Hasil untuk "Medical philosophy. Medical ethics"

Sietske A. L. van Till, Sybren Sybesma, Hilgo Bruining et al.

Abstract Background Disorder-related variants in the STXBP1 gene are increasingly detected in children with severe developmental disorders. It is commonly acknowledged that developmental disorders significantly impact family life, but little is known about the day-to-day experiences of caregivers living with children with STXBP1-related disorders (STXBP1-RD). This knowledge gap may hinder researchers and care professionals from aligning research activities, care, and support with the perspectives of parents. Methods We conducted a semi-structured interview study to gain a better understanding of the impact of having a child with STXBP1-RD on daily family life. Interviews were audio-recorded, transcribed, and analyzed thematically. We developed an ‘analytical framework based on verbs’, as verbs signify action, to present our results on the experiences of parents in everyday life. Results We conducted 16 interviews with 21 parents of children with STXBP1-RD (2 to 18 years old), living in the Netherlands. The respondents described their caregiving responsibilities as extremely intense and demanding. They reported being constantly occupied with caring for their child, and expressed a feeling of always being ‘switched on’. Parents’ experiences are described using the following five verbs: (1) caring for their child, (2) recognizing their child’s needs and having their child’s needs recognized, (3) searching for answers and suitable care, (4) balancing delivering care while preserving other domains of life, and (5) coping with emotional impacts. Conclusions This study shows how parenting a child with STXBP1-RD involves continuous engagement with both child-related care responsibilities and other activities, such as arranging suitable care and coping with emotional impacts. The accumulation of these responsibilities and challenges significantly impacts the everyday lives of the entire family. To support STXBP1 patient families, a broad approach is needed, focusing not only on developing new medical treatments, but also on improving other therapies (e.g., speech therapy or physiotherapy) and providing social support for the entire family, including emotional support, assistance with administrative tasks, and improved information provision after diagnosis.

W. H. A. van Poecke, N. E. F. Hooi, T. K. Mossel et al.

Abstract Introduction Adalimumab is a monoclonal antibody that is used to treat autoimmune and inflammatory diseases. Biosimilars for adalimumab, including Hyrimoz, have been developed. We aimed to evaluate the effectiveness and adverse effects of Hyrimoz after switching. Methods The cohort consisted of patients treated with adalimumab at the Clinical Immunology Outpatient Department of the Erasmus Medical Center between February 2021 and February 2023. Data were collected through electronic patient files and questionnaires sent to the patients. The primary outcome was the number of flares after switching to Hyrimoz, compared to a similar period before the switch. The secondary outcomes were reported adverse effects and patient experience using Hyrimoz. Results A total of 185 patients were eligible for inclusion. There was no significant difference in the occurrence of flares between Humira and Hyrimoz (P = 0.456). Forty-six of the 185 patients reported adverse effects (24.9%). A total of 25/185 (13.5%) patients reported pain during injection, which was the most frequently reported adverse effect. During the course of this study, 60/185 (32.4%) patients discontinued Hyrimoz treatment because of flares (n = 17 [9.2%]), adverse effects (n = 27 [14.6%]), or more subjective complaints (n = 15 [8.1%]) related to the underlying disease. One patient discontinued treatment because of inactive disease. Conclusion The number of flares before and after switching to Hyrimoz was comparable. However, adverse effects and increased subjective complaints have been reported after switching to this new biosimilar.

Mufeed Taha, Haluk Gümüş

Stroke continues to be a major global cause of disability and death, but recent advancements are reshaping its management. In 2025, research has highlighted the promising role of uric acid as a cerebroprotective agent in acute ischemic stroke, with encouraging preclinical and early human data. Ultrasound-enhanced thrombolysis, or sonothrombolysis, is emerging as an innovative technique to improve clot breakdown safely. Rehabilitation is also evolving with virtual reality technologies and assistive devices like the Sixth Finger, which enhance recovery and daily functioning. On the preventive front, retinal vascular imaging is proving valuable in predicting stroke risk non-invasively, while simple lifestyle habits, including routine flossing, have shown significant protective effects. Additionally, growing evidence links environmental factors, such as microplastic accumulation, to cerebrovascular disease, opening new avenues for research and public health measures. Together, these advances reflect a shift toward more personalized, integrated, and preventive stroke care, offering hope for improved patient outcomes and reduced global burden.

Thiago Rocha da Cunha, Dayana Beatriz Oliveira, Alexandre Roberto Dhein et al.

Este ensayo analiza la relación entre el vegetarianismo y las virtudes ecológicas en medio de la crisis socioambiental global. Después de revisar la literatura sobre ética alimentaria vegetariana, y basándose en referencias de la Bioética Crítica, argumenta que el vegetarianismo puede considerarse una manifestación concreta de virtudes ecológicas. Destaca la necesidad de evitar visiones individualistas e idealistas de este enfoque, enfatizando la importancia de integrarlas en perspectivas críticas y transformadoras. Destaca la relevancia de abordar cuestiones como la instrumentalización de los discursos éticos y la persistencia de formas de colonialidad en el debate sobre el vegetarianismo. Concluye que el cultivo de virtudes ecológicas mediante la promoción de dietas vegetarianas puede desempeñar un papel significativo en la lucha contra la crisis socioambiental, siempre y cuando estas virtudes se incorporen en perspectivas críticas y politizadas que desafíen las dinámicas capitalistas y coloniales que operan en el régimen alimentario global.

Antoine Boudreau LeBlanc, Bryn Williams-Jones

ABSTRACTFor Van Rensselaer Potter (1911–2001), Global Bio-Ethics is about building on the legacy of Aldo Leopold (1887–1948), one of the most notable forest managers of the twentieth century who brought to light the importance of pragmatism in the sciences and showed us a new way to proceed with environmental ethics. Following Richard Huxtable and Jonathan Ives's methodological 'Framework for Empirical Bioethics Research Projects' called 'Mapping, framing, shaping,' published in BMC Medicine Ethics (2019)), we propose operationalizing a framework for Global Bio-Ethics by hybridizing approaches in empirical bioethics and ecosystem management. We explain this framework using the metaphor of forest management. This mixed approach is articulated through three phases: (1) mapping the “landscape” to build a working theory, (2) framing the “scene” to prepare the fieldwork, and (3) shaping bioethics “tools” to stimulate cooperation. Applying this methodology, an adaptive management cycle is outlined to help ensure that political processes are sustainable and socially acceptable, still based on strategic and ethical thinking, but also capable of reshaping failing policies.

Miguel Kottow Lang

La bioética nace en Georgetown con la intención de reforzar la autonomía del paciente frente a una medicina intervencionista aplicada con tradicionales criterios paternalistas. El consentimiento informado es elaborado como la puesta en práctica de la autonomía “a secas” que, en la despersonalización que sufre la medicina medicalizada y mercantilizada, ha sido poco efectiva. En recientes decenios, con fuerte influencia feminista, se desarrolla la autonomía relacional, enfatizando que el ejercicio de decisiones autónomas depende de contextos sociales, criterios culturales, identidad biográfica, además de estar severamente limitada por condicionantes socioeconómicos negativos. Proclamar autonomía como un principio ha tenido escaso impacto en prácticas sociales, incluyendo la medicina. Aquí se propone fomentar la autonomía relacional mediante el recurso a las éticas relacionales: ética del reconocimiento (Hegel/ Honneth), ética de la resonancia (Rosa) y ética de la responsividad (Waldenfels). Complementariamente libertad individual y relacionalidad ética dependen de cultivar el cuidado de sí (Foucault).

