"We were leery of going": qualitatively exploring Canadian international retirement migrants' travel-related decisions during the COVID-19 pandemic.

BACKGROUND: International retirement migration, which is the seasonal or permanent relocation of older people to another country, has grown in popularity in recent years. These retirees are motivated by the promise of warmer winter climates that are conducive to participating in health-promoting recreational and social activities. Ease of cross-border travel facilitates this transnational practice when undertaken seasonally. However, border closures and other travel-related measures put in place to manage the spread of COVID-19, disrupted travel, including for older Canadians who typically winter in the United States (US). During the 2020-21 winter season, for example, Canadians were advised not to engage in non-essential international travel and the land border between Canada and the US was closed to all but essential travellers. Nonetheless, retirement migration remained a significant draw for many Canadian retirees. Here, we qualitatively explore the factors that Canadian international retirement migrants considered when deciding whether or not to travel to the US for the 2020-21 winter during the COVID-19 pandemic. METHODS: Guided by case study methodology, semi-structured interviews were conducted with 31 Canadian international retirement migrants who had wintered in the US prior to the COVID-19 pandemic and were in the US at the outset of the pandemic in late winter 2020. Interviews were transcribed verbatim and thematically analyzed to decipher what factors were most important to their travel-related decision-making during the pandemic. We structure the thematic results around four factors previously identified to motivate older people to become international retirement migrants and thus inform decision-making: the destination, the people, the cost, and the movement. RESULTS: The previously identified factors that motivate older people to participate in international retirement migration include: the destination (e.g., climate and amenities), the people (e.g., social networks), the cost (e.g., health insurance and living costs), and the movement (e.g., ease of travel). These factors informed how international retirement migrants made decisions to travel abroad or not in the 2020-21 winter season. For example, destination-based factors included a lack of public health measures and high case counts, people-based factors comprised of less opportunities to engage in social activities, cost-based factors involved maintaining property investments and the lack of COVID-19 treatment coverage in available travel health insurance plans, and movement-based factors included challenges in ease of access when travel was viewed as essential or non-essential. These factors disincentivized or motivated international retirement migrants to travel abroad in the 2020-21 winter season during the COVID-19 pandemic. CONCLUSIONS: The results of this study support the need to create tailored decision-support tools for international retirement migrants to make informed travel-related decisions during crisis events so as to protect their health and wellbeing. More research is needed to explore perceptions of risk, especially health risks, among international retirement migrants and how they differently affect their travel-related decisions.

Abortion-related crowdfunding post-Dobbs.

Previous research on abortion-related crowdfunding campaigns found that they are impacted by stigma around abortion and rarely successful. This paper analyzes crowdfunding activity in the US following a leak of the Supreme Court decision in Dobbs. V. Jackson Women's Health Organization, a time period that saw increased financial support of abortion access funds. Crowdfunding campaigns that included "abort" or "abortion" and were created between May 2 and November 8, 2022 were recorded from the GoFundMe and GiveSendGo crowdfunding platforms. These campaigns were reviewed for whether they were US based and sought funding where abortion was used as a justification for support. Included campaigns were assigned a campaign recipient type: (1) Organizations providing abortion access; (2) Organizations seeking legal protection for abortion; (3) Individuals seeking abortion access; (4) Organizations seeking to reduce abortion access; and (5) Individuals with needs resulting from choosing not to access abortion. The authors also identified four types of rationale for supporting these campaigns. Following a leak of the Dobbs decision, 398 abortion-related crowdfunding campaigns in the US raised over $3.8 million from over 50,000 donations. Campaigns supporting abortion access organizations raised higher median amounts than organizations seeking to reduce abortion access. Individuals seeking abortion access raised higher median amounts than individuals who chose not to terminate a pregnancy. In a reversal from pre-Dobbs crowdfunding, abortion access campaigns tended to outperform other abortion-related campaigns. It is not clear how long-lived this change in support will be and campaigners remain vulnerable to changes in platforms' content moderation policies.

Vaccine related crowdfunding on a 'Freedom Fundraising' platform.

