case study of how bioethical principles can help advance practical approaches when evidence is limited. This can help clinicians use cerebroplacental ratio when additional risk factors are present in critical cases that warrant increased surveillance; disclose limited information appropriately; allocate resources; and weigh benefits against risks. Balancing the key ethical principles of respect for autonomy, beneficence, non-maleficence, and justice within this context illuminates how bioethics can assist health care providers as well as help set a research agenda. Such analyses are essential to improving clinical care, given the rapid pace at which medicine is evolving.

Evaluation of the cost and effectiveness of diverse recruitment methods for a genetic screening study.

PURPOSE: Recruitment of participants from diverse backgrounds is crucial to the generalizability of genetic research, but has proven challenging. We retrospectively evaluated recruitment methods used for a study on return of genetic results. METHODS: The costs of study design, development, and participant enrollment were calculated, and the characteristics of the participants enrolled through the seven recruitment methods were examined. RESULTS: A total of 1118 participants provided consent, a blood sample, and questionnaire data. The estimated cost across recruitment methods ranged from $579 to $1666 per participant and required a large recruitment team. Recruitment methods using flyers and staff networks were the most cost-efficient and resulted in the highest completion rate. Targeted sampling that emphasized the importance of Latino/a participation, utilization of translated materials, and in-person recruitments contributed to enrolling a demographically diverse sample. CONCLUSIONS: Although all methods were deployed in the same hospital or neighborhood and shared the same staff, each recruitment method was different in terms of cost and characteristics of the enrolled participants, suggesting the importance of carefully choosing the recruitment methods based on the desired composition of the final study sample. This analysis provides information about the effectiveness and cost of different methods to recruit adults for genetic research.

Correction: Evaluation of the cost and effectiveness of diverse recruitment methods for a genetic screening study.

The original version of this Article contained an error in the undergraduate degree awarded to the author Ian Halim, which was incorrectly given as BS. This has now been corrected to BA in both the PDF and HTML versions of the Article.

Impediments to communication and relationships between infertility care providers and patients.

BACKGROUND: Infertility patients generally see provider-patient communication and relationships as important, but as often insufficient, raising critical questions regarding why these gaps persist, and how they might best be addressed. METHODS: Semi-structured interviews of approximately one hour each were conducted with 37 ART providers and patients (17 physicians, 10 other health providers, and 10 patients) and were thematically analyzed. RESULTS: Patients see clinicians' interactions as ranging widely from good to bad, related to several specific barriers and factors. Patients and providers may differ in their physical and emotional experiences, expectations concerning treatment outcomes and uncertainties, and time frames and finances, generating dynamic processes and tensions. Characteristics of particular providers, clinics and patients can also vary. Infertility patients tend to find only one outcome acceptable - a "take home baby" - rather than partial success, as is the case with many other diseases. Yet most IVF cycles fail. Many patients must pay considerable out-of-pocket expenses for infertility treatment, exacerbating disappointments and frustrations. Providers often work in competitive, entrepreneurial markets, and "hype" their potential success. After treatment failures, providers may feel guilty and withdraw from patients. Yet these behaviors can antagonize patients more than physicians realize, aggravating patient stresses. Several providers described how they understood patients' needs and perceptions more fully only after becoming infertility patients themselves. Interactions with not only physicians, but other providers (e.g., nurses and staff) can play key roles. Patients may be willing to understand these impediments, but providers often communicate these obstacles and reasons poorly or not at all, furthering tensions. CONCLUSIONS: These data, the first to examine several critical aspects of challenges that infertility providers and patients face in communication and relationships, suggest that several key dynamic processes and factors may be involved, and need to be addressed. While prior research has shown that infertility patients value, but often feel disappointed in relationships with clinicians, the present data highlight several specific impediments, and thus have critical implications for future practice, research, guidelines and education.

Addressing ethical challenges in HIV prevention research with people who inject drugs.

Despite recent advances in HIV prevention and treatment, high HIV incidence persists among people who inject drugs (PWID). Difficult legal and political environments and lack of services for PWID likely contribute to high HIV incidence. Some advocates question whether any HIV prevention research is ethically justified in settings where healthcare system fails to provide basic services to PWID and where implementation of research findings is fraught with political barriers. Ethical challenges in research with PWID include concern about whether research evidence will be translated into practice; concerns that research might exacerbate background risks; and ethical challenges regarding the standard of HIV prevention in research. While these questions arise in other research settings, for research with PWID, these questions are especially controversial. This paper analyses four ethical questions in determining whether research could be ethically acceptable: (1) Can researchers ensure that research does not add to the burden of social harms and poor health experienced by PWID? (2) Should research be conducted in settings where it is uncertain whether research findings will be translated into practice? (3) When best practices in prevention and care are not locally available, what standard of care and prevention is ethically appropriate? (4) Does the conduct of research in settings with oppressive policies constitute complicity? We outline specific criteria to address these four ethical challenges. We also urge researchers to join the call to action for policy change to provide proven safe and effective HIV prevention and harm reduction interventions for PWID around the world.

Challenges, Dilemmas and Factors Involved in PGD Decision-Making: Providers' and Patients' Views, Experiences and Decisions.

Providers and patients are considering and pursuing PGD for ever-more conditions, but questions arise concerning how they make, view and experience these decisions, and what challenges they may face. Thirty-seven in-depth semi-structured interviews were conducted (with 27 IVF providers and 10 patients). Patients and providers struggled with challenges and dilemmas about whether to pursue PGD in specific cases, and how to decide. Respondents varied in how they viewed, experienced and made these choices, and for which conditions to pursue PGD (from lethal, childhood-onset conditions to milder, treatable, or adult-onset disorders). Several factors were involved, including differences in gene penetrance, predictability, and phenotypic expression, and disease severity, age of onset, treatability, stigma and degree of disability. Providers and patients face questions regarding possibilities of screening for more than one condition in one set of embryos, and limitations of PGD (e.g., inaccurate results). Characteristics of providers (e.g., amount of PGD experience, understandings of genetics, and use of genetic counselors), and of patients (e.g., related to broader moral and social attitudes) can also affect these decisions. These data, the first to examine several key questions concerning PGD, suggest that providers and patients confront several dilemmas. These findings have critical implications for future practice, guidelines, education and research.