Maroun Badr

La nueva ley de bioética en Francia, propuesta en 2019 y aprobada por la Asamblea Nacional el 29 de junio de 2021, introduce en su artículo primero, relativo a las Tecnologías de Reproducción Artificial (ART por sus siglas en inglés), modificaciones al artículo L. 2141-2 y L. 2141-3 de la ley número 2011-814 de 7 de julio de 2011 relativa a la bioética. Abre así el camino a “cualquier pareja formada por un hombre o una mujer o por dos mujeres o cualquier mujer soltera”. Como resultado, se rompe el vínculo entre el derecho y la bioética. Mientras que el derecho debe proteger el interés individual, la bioética le recuerda al derecho que también debe protegerse el bien común. De ahí las siguientes interrogantes que surgen a raíz de esta nueva ley de bioética: ¿las ART son un derecho para todos? ¿Es legítimo reivindicarlo en nombre de la igualdad? ¿Qué pasa con la justicia? En este artículo me gustaría abordar el tema desde un punto de vista biojurídico, situando el problema en el marco de la filosofía del derecho.

María Oliva Sirgo Álvarez

El presente artículo analiza el envejecimiento activo de las mujeres mayores y la doble discriminación que sufren tanto por encontrarse en su etapa de envejecimiento, como por el hecho de ser mujeres. Existen grandes desigualdades entre hombres y mujeres con respecto a la provisión de cuidados a otras personas y en el desempeño de las tareas domésticas. El envejecimiento activo y el envejecimiento saludable es menor en las mujeres mayores, debido a su dedicación familiar, las barreras culturales, la falta de apoyos sociales y la baja autoestima.