INTRODUCTION: Donation-based crowdfunding was heavily used during the COVID-19 pandemic. While most of these campaigns were uncontroversial, others spread misinformation or undermined public health. In response, mainstream crowdfunding platforms like GoFundMe restricted what campaigns they would host. This led some campaigns to shift to lesser-known and less restrictive crowdfunding platforms. While research on health-related misinformation on mainstream crowdfunding platforms is increasing, less is known about crowdfunding on less restrictive platforms like GiveSendGo. The aim of this study is to review vaccine-related crowdfunding campaigns on the GiveSendGo platform to better understand: 1) how vaccines are portrayed on GiveSendGo; and 2) how successful these campaigns have been at attracting financial support. METHODS: We searched the GiveSendGo crowdfunding platform for campaigns including "vaccine" or "vaccination". This process yielded 907 unique results which were then scraped for their campaign text and fundraising data. The authors reviewed these campaigns for fundraisers whose aims related to vaccines for humans and assigned campaigns as being for 1) Accessing vaccines; 2) creating Spaces for the unvaccinated; 3) helping Unvaccinated Individuals); 4) Advocacy about vaccines; 5) supporting Anti-Mandate actions; and 6) responding to Vaccine Injuries. FINDINGS: We identified 765 crowdfunding campaigns that raised $6,814,817 and requested $838,578,249. Anti-Mandate campaigns were most common, followed by Unvaccinated Individuals, Vaccine Injuries, Advocacy, Access, and Spaces. Only Access campaigns took a positive or neutral view toward vaccines. Themes of freedom and religion cut across campaign types with campaigns critical of vaccines invoking bodily autonomy and religious freedom as justifying their fundraisers. DISCUSSION: Very few of these fundraisers met their goals. With the exception of Access campaigns, they frequently contained highly polarizing language advocating against public health mandates, misinformation about vaccine safety, and language from bioethics and reproductive choice advocates. Restrictions on vaccine-related campaigns on the GoFundMe platform likely drove campaign creation on GiveSendGo.

Advertising Alternative Cancer Treatments and Approaches on Meta Social Media Platforms: Content Analysis.

BACKGROUND: Alternative cancer treatment is associated with a greater risk of death than cancer patients undergoing conventional treatments. Anecdotal evidence suggests cancer patients view paid advertisements promoting alternative cancer treatment on social media, but the extent and nature of this advertising remain unknown. This context suggests an urgent need to investigate alternative cancer treatment advertising on social media. OBJECTIVE: This study aimed to systematically analyze the advertising activities of prominent alternative cancer treatment practitioners on Meta platforms, including Facebook, Instagram, Messenger, and Audience Network. We specifically sought to determine (1) whether paid advertising for alternative cancer treatment occurs on Meta social media platforms, (2) the strategies and messages of alternative cancer providers to reach and appeal to prospective patients, and (3) how the efficacy of alternative treatments is portrayed. METHODS: Between December 6, 2021, and December 12, 2021, we collected active advertisements from alternative cancer clinics using the Meta Ad Library. The information collected included identification number, URL, active/inactive status, dates launched/ran, advertiser page name, and a screenshot (image) or recording (video) of the advertisement. We then conducted a content analysis to determine how alternative cancer providers communicate the claimed benefits of their services and evaluated how they portrayed alternative cancer treatment efficacy. RESULTS: We identified 310 paid advertisements from 11 alternative cancer clinics on Meta (Facebook, Instagram, or Messenger) marketing alternative treatment approaches, care, and interventions. Alternative cancer providers appealed to prospective patients through eight strategies: (1) advertiser representation as a legitimate medical provider (n=289, 93.2%); (2) appealing to persons with limited treatments options (n=203, 65.5%); (3) client testimonials (n=168, 54.2%); (4) promoting holistic approaches (n=121, 39%); (5) promoting messages of care (n=81, 26.1%); (6) rhetoric related to science and research (n=72, 23.2%); (7) rhetoric pertaining to the latest technology (n=63, 20.3%); and (8) focusing treatment on cancer origins and cause (n=43, 13.9%). Overall, 25.8% (n=80) of advertisements included a direct statement claiming provider treatment can cure cancer or prolong life. CONCLUSIONS: Our results provide evidence alternative cancer providers are using Meta advertising products to market scientifically unsupported cancer treatments. Advertisements regularly referenced "alternative" and "natural" treatment approaches to cancer. Imagery and text content that emulated evidence-based medical providers created the impression that the offered treatments were effective medical options for cancer. Advertisements exploited the hope of patients with terminal and poor prognoses by sharing testimonials of past patients who allegedly were cured or had their lives prolonged. We recommend that Meta introduce a mandatory, human-led authorization process that is not reliant upon artificial intelligence for medical-related advertisers before giving advertising permissions. Further research should focus on the conflict of interest between social media platforms advertising products and public health.

