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Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining confidentiality, and paucity of treatments for diseases where natural history information may be limited). More than other areas of research, potential barriers include the lack of funding opportunities and appropriate review processes for applications to funding agencies. The ELSI Working Group of the International Rare Diseases Research Consortium (IRDiRC) performed an informal survey on ELSI funding initiatives to learn more about different funding mechanisms and to identify potential gaps in funding opportunities. The Working Group discusses these challenges and highlights the role of funding agencies and partners such as patient advocacy groups, specialists in social sciences and humanities, and clinicians to advance ELSI research in rare diseases.

Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 liver campaigns were included in study. These campaigns were coded for: worthiness of the campaign recipient, requested financial and non-monetary contributions, how monetary donations would be spent, and comments on the Canadian health system, among others. Results suggest Canadian organ donors, transplant candidates, recipients, and their families and caregivers experience significant financial difficulties not addressed by the public health system. Living and medication costs, transportation and relocation expenses, and income loss were the expenses most commonly highlighted by campaigners. Liver campaigns raised nearly half their goal while kidney campaigns received 11.5% of their requested amount. Findings highlight disease burden and the use of crowdfunding as a response to the extraordinary costs associated with organ transplantation. Although crowdfunding reduces some financial burden, it does not do so equitably and raises ethical concerns.

Food security, food sustainability, and malnutrition represent critical global challenges. Th urgency of comprehensive action is evident in the need for research collaboration between the food industry, agriculture, public health, and nutrition. This article highlights the role of philanthropy, of a non-profit organization, in supporting research and development and filling financial gaps. The article also explores the interplay of nutrition, agriculture, and government and policy, positioning philanthropy as a catalyst for transformative change and advocating for collaborative efforts to comprehensively address global food challenges. In addition, the discussion also underscores the ethical complexities surrounding charitable food aid, especially in terms of the dignity and autonomy of its recipients. The paper concludes by proposing future directions and implications, advocating for diversified intervention portfolios and collaborative efforts involving governments, businesses, and local communities. Apart from that, the importance of answering and alleviating ethical dilemmas related to food charity assistance needs to be a concern for future studies related to philanthropy because of the significant challenges faced by the contemporary food system, which include food security, health, and nutritional sustainability.

Lisa Lehmann and colleagues discuss how “grateful patient” programs that solicit donations from wealthy individuals who receive care may be problematic for physicians and propose policies that mitigate these risks. Please see later in the article for the Editors' Summary

ABSTRACT BACKGROUND Philanthropic contributions to academic medical centers from grateful patients support research, patient care, education, and capital projects. The goal of this study was to identify the ethical concerns associated with philanthropic gifts from grateful patients. METHODS A qualitative study design was selected. Investigators conducted in-depth semi-structured interviews with 20 Department of Medicine physicians at Johns Hopkins who were identified by Development Office staff as experienced and successful in this realm—those having relationships with multiple patients who have made philanthropic contributions. Interview transcripts were independently coded by two investigators. Content analysis identified several themes related to ethical concerns. RESULTS Eighteen informants (90 %) were Associate Professors or Professors; two (10 %) were females. Four thematic domains emerged related to ethical concerns associated with philanthropy from grateful patients: (i) impact of gift on the doctor–patient relationship; (ii) gift acquisition considered beyond the physician’s professional role; (iii) justice and fairness; and (iv) vulnerability of patients. Despite acknowledging at least one of the aforementioned concerns, eleven physician informants (55 %) expressed the view that there were no ethical issues involved with grateful patient philanthropy. CONCLUSIONS In this paper, we report that physicians involved in grateful patient philanthropy are aware of, and in some cases troubled by, the ethical concerns related to this activity. Further studies could examine how best to prepare faculty for the challenges that may accompany these gifts so as to help them maintain expected professional and ethical standards when accepting grateful patient philanthropy.

ObjectiveSocial media (SoMe) are gaining increasing acceptance among, and use by, healthcare service deliverers and workers. UK Helicopter Emergency Medical Services (HEMS) use SoMe to deliver service information and to fundraise, among other purposes. This article examines UK HEMS use of SoMe between January and February 2014 to determine the extent of adoption and to highlight trends in use.MethodsThe database of the Association of Air Ambulances, crosschecked with UK Emergency Aviation, was used to identify flying, charitable UK HEMS. This search identified 28 UK HEMS, of which 24 services met the criteria for selection for review. Using information harvested from the public domain, we then systematically documented SoMe use by the services.ResultsSoMe use by UK HEMS is extensive but not uniform. All selected UK HEMS maintained websites with blogs, as well as Facebook, Twitter, Wikipedia and JustGiving profiles, with the majority of services using Ebay for Charity, LinkedIn and YouTube. Some HEMS also held a presence on Pinterest, Google+, Instagram and Flickr, with a minority of services maintaining their own Rich Site Summary (RSS) feed.ConclusionsThe SoMe adopted, while varied, allowed for increased, and different forms of, information delivery by HEMS to the public, often in real time. Such use, though, risks breaching patient confidentiality and data protection requirements, especially when information is viewed cumulatively across platforms. There is an urgent need for the continued development of guidance in this unique setting to protect patients while UK HEMS promote and fundraise for their charitable activities.

Abstract Every year, the number of published research articles increases significantly. However, many potentially useful ideas are lost in this flood of data. Translational research provides a framework through which investigators or laboratories can maximize the likelihood that the product of their research will be adopted in medical practice. There are 2 recognizable models of translation appropriate for the majority of research: investigator driven and industry enabled. Investigator-driven research has more range because it does not have to consider the profit margin of research, but it is a slow process. The industry-enabled model accelerates the translational research process through the power of industry funding but is interested primarily in products with potential for profit. Two cases are examined to illustrate different methods of partnering with industry. IMRIS is a company founded by investigators to distribute intraoperative magnetic resonance imaging technology based on a movable high-field magnet. It took 7 years for IMRIS to make its first sale, but it is now a successful company. With neuroArm, a surgical robot, investigators decided to sell the intellectual property to an established company to ensure successful global commercialization. Translational research advances medicine by creating and distributing effective solutions to contemporary problems.