Shannon Lee

Photo by Kelley Sikkema on Unsplash  INTRODUCTION Patients seeking abortion services in the United States face several problems, including factual inaccuracies about the procedure, the stigma surrounding the procedure, and barriers to quality care across the country. The problems surrounding abortion pose a threat to patient autonomy and beneficence—ethical principles that are usually upheld in medicine. Abortion doulas can enhance patient autonomy, improve the quality of medical care, help women talk through their emotions or the associated stigma, and provide other benefits that can address the problems surrounding abortion. Their role ranges from discussing emotional decisions and answering patient questions before the procedure, to simply holding their hand in the recovery room. In this paper, I propose that the use of abortion doulas may help address some of the problems surrounding abortion by mitigating factual inaccuracies, stigma, and barriers to quality care.   I. Background Abortion doulas were started byThe Doula Project in New York City.[1]They initially worked with New York City public hospitals and eventually expanded to working with Planned Parenthood clinics, as well as other care providers.[2]Over recent years, abortion doulas have been offered in more states such as California, Arizona, and New Hampshire. Abortion doulas can work independently, in a collective, or in an abortion clinic.[3]More often, they work in a collective where they are trained and employed in clinics that are partnered with the organization. Many abortion doulas started working on a volunteer basis. Now, many are funded by donations, which allow their services to be free for patients.[4]When abortion doulas work independently, their rates are based on the specific services that they provide.[5]Patients can seek out abortion doulas through multiple avenues. They can seek out doulas that work independently, work in an abortion clinic, or through doula organizations, such as the Doula Project or The San Francisco Doula Group. II. Doulas The role of a doula has existed since ancient times. The word “doula” comes from the Greek language and translates to “a woman who serves”.[6]In 1969, Dr. Dana Raphael originated the use of the word “doula” in the US to describe a person who guides mothers through childbirth and assists them postpartum, specifically helping them breastfeed.[7]Dr. Raphael encouraged emotionally supporting new mothers through creating the new professional role of a doula.[8]  Currently, doulas are trained in helping women emotionally and physically during pregnancy, childbirth, and postpartum. Doulas do not provide medical care, but they provide services such as birthing education, massage, assistance with breastfeeding, and educating mothers about the delivery process, such as knowing what to expect and what can go wrong. Research has demonstrated the effectiveness and benefits of doulas. For example, one meta-analysis compared women who received doula support during childbirth to women who did not. The study showed that doula-supported women had shorter labors, decreased complications with delivery, and rated childbirth as less painful than women without doula support.[9]Psychosocial benefits such as reduced anxiety, decreased symptoms of depression, and positive feelings associated with childbirth were significant for the doula-supported group.[10]In the last couple of decades, doulas have become increasingly popular. More recently, doulas have started a movement labeled “full spectrum doula,” in which the role of a doula in supporting women has expanded beyond birth to include abortion and adoption.[11] III. Ethical Considerations Factual Inaccuracies Complete and accurate medical information is fundamental to informed consent and autonomous decision making. Inaccurate medical information about abortion is very common and can come from multiple sources. Currently, there are 29 states that have policies restricting abortion that are not based on scientific evidence.[12]While both state policies and national media may convey false information to the public about abortion, perhaps what is most surprising is when these inaccuracies are presented to patients by physicians or medical facilities. In most states, policies mandate that any medical facility providing abortions develop and present written material to patients that is intended to educate the patient about the abortion procedure.[13]However, in some states, laws have been passed that mandate the inclusion of misinformation in these materials.[14]Healthcare providers try to mitigate the harm of this inaccurate information by prefacing it with qualifiers, disclaimers, and apologies.[15]However, they are still not able to completely avoid harm from the outdated and misleading information, which also often intends to dissuade patients from receiving an abortion.[16]The most common factual inaccuracies include stating that an abortion leads to an increased risk of breast cancer, that the fetus can feel pain as early as 12 weeks old, and that psychological effects of the procedure can lead to suicide and “post abortion traumatic stress syndrome.”[17]All these statements are false and not supported by scientific evidence; in fact, psychologists and the Diagnostic and Statistical Manual of Mental Disorders(DSM-V) do not recognize a post-traumatic stress syndrome associated with abortion.[18]Furthermore, another common inaccuracy in almost 20 states includes materials with contact information to “Crisis Pregnancy Centers” that provide false information with the intent to deter women from having an abortion.[19] Even once piece of inaccurate information can impede a patient’s ability to make an informed, autonomous decision. When these false facts are given to patients from the hands of trusted medical professionals, it has a more influential impact than when portrayed in media and advertisements. Trust is a core value in the medical profession that determines the patient-physician relationship, and a part of this trust is communicating accurate and up-to-date information; if this trust did not exist in medicine, how would any patient make an informed decision? Where would they turn to for guidance and advice?[20]Challenges to informed consent and autonomy exist throughout medicine, as consent forms are complicated and filled with medical vocabulary that is often hard to understand. Signatures are sometimes scribbled onto forms before a procedure with minimal discussions to assess the patient’s understanding of the many risks and benefits. However, abortions have an additional layer of complexity regarding informed consent due to the religious and moral implications of choosing an abortion, while other common medical procedures, such as an appendectomy, do not carry the same implications. For example, a patient consenting to general surgery would probably not wonder if their physician’s advice against the surgery is due to his or her own moral values, or what the moral weight of the surgery will have on their conscious afterwards. Informed consent, regardless of procedure, should prioritize informed decision-making with evidence-based medicine without moral overtones. When inaccurate, biased, and false information is given to patients from medical institutions, it not only threatens the trust between patients and medical staff, but also prevents women from making an informed decision about their reproductive health. If abortion doulas can be a source of correct, up-to-date medical information, then women can make informed decisions based on thorough and accurate facts that allow them to exercise autonomy. Abortion doulas are well situated to correct the factual inaccuracies patients face for several reasons. First, abortion doulas are trained through a curated program with partnered medical facilities.[21]In other words, abortion doulas are thoroughly trained in patient-centered care that facilitates continuous patient support, which ranges from emotional support to providing accurate medical information when addressing patient concerns. Second, they have the time before the procedure to meet with the patient and discuss pre-abortion care topics such as providing information, addressing concerns, and preparing the patient for potential stigmatization.[22]Simultaneously, the doula can evaluate for any risk factors that may indicate negative emotions after the abortion, such as lack of social support, self-esteem, psychological stability, or multiple abortions.