Contraceptive Use and Missed Opportunities for Family Planning Discussions in Women Living with Human Immunodeficiency Virus at an HIV Clinic.

The objective of this study was to examine contraception use and family planning discussions (FPD) in female people living with HIV (PLWH). A retrospective cohort study was conducted. Female PLWH were included if they were 18-44 years and received care in 2019 at an HIV clinic. 74 patients met inclusion; mean age was 35 years, 53% were white. All patients were prescribed antiretroviral therapy. 48.6% of patients had documented FPD. 64.9% of patients were using contraception; sterilization was most common (41.7%). Only five patients had a contraindication to hormonal contraception. No differences in contraception use were observed based on age, race, HIV viral load, number of visits, or past pregnancies. However, patients with documented FPD were more likely to use contraception (OR 4.55; 95% CI 1.35-15.29). Routine FPD and contraception use in female PLWH were low. Rates of sterilization were high in female PLWH. Providing quality family planning services is critical to increase contraception use and selection of the most appropriate contraception form.

Revisiting the Ethics of Circumvention Tourism.

In the context of medical tourism, circumvention tourism consists of traveling abroad with the intention of participating in a health-related activity that is prohibited in one's own country but not in the destination country. This practice raises a host of legal and ethical questions that focus on how the traveler should be treated once they have returned home. Joshua Shaw1 deftly shows that the question of whether circumvention tourists should be punished in their home countries is not something that can be answered in principle and without reference to the prima facie morality of the prohibition. This implicates formalist accounts of circumvention tourism developed by Pennings2 and Huxtable3 that argue against punishing travelers who access fertility treatments and medical assistance in dying abroad on the grounds that civic peace and stability require opportunities for individuals to travel internationally to access domestically prohibited medical services.

Crowdfunding narratives and the valuation of vaccines for COVID-19.

Social media spreads information about vaccines and can be used to better understand public attitudes about them. Using American crowdfunding campaigns that mentioned COVID-19 vaccines from January 2020 to March 2021, this paper investigates public attitudes towards vaccines, specifically the perceived role vaccines could (or couldn't) play in ending the pandemic. We identified 776 crowdfunding campaigns and coded each for their aims and whether they valued vaccines as returning their community to a pre-pandemic state (utopian), helping some but not all people (cautious), and doubtful about the likely positive impacts of vaccines (skeptical). Cautious and skeptical valuations increased over time whereas utopian views declined. This paper uniquely situates attitudes toward COVID-19 vaccines in the context of financial need (as characterized by the campaigners). It offers insight into the "vaccine class gap" in America and demonstrates the usefulness of crowdfunding campaigns for assessing public views on vaccines.

Relational, community-based and practical: Support systems used by Canadian spousal caregivers living seasonally in the United States.

Every year tens of thousands of older Canadians travel to the southern United States (US) to live there seasonally during the winter months to enjoy a warmer climate-a practice known as international retirement migration. Several factors facilitate participation in this transnational mobility, including having the financial resources needed to live abroad. For those managing chronic or acute health conditions, traveling with a caregiver (typically a spouse) is another important facilitator. In this qualitative analysis, we explore the transnational systems of support that Canadian international retirement migrant spousal caregivers draw upon to enable them to provide care while in the US. We report on the findings of ten semi-structured dyad interviews (n = 20 participants) conducted with Canadian international retirement migrants living seasonally in Yuma, Arizona. The dyads consisted of spouses, one of whom had defined care needs and the other of whom provided informal care. Through thematic analysis of these interviews, we identified three types of transnational support systems that spousal caregivers draw on: relational, community-based and practical. While aspects of these support systems have been documented in other informal care-giving studies, this analysis demonstrates their copresence in the transnational care-giving context associated with international retirement migration. Overall, this analysis highlights the benefits of close social relations enjoyed by international retirement migrants providing informal care to mitigate the lack of access to their established support networks at home.

