Unmet financial burden of infertility care and the impact of state insurance mandates in the United States: analysis from a popular crowdfunding platform.

OBJECTIVE: To examine infertility-related fund-raising campaigns on a popular crowdfunding website and to compare campaign characteristics across states with and without legislative mandates for insurance coverage for infertility-related care. DESIGN: Retrospective cohort study. SETTING: Online crowdfunding platform (GoFundMe) between 2010 and 2020. PATIENT(S): GoFundMe campaigns in the United States containing the keywords "fertility" and "infertility." INTERVENTION(S): State insurance mandates for infertility treatment coverage. MAIN OUTCOME MEASURE(S): Primary outcomes included fund-raising goals, funds raised, campaign location, and campaigns per capita. RESULT(S): Of the 3,332 infertility-related campaigns analyzed, a total goal of $52.6 million was requested, with $22.5 million (42.8%) successfully raised. The average goal was $18,639 (standard deviation [SD] $32,904), and the average amount raised was $6,759 (SD $14,270). States with insurance mandates for infertility coverage had fewer crowdfunding campaigns per capita (0.75 vs. 1.15 campaigns per 100,000 population than states without insurance mandates. CONCLUSION(S): We found a large number of campaigns requesting financial assistance for costs associated with infertility care, indicating a substantial unmet financial burden. States with insurance mandates had fewer campaigns per capita, suggesting that mandates are effective in mitigating this financial burden. These data can inform future health policy legislation on the state and federal levels to assist with the financial burden of infertility.

Understanding the nature and dimensions of litigation crowdfunding: A visual analytics approach.

The escalating cost of civil litigation is leaving many defendants and plaintiffs unable to meet legal expenses such as attorney fees, court charges and others. This significantly impacts their ability to sue or defend themselves effectively. Related to this phenomenon is the ethics discussion around access to justice and crowdfunding. This article explores the dimensions that explain the phenomenon of litigation crowdfunding. Using data from CrowdJustice, a popular Internet fundraising platform used to assist in turning legal cases into publicly funded social cases, we study litigation crowdfunding through the lenses of the number of pledges, goal achievement, target amount, length of description, country, case category, and others. Overall, we see a higher number of cases seeking funding in the categories of human rights, environment, and judicial review. Meanwhile, the platform offers access to funding for other less prominent categories, such as voting rights, personal injury, intellectual property, and data & privacy. At the same time, donors are willing to donate more to cases related to health, politics, and public services. Also noteworthy is that while donors are willing to donate to education, animal welfare, data & privacy, and inquest-related cases, they are not willing to donate large sums to these causes. In terms of lawyer/law firm status, donors are more willing to donate to cases assisted by experienced lawyers. Furthermore, we also note that the higher the number of successful cases an attorney presents, the greater the amount raised. We analyzed valence, arousal, and dominance in case description and found they have a positive relationship with funds raised. Also, when a case description is updated on a crowdsourcing site, it ends up being more successful in funding-at least in the categories of health, immigration, and judicial review. This is not the case, however, for categories such as public service, human rights, and environment. Our research addresses whether litigation crowdfunding, in particular, levels the playing field in terms of opening up financing opportunities for those individuals who cannot afford the costs of litigation. While it may support social justice, ethical concerns with regards to the kinds of campaigns must also be addressed. Most of the ethical concerns center around issues relating to both the fundraisers and donors. Our findings have ethical and social justice implications for crowdfunding platform design.

Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

Medical crowdfunding has raised many ethical concerns, among them that it may undermine privacy, widen health inequities, and commodify health care. One motivation for medical crowdfunding has received particular attention among ethicists. Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they "promote misinformation about vaccines" and for treatment at a German clinic offering unproven cancer treatments due to "the need to make sure people are equipped to make well-informed decisions." GoFundMe has not taken any additional actions to regulate the much larger presence of campaigns seeking to fund unproven medical interventions on the platform. In this article, we make the ethical case for intervention by GoFundMe and other crowdfunding platforms.

Legal and ethical issues surrounding the use of crowdsourcing among healthcare providers.

As the pace of medical discovery widens the knowledge-to-practice gap, technologies that enable peer-to-peer crowdsourcing have become increasingly common. Crowdsourcing has the potential to help medical providers collaborate to solve patient-specific problems in real time. We recently conducted the first trial of a mobile, medical crowdsourcing application among healthcare providers in a university hospital setting. In addition to acknowledging the benefits, our participants also raised concerns regarding the potential negative consequences of this emerging technology. In this commentary, we consider the legal and ethical implications of the major findings identified in our previous trial including compliance with the Health Insurance Portability and Accountability Act, patient protections, healthcare provider liability, data collection, data retention, distracted doctoring, and multi-directional anonymous posting. We believe the commentary and recommendations raised here will provide a frame of reference for individual providers, provider groups, and institutions to explore the salient legal and ethical issues before they implement these systems into their workflow.