[23]Third, abortion doulas can provide post-abortion care counseling. While the doulas also have limited time with patients after the procedure, they would have more time than other healthcare professionals, such as nurses, to make sure the patient understands the medication regime while also offering psychological counseling for the patient on grief, guilt, and forgiveness.[24]With doulas providing technical post-procedure information, this allows them to answer any more questions that the patient may have about misleading, biased, out-of-date, or false information. Therefore, doulas can enhance patient autonomy by giving more accurate information. IV. Stigma Another critical problem facing patients who seek abortions is the stigma surrounding the procedure itself. An abortion requires many decisions to be made: do you want to be sedated or awake for the procedure? If you are awake, do you want someone to hold your hand or someone to talk to? Do you want to have privacy after the procedure? In fact, the first decision to be made is whether to have the abortion at all. For some women, that decision is immediate, quick, and assured. For others, the decision can be morally conflicting, such as due to religious reasons, society’s stigma, or other reasons. The moral conflict a woman faces when deciding on an abortion is determined by how much moral weight they apply to a fetus or embryo.[25]An abortion can make a woman feel as though they are a bad person or doing something morally wrong, especially if they place more weight on the moral status, or viability, of the fetus or embryo.[26]Regardless of why a woman feels conflicted, the bottom line is that these feelings exist, which can affect their decision-making abilities during the actual process. Our society stigmatizes women for having an abortion, it is our “modern-day Scarlet Letter.”[27]This stigma is under-researched but often theorized to be based on gender-biased roles of women in society.[28]Women who receive an abortion are labeled as “irresponsible” for having an unwanted pregnancy, or “selfish” and “unmotherly” for not wanting children. Therefore, women avoid judgement and prefer privacy during their abortion—but are these choices made because that is truly what a woman desires, or are they making these choices to avoid stigma? And, if they are making these choices to avoid stigma, how does it affect their autonomy as a decision-maker for their own healthcare choices? There is a difference between secrecy and privacy: women may want to keep their abortion decision private, like any other medical decision or health information.[29]However, some women make the decision in secret to avoid judgment and stigmatization. There is evidence that stigma plays a role in every decision of the abortion process. For example, one study explores the reasons why some women prefer to be awake versus asleep during the procedure. Women who choose to be asleep want to be less emotionally present for the fear of “seeing something” during the procedure. On the other hand, women who choose to be awake want to feel present, safe, and receive support during the process.[30]The study also found that most women rated an abortion procedure a “good experience” if care was provided in a discreet and private manner.[31]By preferring anesthesia and privacy, many women try to avoid dealing with the stigma and judgement from others. The stigma also prevents women from seeking or receiving social support.[32]While some women may make these choices because it is what they truly want, others might choose these options to avoid others witnessing their decision and from being stigmatized as a woman who “got an abortion.” Although abortion doulas cannot completely abolish the overarching societal stigma, they can help in several different ways on an individualistic level. Abortion doulas may fit the role of personalizing each experience to fit patients’ specific preferences. Doulas have the time and appropriate training to understand and discuss the emotional burdens that come along with the social stigma that surrounds abortions.[33]They have the training to explore the patient’s reasons for their decisions and can make sure they are comfortable with them. They do so in a non-judgmental way and strive to act as an advocate for the patient.[34]By listening to women and validating their decisions, women may not feel as many negative emotions surrounding the stigma or feel empowered that they made the right decision for themselves, regardless of social labels. This validation and empowerment gives women more agency in their own healthcare decisions while also providing emotional support in a situation that requires many difficult choices. Abortion doulas would become a support system for women, thereby promoting feminist ethics by normalizing emotions in a morally charged decision. They also promote the principal of beneficence by helping patients address any conflict between societal stigma and the woman’s own beliefs and morals. V. Barriers to Quality Care Access to abortion is limited: only 62 percent of American women live in counties with an abortion provider.[35]Many insurance companies do not cover abortions and clinics are often busy with limited availability, staff, and resources. Additionally, many women would need time off from work, childcare, transportation, and other resources to make it to any medical appointments—abortion care is not an exception. Currently, there are no professional programs for abortion providers to offer post-abortion counseling.[36]Additionally, in busy clinics, hospitals, or non-profit organizations such as Planned Parenthood, physicians attempt to provide as many abortions as possible to as many patients, leaving little time for post-abortion care. Provider burn-out is a major problem throughout healthcare, which has become more pronounced throughout the COVID-19 pandemic. Many providers, nurses, and other hospital staff are overworked and underpaid while hospitals themselves are overcrowded and underfunded. Moreover, abortion providers may be especially vulnerable to burn-outas they tend to both their patient’s medical and emotional needs during a procedure that has both physical pain and a plethora of emotion surrounding it.[37]With an increase in patient number due to decreased availability of services and a physician’s responsibility to tend to the patient’s emotional well-being and physical pain, this increases the risk of provider burn-out, which in turn, can affect the quality of medical care given to women receiving abortions.[38] Abortion doulas can fill the role of providing post-abortion care and help alleviate provider burn-out in many ways. First, as mentioned previously, they have the time before the procedure to meet with the patient and discuss pre-abortion care topics, provide information, and answer questions.[39]Secondly, abortion doulas can provide patients with the post-abortion care counseling that many physicians and nurses are not able to provide. This role has multiple effects. While post-abortion counseling can help address factual inaccuracies through answering questions, it can also allow doulas to make sure the patient understands the medication regime and how to deal with the pain that follows the procedure.[40]With doulas providing technical post-procedure information, this relieves understaffed nurses of some of their many tasks and responsibilities in the post-abortion recovery room; this will likely decrease the number of women who come back to the clinic or hospital with complications or additional questions. By discussing various emotions during post-procedure counseling, doulas support women by listening to their feelings. Some women may feel relief and joy after the procedure, while other may feel despair, regret, grief, or shame. When a doula listens to and supports a patient, they validate their emotions and indirectly validate their abortion decision, thereby improving the quality of the experience. Lastly, the integration of doulas into routine abortion care allows physicians and staff to concentrate on the procedure itself.[41]The doula can offer patient-centered, hands-on care to the patient while the rest of the healthcare team focuses on their own technical tasks.[42]Doula support can also decrease the need for more clinic staff in the procedure room by “decreasing the redirection of clinic staff resources,”thus creating a more efficient medical environment.