Qualitatively exploring the intersection of health and housing needs in Canadian crowdfunding campaigns.

BACKGROUND: Online crowdfunding platforms such as GoFundMe fundraise millions of dollars annually for campaigners. Medical crowdfunding is a very popular campaign type, with campaigners often requesting funds to cover basic health and medical care needs. Here we explore the ways that health needs intersect with housing needs in Canadian crowdfunding campaigns. In Canada, both health and housing needs may be addressed through legislative or policy intervention, are public health priorities, and are perceived as entitlements related to people's basic human rights. We specifically develop a classification scheme of these intersections. METHODS: We extensively reviewed Canadian crowdfunding campaigns on GoFundMe, the largest charitable crowdfunding platform, using a series of keywords to form the basis of the classification scheme. Through this process we identified five categories of intersection. We extracted 100 campaigns, 20 for each category, to ascertain the scope of these categories. RESULTS: Five categories form the basis of the classification scheme: (1) instances of poor health creating the need to temporarily or permanently relocate to access care or treatment; (2) house modification funding requests to enhance mobility or otherwise meet some sort of health-related need; (3) campaigns posted by people with health needs who were not able to afford housing costs, which may be due to the cost of treatment or medication or the inability to work due to health status; (4) campaigns seeking funding to address dangerous or unhealthy housing that was negatively impacting health; and (5) people describing an ongoing cyclical relationship between health and housing need. CONCLUSIONS: This analysis demonstrates that health and housing needs intersect within the crowdfunding space. The findings reinforce the need to consider health and housing needs together as opposed to using a siloed approach to addressing these pressing social issues, while the classification scheme assist with articulating the breadth of what such co-consideration must include.

Analyzing natural herd immunity media discourse in the United Kingdom and the United States.

Natural herd immunity, where community-acquired infections in low-risk populations are used to protect high risk populations from infection-has seen high profile support in some quarters, including through the Great Barrington Declaration. However, this approach has been widely criticized as ineffective and misinformed. In this study, we examine media discourse around natural herd immunity in the United States (US) and United Kingdom (UK) to better understand how this approach was promoted. Country-specific news media publications between March 11, 2020 and January 31, 2021 were searched for references to herd immunity. News articles focused on herd immunity and including a stakeholder quote about herd immunity were collected, resulting in 400 UK and 144 US articles. Stakeholder comments were then coded by name, organization, organization type, and concept agreement or disagreement. Government figures and a small but vocal coalition of academics played a central role in promoting natural herd immunity in the news media whereas critics were largely drawn from academia and public health. These groups clashed on whether: natural herd immunity is an appropriate and effective pandemic response; the consequences of a lockdown are worse than those of promoting herd immunity; high-risk populations could be adequately protected; and if healthcare resources would be adequate under a herd immunity strategy. False balance in news media coverage of natural herd immunity as a pandemic response legitimized this approach and potentially undermined more widely accepted mitigation approaches. The ability to protect high risk populations while building herd immunity was a central but poorly supported pillar of this approach. The presentation of herd immunity in news media underscores the need for greater appreciation of potential harm of media representations that contain false balance.

Spatial and temporal patterns in Canadian COVID-19 crowdfunding campaigns.

Online charitable crowdfunding has become an increasingly prevalent way for Canadians to deal with costs that they would otherwise not be able to shoulder on their own. With the onset of COVID-19 and related lockdown measures, there is evidence of a surge in crowdfunding use relating to the pandemic. This study gathered, classified, and analysed Canadian crowdfunding campaigns created in response to COVID-19 from GoFundMe.com, a popular crowdfunding platform. Spatio-temporal analysis of classified campaigns allowed for observation of emergent trends in the distribution of pandemic-related need incidence and financial support throughout the pandemic. Campaigns raising money on behalf of established charities were the most common in the sample, and accounted for the greatest portion of funding raised, while campaigns for businesses made up a small proportion. Dense metropolitan areas accounted for the vast majority of campaign locations, and total sample funding was disproportionately raised by campaigners in Ontario and British Columbia.