Democratización de la comunicación, aprendizaje mutuo y acción política colectiva: reflexiones desde Guatemala / Democratization of communication, mutual learning and collective action: Thoughts from Guatemala / Democratització de la comunicació, aprenentatge mutu i acció política col·lectiva: reflexions des de Guatemala

Cuidar del planeta es una responsabilidad común, para ello, el diálogo intercultural es ahora más necesario que nunca. Este artículo pretende analizar herramientas desarrolladas en Guatemala que promueven la democratización de la comunicación, el aprendizaje mutuo y la acción política colectiva para garantizar los derechos de los Pueblos Indígenas. Este análisis tiene el fin de brindar una oportunidad de aprender de voces ausentes en nuestros medios de comunicación, fomentar la cooperación y promover la crítica a las políticas de nuestros países que fomentan un sistema desigual e injusto a escala local y global

Caring for the planet is a shared responsibility. Thus, intercultural dialogue is now more necessary than ever. This article aims to analyse some tools developed in Guatemala that promote democratization of communication, mutual learning and collective action in order to guarantee the rights of Indigenous Peoples. These examples are presented here with the goal to encourage us to learn from absent voices in our media and to be more critical with respect to unequal and unfair policies in our countries, whether in a global or a local context

Cuidar del planeta és una responsabilitat comuna, per això, el diàleg intercultural és ara més necessari que mai. Aquest article pretén analitzar eines desenvolupades a Guatemala que promouen la democratització de la comunicació, l'aprenentatge mutu i l'acció política col·lectiva per a garantir els drets dels Pobles Indígenes. Aquest anàlisi vol brindar l'oportunitat d'aprendre de veus absents als nostres mitjans de comunicació, fomentar la cooperació i promoure la crítica a les polítiques dels nostres països que fomenten un sistema desigual i injust a escala local i global

Governing synthetic biology in the light of the Access and Benefit Sharing Regulation (ABS)

Synthetic biology is a change of paradigm, i.e. from the exploitation of natural and genetic resources to lab production of biological entities. This transitional shift represen15 a great challenge for developing countries, particularly those which host biodiversity, and users of genetic resources, since the latter might not be longer required to access to actual genetic resources (tangible genetic resources) but rather genetic resources' information (intangible genetic resources) in order to replicate those resources in labs. This could mean that users of genetic resource would not have to comply with the Convention on Biological Diversity (CBD) and i15 complementary treaty, the Nagoya Protocol, known also as the Access and Benefit Sharing regime (ABS). Both international instrument demands that States create legal mechanisms to secure access and benefit sharing, Le., users of genetic resources are required to obtain prior informed consent (PIC) from host countries of biodiversity and reach mutual agreed terms (MATs), in which users and countries agree how to share the benefi15 arise from the utilization of genetic resources. The ABS regime is particularly relevant since i15 implementation at national and regional level has created tensions between users of genetic resources and developing countries. This situation could lead to users removing interest in the exploitation of genetic resources, subsequently, meaning that their focus would move towards technologies that rely less on tangible genetic resources, including synthetic biology. This papers aim to discuss the scope of the CBD and the Nagoya Protocol in the light of synthetic biology and the implications for developing countries (AU)

La biología sintética es un cambio de paradigma, es decir, a partir de la explotación de 105 recursos naturales y genéticos para la producción en laboratorio de entidades biológicas. Este cambio de transición representa un gran desafío para los países en desarrollo, en particular para aquellos que albergan biodiversidad y para los usuarios de recursos genéticos, ya que ésta última podría no ser ya necesaria para acceder a los recursos genéticos reales (recursos genéticos tangibles), sino para la información de los recursos genéticos (recursos genéticos intangibles) con el fin de replicar esos recursos en los laboratorios. Esto podría significar que los usuarios de recursos genéticos no tendrían que cumplir con el Convenio sobre la Diversidad Biológica (CDB) y su tratado complementario, el Protocolo de Nagoya, conocido también como el régimen de Acceso y Participación en los Beneficios. Ambos instrumentos internacionales demandan que los Estados creen mecanismos legales que aseguren el acceso y distribución de beneficios, es decir, se requiere que los usuarios de recursos genéticos obtengan el consentimiento previo e informado de los países de acogida de la biodiversidad y que alcancen términos mutuamente acordados, y así usuarios y países están de acuerdo en cómo compartir los beneficios que se derivan de la utilización de los recursos genéticos. El régimen de Acceso y Participación en los Beneficios es particularmente relevante ya que su implementación a nivel nacional y regional ha creado tensiones entre los usuarios de recursos genéticos y los países en desarrollo. Esta situación podría conducir a que los usuarios retiren su interés en la explotación de los recursos genéticos, consecuentemente significaría que su objetivo se centraría hacia tecnologías que dependen menos de los recursos genéticos tangibles, como la biología sintética. Este trabajo tiene como fin discutir el alcance del Convenio sobre la Diversidad Biológica (CDB) y el Protocolo de Nagoya, con respecto a la biología sintética y sus implicaciones para los países en desarrollo (AU)