[43]As the historical role of a doctor playing every role is becoming more obsolete, and the idea of a multi-faceted, integrative healthcare team is becoming the norm, it makes sense that an abortion doula can fill a niche on a healthcare team for emotionally laden procedures like abortions. The niche that the doula fills is to support, comfort, and be present with the patient throughout the entirety of the procedure in a nonjudgmental way. While nurses and doctors can be supportive, sympathetic, and caring, their jobs and roles include other responsibilities that do not allow them to be a continuous presence for the patient throughout their visit.[44]By having a person on the healthcare team whose  job is to provide patient support, even if it is simply to hold their hand, the patient is more likely to be treated as a whole and provided better quality medical care. CONCLUSION Inaccurate information, stigma, and quality of care barriers are only a few of the many problems facing patients who want to receive an abortion. Each problem poses ethical challenges while also impeding quality medical care and adding to patients’ emotional burdens. Inaccurate facts and stigma hinder an informed decision, and thereby, threaten patient autonomy. The stigma of abortion can also lead to patients experiencing more negative emotions. Furthermore, healthcare barriers include a wide range of problems, from understaffed clinics to provider burn-out, all of which affect the quality and access to care for patients seeking an abortion. Abortion doulas are part of the solution to these problems. They are an extra resource, a set of hands for the patients to hold in the procedure room, and an expert in providing emotional and social support for the patient. They can enhance a patient’s decision-making skills, support the patient’s emotional well-being, answer factual questions, counter stigma, and help provide quality medical care. Therefore, abortion doulas enhance patient autonomy, promote beneficence, improve access to quality abortion care, and fill a necessary role during the abortion process.     [1]Shakouri, Shireen Rose "The Doula Project." Ed. Lee, Shannon2019. Print. [2]Shakouri, Shireen Rose "The Doula Project." Ed. Lee, Shannon2019. Print. [3]Onyenacho, Tracey. "Abortion Doulas Help People Navigate the Process. They Say Their Work Was More Crucial Than Ever in the Pandemic." The Lily 2021. Web. 12/29/2021 2021 [4]Onyenacho, Tracey. "Abortion Doulas Help People Navigate the Process. They Say Their Work Was More Crucial Than Ever in the Pandemic." The Lily 2021. Web. 12/29/2021 2021 [5]Onyenacho, Tracey. "Abortion Doulas Help People Navigate the Process. They Say Their Work Was More Crucial Than Ever in the Pandemic." The Lily 2021. Web. 12/29/2021 2021 [6]Dukehart, Coburn. "Doulas: Exploring a Tradition of Support." The Baby Project. National Public Radio 2011. Web2021. [7]Roberts, Sam. "Dana Raphael, Proponent of Breast-Feeding and Use of Doulas, Dies at 90." New York Times 2016. Web2020. [8]Roberts, Sam. "Dana Raphael, Proponent of Breast-Feeding and Use of Doulas, Dies at 90." New York Times 2016. Web2020. [9]Scott, K. D., P. H. Klaus, and M. H. Klaus. "The Obstetrical and Postpartum Benefits of Continuous Support During Childbirth." J Womens Health Gend Based Med 8.10 (1999): 1257-64. Print. [10]Scott, K. D., P. H. Klaus, and M. H. Klaus. "The Obstetrical and Postpartum Benefits of Continuous Support During Childbirth." J Womens Health Gend Based Med 8.10 (1999): 1257-64. Print. [11]Chor, J., et al. "Doulas as Facilitators: The Expanded Role of Doulas into Abortion Care." J Fam Plann Reprod Health Care 38.2 (2012): 123-4. Print. [12]Nash, Elizabeth; Gold, Rachel Benson; Mohamed, Lizamarie; Ansari-Thomas, Zohra; Capello, Olivia "Policy Trends in the States, 2017." Guttmacher Instititue 2018. Web. [13]Richardson, Chinue Turner; Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials " Guttmacher Policy Review 9.4 (2006). Print. [14]Buchbinder, Mara, et al. "“Prefacing the Script” as an Ethical Response to State-Mandated Abortion Counseling." AJOB Empirical Bioethics 7.1 (2016): 48-55. Print. [15]Buchbinder, Mara, et al. "“Prefacing the Script” as an Ethical Response to State-Mandated Abortion Counseling." AJOB Empirical Bioethics 7.1 (2016): 48-55. Print. [16]Richardson, Chinue Turner; Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials " Guttmacher Policy Review 9.4 (2006). Print. [17]Richardson, Chinue Turner; Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials " Guttmacher Policy Review 9.4 (2006). Print. [18]Blevins, Christy A., et al. "The Posttraumatic Stress Disorder Checklist for Dsm-5 (Pcl-5): Development and Initial Psychometric Evaluation." Journal of Traumatic Stress 28.6 (2015): 489-98. Print. [19]Richardson, Chinue Turner; Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials " Guttmacher Policy Review 9.4 (2006). Print. [20]Pellegrini, C. A. "Trust: The Keystone of the Patient-Physician Relationship." J Am Coll Surg 224.2 (2017): 95-102. Print. [21]Shakouri, Shireen Rose "The Doula Project." Ed. Lee, Shannon2019. Print. [22]Chor, Julie, et al. "Factors Shaping Women’s Pre-Abortion Communication with Members of Their Social Network." Journal of Community Health 44.2 (2019): 265-71. Print. [23]Harris, Amy A. "Supportive Counseling before and after Elective Pregnancy Termination." Journal of Midwifery & Women’s Health 49.2 (2004): 105-12. Print. [24]Chor, Julie, et al. "Factors Shaping Women’s Pre-Abortion Communication with Members of Their Social Network." Journal of Community `    Health 44.2 (2019): 265-71. Print. [25]Watson, Katie. The Scarlet A Oxford University Press, 2018. Print. [26]Altshuler, A. L., et al. "A Good Abortion Experience: A Qualitative Exploration of Women's Needs and Preferences in Clinical Care." Soc Sci Med 191 (2017): 109-16. Print. [27]Watson, Katie. The Scarlet A Oxford University Press, 2018. Print. [28]Norris, A., et al. "Abortion Stigma: A Reconceptualization of Constituents, Causes, and Consequences." Womens Health Issues 21.3 Suppl (2011): S49-54. Print. [29]Watson, Katie. The Scarlet A Oxford University Press, 2018. Print [30]Altshuler, A. L., et al. "A Good Abortion Experience: A Qualitative Exploration of Women's Needs and Preferences in Clinical Care." Soc Sci Med 191 (2017): 109-16. Print. [31]Altshuler, A. L., et al. "A Good Abortion Experience: A Qualitative Exploration of Women's Needs and Preferences in Clinical Care." Soc Sci Med 191 (2017): 109-16. Print. [32]Norris, A., et al. "Abortion Stigma: A Reconceptualization of Constituents, Causes, and Consequences." Womens Health Issues 21.3 Suppl (2011): S49-54. Print. [33]Basmajian, Alyssa. "Abortion Doulas." Anthropology Now 6.2 (2014): 44-51. Print. [34]Amram, Natalie Lea, et al. "How Birth Doulas Help Clients Adapt to Changes in Circumstances, Clinical Care, and Client Preferences During Labor." J Perinat Educ.2: 96-103. Print. [35]Dennis, Amanda, Ruth Manski, and Kelly Blanchard. "A Qualitative Exploration of Low-Income Women's Experiences Accessing Abortion in Massachusetts." Women's Health Issues 25.5 (2015): 463-69. Print. [36]Harris, Amy A. "Supportive Counseling before and after Elective Pregnancy Termination." Journal of Midwifery & Women’s Health 49.2 (2004): 105-12. Print. [37]Chor, J., et al. "Integrating Doulas into First-Trimester Abortion Care: Physician, Clinic Staff, and Doula Experiences." J Midwifery Womens Health 63.1 (2018): 53-57. Print. [38]Jerman J, Jones RK and Onda T. "Characteristics of U.S. Abortion Patients in 2014 and Changes since 2008." Guttmacher Instititue 2016. Web. [39]Chor, Julie, et al. "Factors Shaping Women’s Pre-Abortion Communication with Members of Their Social Network." Journal of Community Health 44.2 (2019): 265-71. Print. [40]Chor, Julie, et al. "Factors Shaping Women’s Pre-Abortion Communication with Members of Their Social Network." Journal of Community Health 44.2 (2019): 265-71. Print. [41]Chor, J., et al. "Integrating Doulas into First-Trimester Abortion Care: Physician, Clinic Staff, and Doula Experiences." J Midwifery Womens Health 63.1 (2018): 53-57. Print. [42]Chor, J., et al. "Integrating Doulas into First-Trimester Abortion Care: Physician, Clinic Staff, and Doula Experiences." J Midwifery Womens Health 63.1 (2018): 53-57. Print. [43]Chor, J., et al. "Doula Support During First-Trimester Surgical Abortion: A Randomized Controlled Trial." Am J Obstet Gynecol 212.1 (2015): 45.e1-6. Print. [44]Basmajian, Alyssa. "Abortion Doulas." Anthropology Now 6.2 (2014): 44-51. Print.