Selling cannabidiol products in Canada: A framing analysis of advertising claims by online retailers.

BACKGROUND: In Canada, the legalization of cannabis has enabled cannabidiol (CBD) to become a popular commercial product, increasingly used for medical or therapeutic purposes. There are currently over one thousand CBD products available globally, ranging from oil extracts to CBD-infused beverages. Despite increased usage and availability, the evidence supporting the medical efficacy of CBD is limited. Anecdotal evidence suggests CBD sellers represent their products for medical use through direct medical claims or advice, which in Canada, is not allowed under the Cannabis Act without Health Canada approval. However, it is not clear the extent of sellers making health claims or other strategies used to promote medical usage of CBD. The objective of this study is to determine how CBD sellers advertise their products online to consumers. METHODS: The product descriptions of 2165 CBD products from 70 websites selling CBD products for human consumption in Canada were collected from January 14th, 2020 to February 2nd, 2020 using an automated website scraper tool. A framing analysis was used to determine how CBD sellers frame their products to prospective customers. The specific medical conditions CBD is represented to treat and product forms were tabulated. RESULTS: CBD products are framed to prospective customer through three distinct frames: a specific cure or treatment (n = 1153), a natural health product (n = 872), and a product used in certain ways to achieve particular results (n = 1388). Product descriptions contained medical or therapeutic claims for 171 medical conditions and ailments, with 53.3% of products containing at least one claim. The most prevalent claims found in product descriptions were the ability to treat or manage pain (n = 824), anxiety (n = 609), and inflammation (n = 545). Claims were found for treating or managing serious and-life-threatening illnesses such as multiple sclerosis (n = 210), arthritis (n = 179), cancer (n = 169), Crohn's disease (n = 78), Parkinson's disease (n = 59), and human immunodeficiency virus (HIV) (n = 54). CBD most often came in oil/tincture/concentrate form (n = 755), followed by edibles (n = 428), and vaporizer pen/cartridge/liquid products (n = 290). CONCLUSION: The findings suggest CBD is represented as a medical option for numerous conditions and ailments. We recommend Health Canada to conduct a systematic audit of companies selling CBD for regulatory adherence.

What are the informational pathways that shape people's use of cannabidiol for medical purposes?

BACKGROUND: Cannabidiol (CBD) is commonly used to manage symptoms in conditions and diseases for which there is limited clinical research for its application. How consumers arrive and decide to use CBD for medical treatment, despite lacking clinical evidence, is largely unknown. In this paper, we seek to identify the informational pathways through which consumers arrive at CBD for medical purposes. METHODS: GoFundMe.com campaigns fundraising to purchase CBD between June 2017 and May 2019 were collected using the Crowdfunding for Health Research Portal (CHRP). Product descriptions were thematically analyzed to determine pathways leading to incorporation of CBD into medical treatment. Campaign characteristics such as fundraising ask, funding received, location, campaign title, description, Facebook shares, and number of donors were recorded. Specific medical uses of CBD proposed in campaigns were tabulated. RESULTS: The study identified 164 crowdfunding campaigns primarily from the USA (n=159), with several from Canada (n=5). The campaigns requested $2,219,284.24 (median, $7000) and raised $610,612.87 (median, $1805) from 6825 donors (median, 26). Many campaigns asked for other treatments or illness-related costs not specific to CBD. The campaigns were shared 42,299 times on Facebook (median, 156 shares). Three informational pathways were identified leading to incorporation of CBD into medical treatment, which were self-directed research (n=149), recommendations from a trusted care provider (n=36), and/or experiential insights shared by someone associated with or influencing the crowdfunders personal network (n=30). The proposed uses of CBD were for cancer (n=96), seizure-inducing diseases/conditions (n=48), other/unspecified (n=6), joint/inflammatory diseases (n=6), mental health disorders (n=3), nervous system diseases (n=3), and autoimmune diseases (n=2). CONCLUSIONS: Our results suggest that consumers crowdfunding come to CBD through internally motivated reasons versus exposure to advertisements or other forms of marketing. Campaign beneficiaries generally had an unmet medical need that other forms of treatment were not satisfying. Then, through one or more of the informational pathways identified, CBD is considered a potential solution.