Tiago Moreira

This paper describes and explores how translational research models, embedded in institutions and standards, interact with the epistemic and material practices of cell biologists of ageing, a field re-energized by emergent technoscientific promises that hinge on the possibility of eliminating or manipulating senescent cells to tackle age-related diseases. Drawing on a 3-year long lab ethnography, the paper suggests that knowledge making in cell biology of ageing relies on two different epistemic and material cultures, to then argue that these cultures combine in four different types of experimental systems, only one of which can properly be seen as pertaining to translation as usually conceived. The paper further analyses how cell biologists articulate the linear temporality of translational research with the unfolding experimental chains where, by shifting between types of experimental system, cell biologists are able to generatively reconfigure their epistemic objects, and the consequences of this fragile arrangements for the field.

Alice Cavolo, Bernadette Dierckx de Casterlé, Gunnar Naulaers et al.

Abstract Background Deciding whether to resuscitate extremely preterm infants (EPIs) is clinically and ethically problematic. The aim of the study was to understand neonatologists’ clinical–ethical decision-making for resuscitation of EPIs. Methods We conducted a qualitative study in Belgium, following a constructivist account of the Grounded Theory. We conducted 20 in-depth, face-to-face, semi-structured interviews with neonatologists. Data analysis followed the qualitative analysis guide of Leuven. Results The main principles guiding participants’ decision-making were EPIs’ best interest and respect for parents’ autonomy. Participants agreed that justice as resource allocation should not be considered in resuscitation decision-making. The main ethical challenge for participants was dealing with the conflict between EPIs’ best interest and respect for parents’ autonomy. This conflict was most prominent when parents and clinicians disagreed about births within the gray zone (24–25 weeks). Participants’ coping strategies included setting limits on extent of EPI care provided and rigidly following established guidelines. However, these strategies were not always feasible or successful. Although rare, these situations often led to long-lasting moral distress. Conclusions Participants’ clinical–ethical reasoning for resuscitation of EPIs can be mainly characterized as an attempt to balance EPIs’ best interest and respect for parents’ autonomy. This approach could explain why neonatologists considered conflicts between these principles as their main ethical challenge and why lack of resolution increases the risk of moral distress. Therefore, more research is needed to better understand moral distress in EPI resuscitation decisions. Clinical Trial Registration: The study received ethical approval from the ethics committee of UZ/KU Leuven (S62867). Confidentiality of personal information and anonymity was guaranteed in accordance with the General Data Protection Regulation of 25 May 2018.

Maria Olívia Sobral Fraga de Medeiros, Mariana do Valle Meira, Jacilene Santiago do Nascimento Trindade dos Santos et al.

Resumo O objetivo do artigo é conhecer a abordagem de equipes de emergência à assistência de pacientes com doença crônica avançada, na perspectiva dos cuidados paliativos. O texto traz resultados de revisão integrativa que buscou artigos em cinco bases de dados, utilizando os descritores “serviços médicos de emergência”, “equipe de assistência ao paciente”, “atitude do pessoal de saúde” e “cuidados paliativos”. Inicialmente, foram identificadas 12.290 publicações, reduzidas, após análise, a uma amostra final de 26 artigos. Entre as principais medidas mencionadas na literatura para levar os cuidados paliativos à emergência, estão: plano de cuidados individualizado e flexível; gestão de redes; acesso à equipe de cuidados paliativos; comunicação empática; identificação dos pacientes elegíveis; e controle de sintomas. Conclui-se que as equipes de emergência precisam reconhecer a importância dos cuidados paliativos nesse serviço, redirecionando o cuidado concentrado em “salvar vidas” para um cuidado que preserve a dignidade humana.

G. McKenzie, G. Robert, E. Montgomery

Freebirthing is a clandestine practice whereby women intentionally give birth without healthcare professionals (HCPs) present in countries where there are medical facilities available to assist them. Women who make this decision are frequently subjected to stigma and condemnation, yet research on the phenomenon suggests that women’s motivations are often complex. The aim of this review was to explore how freebirth has been conceptualised over time in the English-language academic and grey literature. The meta-narrative methodology employed enables a phenomenon to be understood within and between differing research traditions, as well as against its social and historical context. Our research uncovered nine research traditions (nursing, autobiographical text with birthing philosophy, midwifery, activism, medicine, sociology, law and ethics, pregnancy and birth advice, and anthropology) originating from eight countries and spanning the years 1957–2018. Most of the texts were written by women, with the majority being non-empirical. Empirical studies on freebirth were usually qualitative, although there were a small number of quantitative medical and midwifery studies; these texts often focused on women’s motivations and highlighted a range of reasons as to why a woman would decide to give birth without HCPs present. Motivations frequently related to women’s previous negative maternity experiences and the type of maternity care available, for example medicalised and hospital-based. The use of the meta-narrative methodology allowed the origins of freebirth in 1950s America to be traced to present-day empirical studies of the phenomenon. This highlighted how the subject and the publication of literature relating to freebirth are embedded within their social and historical contexts. From its very inception, freebirth aligns with the medicalisation of childbirth, the position of women in society, the provision of maternity care and the way in which women experience maternity services.

Marianne Six Dijkstra, E. Siebrand, S. Dorrestijn et al.

Purpose Computer algorithms and Machine Learning (ML) will be integrated into clinical decision support within occupational health care. This will change the interaction between health care professionals and their clients, with unknown consequences. The aim of this study was to explore ethical considerations and potential consequences of using ML based decision support tools (DSTs) in the context of occupational health. Methods We conducted an ethical deliberation. This was supported by a narrative literature review of publications about ML and DSTs in occupational health and by an assessment of the potential impact of ML-DSTs according to frameworks from medical ethics and philosophy of technology. We introduce a hypothetical clinical scenario from a workers’ health assessment to reflect on biomedical ethical principles: respect for autonomy, beneficence, non-maleficence and justice. Results Respect for autonomy is affected by uncertainty about what future consequences the worker is consenting to as a result of the fluctuating nature of ML-DSTs and validity evidence used to inform the worker. A beneficent advisory process is influenced because the three elements of evidence based practice are affected through use of a ML-DST. The principle of non-maleficence is challenged by the balance between group-level benefits and individual harm, the vulnerability of the worker in the occupational context, and the possibility of function creep. Justice might be empowered when the ML-DST is valid, but profiling and discrimination are potential risks. Conclusions Implications of ethical considerations have been described for the socially responsible design of ML-DSTs. Three recommendations were provided to minimize undesirable adverse effects of the development and implementation of ML-DSTs.