Ethical issues concerning a pay-to-participate stem cell study.

In our critique of a pay-to-participate study, we address how the failure to disclose study-related payments appears to have violated STEM CELLS Translational Medicine's editorial policies concerning conflict-of-interest and financial disclosure. Our analysis also identifies broader ethical issues and scientific concerns related to pay-to-participate studies conducted by businesses with a record of selling purported stem cell treatments before determining whether the products they sell are safe and efficacious. Authors of peer-reviewed articles have a responsibility to comply with journal policies and disclose financial conflicts of interest to editors, reviewers, and readers. Authors should also disclose when stem cell interventions being tested in clinical trials have already been sold on a direct-to-consumer basis as "stem cell treatments" by authors' affiliate institutions. Financial conflicts of interest and other forms of possible bias must be disclosed to put clinical studies in context and facilitate the critical assessment of research methods, findings, and conclusions. The apparent failure to comply with journal editorial policies and disclose such financial conflicts warrants careful investigation.

"If you have a pain, get on a plane": qualitatively exploring how short-term Canadian international retirement migrants prepare to manage their health while abroad.

BACKGROUND: Every year, tens of thousands of older Canadians travel abroad during the winter months to enjoy warmer destinations that offer social and recreational opportunities. How do these Canadians prepare to manage their health while abroad? In this analysis we explore this question by developing a typology of preparatory strategies. METHODS: Semi-structured interviews were conducted with 19 older Canadians living seasonally in Yuma, Arizona (United States). Interviews were transcribed verbatim and thematically analysed to form the basis of a typology of preparatory strategies. RESULTS: Four distinct preparatory strategies form the typology that summarizes how Canadian international retirement migrants prepare to manage their health while abroad. First, some participants became thoroughly prepared by gathering information from multiple sources and undertaking specific preparatory activities (e.g., visiting a travel medicine clinic, purchasing travel health insurance, bringing prescription refills). Second, some participants were preparation-adverse and relied on their abilities to address health needs and crises in-the-moment. Third, some participants became well informed about things they could do in advance to protect their health while abroad (e.g., purchasing travel health insurance) but opted not to undertake preparatory actions. A final group of participants prepared haphazardly. CONCLUSIONS: This typology can assist health care providers in international retirement migrant destinations to appreciate differences among this patient population that is often characterized as being relatively homogenous. More research is needed to determine if these preparatory strategies are common in other mobile populations and if they are found in other destinations popular with international retirement migrants.

Crowdfunding Campaigns and COVID-19 Misinformation.

Objectives. To understand whether and how crowdfunding campaigns are a source of COVID-19-related misinformation.Methods. We searched the GoFundMe crowdfunding platform using 172 terms associated with medical misinformation about COVID-19 prophylaxes and treatments. We screened resulting campaigns for those making statements about the ability of these searched-for or related terms to prevent or treat COVID-19.Results. There were 208 campaigns worldwide that requested $21 475 568, raised $324 305 from 4367 donors, and were shared 24 158 times. The most discussed interventions were dietary supplements and purported immune system boosters (n = 231), followed by other forms of complementary and alternative medicine (n = 24), and unproven medical interventions (n = 15). Most (82.2%) of the campaigns made definitive efficacy claims.Conclusions. Campaigners focused their efforts on dietary supplements and immune system boosters. Campaigns for purported COVID-19 treatments are particularly concerning, but purported prophylaxes could also distract from known effective preventative approaches. GoFundMe should join other online and social media platforms to actively restrict campaigns that spread misinformation about COVID-19 or seek to better inform campaigners about evidence-based prophylaxes and treatments.

What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease.