C.M. Klugman, W.A. Nelson, L.L. Anderson-Shaw et al.

In 2010, the World Health Organization (WHO) released Increasing Access to Health Workers in Remote and Rural Areas Through Improved Retention: Global Policy Recommendations, a report on strategies for increasing and retaining health care workers in rural regions. The report states that while 50 percent of the world’s population lives in rural areas, only 38% of the nursing and less than 25% of the physician workforce serves these regions. For the United States, the WHO states that 20% of the population lives in rural regions and only 9% of registered physicians practice in such areas. Among the solutions the WHO offers is contextualizing medical education. In other words, medical students should be drawn from rural populations, trained through rural community experiences, and taught using rural health specific situations: “Revise undergraduate and postgraduate curricula to include rural health topics so as to enhance the competencies of health professionals working in rural areas, thereby increase their job satisfaction and retention” (WHO 2010, 3; Barrett, Lipsky, and Lutfiyya 2011). This, strategy suggests physician success and satisfaction in rural practice requires training using rural-specific cases, knowledge, and experience. In parallel to the need to increase rural clinical experience, there is a need to better understand the unique ethical issues that arise in the rural environment. A growing rural ethics literature points to an emerging awareness of the special ethical considerations inherent to clinical practice in these closely-knit, tightly interdependent small communities, as well as the need to develop ethical resources for these providers. According to Nelson, et. al. the “rural context significantly impacts the common health care ethical conflicts including confidentiality, boundary issues, shared decision-making, professional-patient relationship, and allocation of resources for a significant portion of our population” (Nelson et al. 2006, 45). For example, there may be unique challenges to patient privacy when patients are also the physician’s neighbors, friends, children’s teachers, and relatives (Klugman and Dalinis 2008; Nelson 2010; Nelson 2010; Nelson, Greene, and West 2010; Nelson and Schmidek 2008). In the Encyclopedia of Bioethics, Dan Callahan wrote that bioethics has evolved into four areas of general inquiry including what he calls cultural bioethics, which, “refers to the effort systematically to relate bioethics to the historical, ideological, culture and social context in which it is expressed” (Callahan 2004). John Hardwig has also asserted that mainstream bioethics is focused on urban issues (Hardwig 2006). In the last decade, a cultural bioethics subfield of “urban bioethics” has emerged that proposes “life-density, diversity, and disparity” create unique ethical challenges (Fleischman, Levin, and Meekin 2001),(Blustein and Fleischman 2004).  In recognizing that there exists an urban bioethics that focuses on problems of population density, then there must also exist a correlative cultural bioethics of rurality that reflects a low-density population, agricultural culture, and a lack of needed health care resources. “To date, there exists a limited focus on rural healthcare ethics shown by the scarcity of rural healthcare ethics literature, rural ethics committees, rural focused ethics training and research on rural ethics issues” (Nelson et al. 2007). For instance, a national study noted that 40% of critical access hospitals do not have ethics committees to assist rural clinicians with ethics conflicts compared to almost 100% of hospitals with over 400 beds (Fox, Myers, and Pearlman 2007; Nelson et al. 2010). While Nelson et. al. have made a call for increased training in ethical issues in rural contexts, there is no information available regarding whether physician education programs currently teach in this area (Nelson et al. 2007). To empirically assess the prevalence of rural medical and ethics education for medical and osteopathic students, the researchers constructed a comprehensive survey. Methods The Rural Medical Ethics Information Survey employed yes/no, multiple choice, and fill-in-the-blank questions drawn from the literature and from recommendations by the Rural Health Care Ethics Working Group – a group of rural medical educators and ethicists. The University of Texas Health Science Center San Antonio Institutional Review Board determined the survey to be exempt in June 2010. In Fall 2010, the researchers sent a recruitment email to all 133 U.S. member schools of the Association of American Medical Colleges (AAMC), and all 26 members of the American Association of Colleges of Osteopathic Medicine (AACOM). The emails were directed to the senior medical/osteopathic education official at each institution, asking them to either complete a survey on SurveyMonkey or to forward the survey link to someone within the organization who could appropriately respond (SurveyMonkey 2011). For schools that did not complete the survey, an email reminder was sent 3 weeks later. For schools that still did not complete the survey, a third email reminder was sent 4 weeks after that. The researchers asked whether the school had a required or elective rural experience and the form of that experience. The officials were also queried as to whether they offered training specifically in rural health care ethics. Other information collected included demographics such as number of students in the student body, percentage of students originally from rural areas, the zip code of the school, and its self-identified distance from an urban center (i.e. the “rurality” of the location). The mainly descriptive statistical analysis was performed with exploratory tests of association. Binary responses (yes/no items) were summarized by proportions, and their 95% confidence intervals (CIs) were constructed with the exact binomial method. These CIs can be constructed when there is no variation in the response (All yes or all no) and are conservative for small sample sizes especially in the finite population setting. The CIs for differences in proportion were based upon asymptotic assumptions. Non-responses were considered to be “no.” Associations between binary and unordered categorical responses were tested using Fisher’s exact method. Associations with ordered categorical responses (Distance to Urban) were tested using a permutation-based method (H. and C. 1999). Associations between binary outcomes and continuous variables (% Rural Residency) were tested using logistic regression. Correlations between continuous variables were tested with the Spearman Rank correlation test. The level of significance was chosen to be P = .05 with 2-sided alternatives. We conducted the analysis with the R statistical software(R Development Core Team 2006) and the “coin” R package (Hothorn et al. 2008). The authors created the summary tables with SAS software (SAS Institute Inc 2008). Results Of the 159 schools surveyed, 124 completed the questionnaire (70.4% response rate). Of those, 16 identified as osteopathic schools (DO), 62 as allopathic (MD) and 46 did not offer a disciplinary identity. The researchers asked schools to classify their geographic location. Fifty-nine (47.6 %) indicated an urban location (0-5 miles from urban core), 3 (2.4 %) as suburban (6-20 miles from urban core), 3 (2.4 %) as exurban (21-50 miles from urban core), 8 (6.5 %) as rural (51 or more miles from urban core) and 51 (41.0 %) did not respond to this question. Since 73 schools also reported their zip code, this information was used to identify the schools Rural Urban Commuting Area Code (RUCA) classification (United States Department of Agriculture Economic Research Service 2005). Of these 73 schools, the mean RUCA code was 1.1 with a standard deviation of 0.5, meaning high-density development. As Table 1 demonstrates, the researchers asked schools if they require a rural experience of all students. Thirty-two schools (29.4%) indicated that they had such a requirement. Additionally, many schools offer rural education tracks that may be required only of a specific subset of students. Some of these specialty tracks only accept students from rural areas while other tracks are intended for students who plan to practice in rural regions. Six schools (12.5%) require a rural experience only for students in these specialty programs. Sixty-two schools (61.4%) offer some form of an elective rural experience for their students. Schools that had required a rural educational experience for all or some of their students often also offer a rural elective experience, thus the categories are not mutually exclusive. Only 7 (21.9%) of the 32 schools that require a rural experience for all students also teach rural health care ethics. Table 2 indicates that only 25 of the 32 schools with required rural experience answered this question. In the 6 schools with a rural specialty track, 4 (66.7%) teach rural health care ethics. In regards to the 64 schools with a rural elective, only 24 responded to the question, “Does your elective program in rural medicine include rural-focused ethical issues?” Eleven of those 24 (45.8%) indicated that they teach rural health care ethics. Discussion Less than 1/3 of schools require a rural experience of all students. Of those, only 1 in 5 offer a rural ethics curriculum. Of the 61.4% of schools that offer a rural elective, 17.7% of those offer training in rural ethics issues. However, in schools where a rural experience was required of a subset of students, 61.4% of those schools required rural health care ethics. Thus, schools that require ethics experiences of a subset of students may be more likely to have rural ethics training because of their focused mission. Or since these schools have a larger draw from rural areas, those students may demand the rural ethics focus in their training. In looking at the effect of geographic location on rural ethics teaching, the authors initially planned to rely on RUCA codes, which are created by the federal government to map areas of urbanity and rurality. However, although 8 schools self-identified as rural (defined on the survey as more than 50 miles from an urban center), the median 1.1 RUCA code for all schools shows that the self-report and the RUCA codes did not always match. For example, The Geisel Medical School at Dartmouth is located 125 miles from Boston in a pastoral area of New Hampshire. The population density for the town of Hanover, NH is 1,792 people per square mile meaning that the RUCA code is 1, or urban, while the average density for New Hampshire is 146.8 (RUCA codes 7 to 10). The presence of a medical school requires a certain density of people that may give the area an urban RUCA code even though the setting is rural. Therefore, RUCA codes were not useful in looking at geographic location of a medical school and the researchers relied more on self-reports, a less objective measure. The authors note several limitations and insights regarding this study. Many schools skipped large sections of the survey. For instance, nearly 41% of all respondents did not indicate their zip code. The survey may have been too detailed, requiring too much time for a senior education officer to complete. Additionally, few schools answered questions about hours of instruction, percent of students hailing from rural areas, and percent of graduates who go to residency in rural regions. Those that did answer often indicated they were making guesses, raising questions of the validity of those responses and thus they were excluded from analysis. Conclusion The survey results provide an enhanced understanding of the limited rural focused medical training programs in the United States. The survey results also indicate how rural ethics issues do not receive a great deal of attention in medical education. Both of these may contribute to the minority of graduating students choosing to practice in rural settings. The authors believe that following the World Health Organization’s goal of increasing rural health care workforce requires medical training experiences in rural settings including attending to the ethical challenges faced by physicians practicing in such geographic locations and cultural spaces. Drawing on Callahan’s perception of the importance of cultural bioethics, rural bioethics should be part of rural practice experience and medical school curricula, to give students the information and skills needed in rural settings.  PDF References: Barrett, F. A., M. S. Lipsky, and M. N. Lutfiyya. 2011. The impact of rural training experiences on medical students: a critical review. Academic medicine : journal of the Association of American Medical Colleges 86 (2):259-63. Blustein, J., and A. R. Fleischman. 2004. Urban bioethics: adapting bioethics to the urban context. Academic medicine : journal of the Association of American Medical Colleges 79 (12):1198-202. Callaghan, Daniel. 2004. Bioethics. In Encyclopedia of Bioethics, edited by S. G. Post. New York: Macmillan Reference. Fleischman, A. R., B. W. Levin, and S. A. Meekin. 2001. Bioethics in the urban context. Journal of urban health : bulletin of the New York Academy of Medicine 78 (1):2-6. Fox, E., S. Myers, and R. A. Pearlman. 2007. Ethics consultation in United States hospitals: a national survey. The American journal of bioethics : AJOB 7 (2):13-25. H., Strasser, and Weber C. 1999. On the Asymptotic Theory of Permutation Statistics. Mathematical Methods of Statistics 8:220-250. Hardwig, J. 2006. Rural health care ethics: what assumptions and attitudes should drive the research? The American journal of bioethics : AJOB 6 (2):53-4. Hothorn, Torsten, Kurt Hornik, Mark A. van de Wiel, and Achim Zeileis. 2008. Implementing a Class of Permutation Tests: The coin Package. Journal of Statistical Software 28 (8):1-23. Klugman, Craig M., and Pamela M. Dalinis, eds. 2008. Ethical Issues in Rural Health Care. Baltimore: The Johns Hopkins University Press. Nelson, W. A. 2010. Health care ethics and rural life. Stigma, privacy, boundary conflicts raise concerns. Health progress 91 (5):50-4. Nelson, W. A., M. A. Greene, and A. West. 2010. Rural Health Care Ethics: No Longer the Forgotten Quarter of Medical Ethics. Cambridge Quarterly for Healthcare Ethics 19 (4):510-517. Nelson, W. A., M. C. Rosenberg, T. Mackenzie, and W. B. Weeks. 2010. The presence of ethics programs in critical access hospitals. Health Care Ethics Committee Forum 22 (4):267-74. Nelson, W. A., and J. M. Schmidek. 2008. 'Rural Health Care Ethics. In The Cambridge Textbook of Bioethics, edited by P. A. Singer. Cambridge, UK: Cambridge University Press. Nelson, W., G. Lushkov, A. Pomerantz, and W. B. Weeks. 2006. Rural health care ethics: is there a literature? The American journal of bioethics : AJOB 6 (2):44-50. Nelson, W., A. Pomerantz, K. Howard, and A. Bushy. 2007. A proposed rural healthcare ethics agenda. Journal of medical ethics 33 (3):136-9. Nelson, William A., ed. 2010. Handbook for Rural Health Care Ethics: a Practical Guide for Professional. Hanover, NH: Dartmouth College Press. R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria. SAS for Windows 9.2. SAS Institute Inc, Cary, NC http://www.surveymonkey.com. SurveyMonkey, Palo Alto, CA. United States Department of Agriculture Economic Research Service. 2011. Measuring Rurality: Rural-Urban Commuting Area Codes. U.S. Department of Agriculture 2005 [cited December 7 2011]. Available from http://www.ers.usda.gov/briefing/rurality/ruralurbancommutingareas/. WHO. 2010. Increasing access to health workers in remote and rural areas through improved retention: Global policy recommendations. Geneva, Switzerland: World Health Organization.

José Enrique Gómez Álvarez

El artículo tiene como objetivo demostrar que el camino más adecuado en la donación de órganos es la donación expresa, y aun en el caso de la donación tácita, se da la necesidad de la opinión de los familiares. Lo anterior se logra por medio del análisis del acto voluntario. Se inicia con una introducción en donde se expone la propuesta de la cámara de senadores en México para introducir el sistema de donador tácito de órganos cadavéricos. Después, en las secciones II a V se analizan los presupuestos antropológicos, resaltando en particular los momentos del acto voluntario y algunas propuestas en torno a los diversos sistemas de donación. Se cierra con la conclusión.