Lyme disease remains a contested illness in Canada, thereby making the diagnostic and treatment journeys difficult for some people. One outcome of this is that increasing numbers of people are turning to medical crowdfunding to support access to alternative therapies, non-local health care providers and assist with managing the costs of everyday life. In this analysis, we qualitatively explore the narratives shared in Canadians' crowdfunding campaigns to support Lyme disease treatment or diagnosis to identify whether or not any common elements shared in these narratives exist, and if so, what they are. We identified 238 campaigns for inclusion from three prominent crowdfunding platforms. Thematic analysis of the campaign narratives shows four consistent themes shared in these campaigns: what is lost (e.g. bodily ability), what is missing (e.g. local care options), what is sought (e.g. funds to cover treatment abroad) and what is hoped for (e.g. return to wellbeing). These themes demonstrate the highly personal and emotional nature of medical crowdfunding, particularly in the context of a contested illness that may lead some to question the legitimacy of one's financial need. This analysis contributes valuable new insights to the nascent scholarship on medical crowdfunding, and particularly to our understanding of how people communicate about their health and bodily needs on this public platform. It also identifies important directions for future research, including the potential for crowdfunding narratives to be used for advocacy.

Crowdfunding, stem cell interventions and autism spectrum disorder: comparing campaigns related to an international "stem cell clinic" and US academic medical center.

BACKGROUND AIMS: Studies examining crowdfunding campaigns for stem cell interventions have typically focused on campaigns seeking funds to send individuals to businesses marketing unlicensed and unproven stem cell products. However, some crowdfunding campaigns identify academic medical centers as destinations for individuals seeking access to stem cell products provided either in clinical studies or on an expanded access basis. This study examines crowdfunding campaigns seeking funds to enable children diagnosed with autism spectrum disorder access to stem cell interventions. METHODS: This study compares and contrasts crowdfunding campaigns, identifying an international stem cell clinic marketing a purported umbilical cord blood-derived stem cell treatment for autism spectrum disorder, with campaigns soliciting donations intended to help children with autism spectrum disorder either participate in clinical studies or obtain expanded access to stem cell products provided at an academic medical center in the US. RESULTS: Campaigns connected to both sites contained inaccurate claims. However, campaigns identifying the international clinic as the intended destination site made stronger claims about efficacy and were more reliant upon testimonials than campaigns listing the US-based academic medical center as the planned clinical site. Acknowledging these important distinctions, clinical studies and press releases associated with the academic medical center played an important role in lending the perception of credibility to the putative stem cell treatments marketed by the international clinic. CONCLUSIONS: The study's findings emphasize how important it is for researchers at academic medical centers and comparable research facilities to avoid engaging in stem cell hyperbole; highlight the preliminary nature of early clinical studies; ensure that any claims about safety and efficacy are based upon robust and reliable evidence; and promote responsible science communication by exercising restraint when crafting press releases, conducting media interviews and otherwise publicizing clinical research findings.

Is there room for privacy in medical crowdfunding?

When people use online platforms to solicit funds from others for health-related needs, they are engaging in medical crowdfunding. This form of crowdfunding is growing in popularity, and its visibility is increasing as campaigns are commonly shared via social networking. A number of ethical issues have been raised about medical crowdfunding, one of which is that it introduces a number of privacy concerns. While campaigners are encouraged to share very personal details to encourage donations, the sharing of such details may result in privacy losses for the beneficiary. Here, we explore the ways in which privacy can be threatened through the practice of medical crowdfunding by exploring campaigns (n=100) for children with defined health needs scraped from the GoFundMe platform. We found specific privacy concerns related to the disclosure of private details about the beneficiary, the inclusion of images and the nature of the relationship between campaigner, funding recipient and beneficiary. For example, it was found that identifying personal and medical details about the beneficiary, including symptoms (n=52) and treatment history (n=43), were often mentioned by campaigners. While the privacy concerns identified are problematic, they are also difficult to remedy given the strong financial incentive to crowdfund. However, crowdfunding platforms can enhance privacy protections by, for example, requiring those campaigning on behalf of child beneficiaries to ensure consent has been obtained from their guardians and providing additional guidelines for the inclusion of personal information in campaigns made on behalf of those not able to give their consent to the campaign.