S. Tarlow, Emma Battell Lowman

This open access book is the culmination of many years of research on what happened to the bodies of executed criminals in the past. Focusing on the eighteenth and nineteenth centuries, it looks at the consequences of the 1752 Murder Act. These criminal bodies had a crucial role in the history of medicine, and the history of crime, and great symbolic resonance in literature and popular culture. Starting with a consideration of the criminal corpse in the medieval and early modern periods, chapters go on to review the histories of criminal justice, of medical history and of gibbeting under the Murder Act, and ends with some discussion of the afterlives of the corpse, in literature, folklore and in contemporary medical ethics. Using sophisticated insights from cultural history, archaeology, literature, philosophy and ethics as well as medical and crime history, this book is a uniquely interdisciplinary take on a fascinating historical phenomenon.

Jennifer P Cohen

In 1987, Harry Reasoner of 60 Minutes questioned Dr. Selma Dritz about her search in the early 1980s for the origins of the deadly outbreak of AIDS in the United States. “It was the whodunit of the century, and I was born nosy,” she tells him. The title of the 60 Minutes piece was “Patient Zero” who Mr. Reasoner explains “was a man – a central victim and victimizer” in the spread of AIDS.  Dr. Dritz, who had been the head of infectious diseases in the San Francisco branch of the Centers for Disease Control and Prevention (CDC), recalled warning Patient Zero of the danger he posed to others. In her retelling, Mr. Dugas callously rebuffed her concerns, showed little remorse for infecting others, and concluded their interaction with “screw you.” Also interviewed was Randy Shilts whose book, And the Band Played On, identified Patient Zero as Gaëtan Dugas, a Canadian flight attendant. Mr. Shilts explained that Mr. Dugas constituted what epidemiologists today call a superspreader – someone with unlimited ability to infect others and “speed this disease into every corner of America.”  The narrative of a villainous foreigner maliciously spreading a deadly epidemic culminated in an infamous New York Post headline condemning Mr. Dugas as “THE MAN WHO GAVE US AIDS.” The story unraveled upon closer inspection.  In 1984, the CDC had indeed identified a “Patient O” who had sexual connections with other AIDS patients, but the “O” stood for “Outside” California. Nowhere in the study is “Patient O” identified as “Patient Zero” -- i.e., the person who introduced the virus in America. In 2007, an article in the Proceedings of the National Academy of Sciences concluded that HIV traveled from Africa to Haiti and then on to the US sometime in 1969, many years before Mr. Dugas became infected. On October 26th of this year, the story was conclusively debunked in a study published in Nature. The authors “recovered the HIV-1 genome from the individual known as ‘Patient O’ and found neither biological nor historical evidence that he was the primary case in the US….”  The mainstream media rediscovered the story with the New York Times writing that “the alleged ‘Patient Zero’ of the American AIDS epidemic – a French Canadian flight attendant named Gaëtan Dugas, who died of AIDS in 1984 – was exonerated last week.” Dr. Dritz’s description of the epidemic’s origins as a “whodunit,” as well as Mr. Reasoner’s characterization of Mr. Dugas as a “victimizer,” embody culpable language, reflecting the difficulties of balancing the need to identify “index cases” as they are known in epidemiology with the ethical considerations of patient privacy and justice. As discussed by Ronald Bayer and Amy Fairchild in The Genesis of Public Health Ethics, the AIDS epidemic triggered a rethinking of ethics in public health. Hard fought battles for privacy and civil liberties had been won by the gay community, and the traditional epidemiological methods of mandatory case reporting by name, contact investigation and quarantine were perceived as threats to those gains. Consequently, public health measures emphasized education to change cultural behavior, the protection of individual privacy, and a rejection of  coercive measures in favor of voluntary testing and counselling of those infected and at risk. Richard McKay, a co-author of the Nature study, has questioned whether the notion of a “patient zero” is itself a fallacy that overshadows structural factors that contribute to the spread of disease such as cultural inequalities and barriers to health care and education.  Containing an epidemic is far more complex than hunting down the person who may have spread the disease initially. David Heymann, an infectious disease epidemiologist at the London School of Hygiene and Tropical Medicine, confirms that locating a patient zero is only useful if they are still alive and infecting others: “And more often than not, especially in large disease outbreaks, they’re not.” The modern healthcare response to epidemics aims to respectfully and ethically limit exposure and, when necessary, alter societal behaviors that may spread disease, but the Gaëtan Dugas case demonstrates that the media and the public may focus unduly on blaming the behavior of individuals. The overwhelming media attention on Dr. Craig Spencer and nurse Kaci Hickox during the Ebola crisis are more recent examples. Many also believe that policymakers have over-reacted to the public’s fears of the individual, malicious AIDS infector: 32 states have criminalized the spread of HIV. The search and public identification of a “patient zero” risks stigmatizing and traumatizing individuals, and alienating those who may be infected from coming forward. The exoneration of Patient O is a reminder that the management of an epidemic must be met with a determination to protect the privacy, liberty and just treatment of individual patients.   References 1) Dritz, Selma. “Patient Zero.” Interview with Harry Reasoner. 60 Minutes. CBS. November 15, 1987. 2) Rothman, Kenneth J., et al. Modern Epidemiology, 3rd Edition. (Philadelphia: Lippincott, Williams & Wilkins) 2008, 561. 3) Shilts, Randy.  “Patient Zero.” Interview with Harry Reasoner. 60 Minutes. CBS. November 15, 1987. 4) McKay, Ricard A., “Patient Zero”:The Absence of a Patient’s View of the Early North American AIDS Epidemic,” Bull Hist Med. 2014 Spring : 161-194. doi:  10.1353/bhm.2014.0005 5) Auerbach, David M., et al., “Cluster of Cases of the Acquired Immune Deficiency Syndrome: Patients Linked by Sexual Contact.” The American Journal of Medicine 76, (March 1984) 487-92. 6) Thomas, M. et al. “Evolution The emergence of HIV/AIDS in the Americas and beyond“ Proc Natl Acad Sci 2007 Nov 20; 104(47): 18566–18570. Published online 2007 Oct 31. 7) Worobey, Michael, et al. “1970s and ‘Patient O’ HIV-1 Genomes Illuminate Early HIV/AIDS History in North America.” Nature 539, 98-101. 26 October 2016. 8) McNeil, Donald G., “H.I.V. Arrived in the U.S. Long Before ‘Patient Zero’”. New York Times, October 26, 2016. Mr. McNeil wrote a second article addressing the ethical issues. “The Ethics of Hunting Down ‘Patient Zero’” New York Times, October 29, 2016. 9) Bayer R1, Fairchild AL. “The Genesis of Public Health Ethics.” Bioethics. 2004 Nov;18(6):473-92.xi Ibid, 478 10) Bayer R1, Fairchild AL. “The Genesis of Public Health Ethics.” Bioethics. 2004 Nov;18(6):473-92.xi Ibid, 478 11) CDC MMWR Ebola Transmission Linked to a Single Traditional Funeral Ceremony April 17, 2015/64 (14); 386-388) 12)Mohammadi, Dara. “Finding Patient Zero.” The Pharmaceutical Journal. 17 Jan 2015, Vol 294, No 7845, online DOI: 10/1211/PJ.2015.200067543. 13)"Prosecutions for HIV Exposure in the United States, 2008–2013". The Center for HIV Law & Policy, Positive Justice Project. Retrieved.

Saidul Abrar, K. Ronis, Shahid Khan et al.

Matthew A. Butkus