Promoting inclusive metrics of success and impact to dismantle a discriminatory reward system in science

Success and impact metrics in science are based on a system that perpetuates sexist and racist “rewards” by prioritizing citations and impact factors. These metrics are flawed and biased against already marginalized groups and fail to accurately capture the breadth of individuals’ meaningful scientific impacts. We advocate shifting this outdated value system to advance science through principles of justice, equity, diversity, and inclusion. We outline pathways for a paradigm shift in scientific values based on multidimensional mentorship and promoting mentee well-being. These actions will require collective efforts supported by academic leaders and administrators to drive essential systemic change.

This Essay argues that success and impact metrics in science are based on a system that perpetuates sexist and racist ‘rewards’ by prioritizing citations and impact factors; the authors advocate shifting this outdated value system to advance science through principles of justice, equity, diversity, and inclusion.     

Political advocacy by the American Society for Cell Biology and its partners

I trace how the American Society for Cell Biology became a strong political advocate for the scientific community. I celebrate how good leadership and an effective staff enabled its energetic volunteer organization to have an impact, but I also ask how the effort can be made more successful.Many scientists take for granted that their scientific societies advocate for the well being of their individual members and the health of science. However, advocacy is a relatively recent development that emerged over the past two decades. Advocacy is essential in a democracy because science competes for taxpayer dollars with every other activity supported by the federal government. Advocacy is also important to ensure that lawmakers adopt sensible policies. I review how the American Society for Cell Biology (ASCB) and its allies learned how to fulfill this obligation, and I ask the reader to join the effort. The objective of these advocacy efforts is to influence political decisions through education and information, but the efforts by scientific societies are completely nonpartisan. Support from both political parties is essential to meet our goals.During the 1970s and 1980s biomedical scientists discussed federal funding and public policies that affected our science. Each year the public policy staff of the Federation of Societies of Experimental Biology (FASEB) helped member societies reach a consensus recommendation on the level of federal funding for the biosciences. However, we tended to talk to ourselves because we lacked effective ways to communicate with politicians or the outside world. For the most part we relegated the responsibility for advocacy to medical school deans and presidents of research universities. Their professional associations—the American Association of Medical Colleges (AAMC) and the Association of American Universities (AAU)—generally did a reasonable job of representing the interests of the scientists who worked at their schools.     

The burden of service for faculty of color to achieve diversity and inclusion: the minority tax

The exclusion of Blacks/African-Americans, Latinx/Hispanics, and Indigenous people from science has resulted in their underrepresentation in the biomedical workforce, especially in academia. Faculty diversity at academic institutions is unacceptably low (<6%) and has remained unchanged in the past 20 years. Despite low representation, faculty of color are disproportionately tasked with service to enhance diversity and inclusion of the academy, often to the detriment of their research and academic success. This essay offers a perspective on the undue burden of service placed on underrepresented faculty to achieve institutional diversity and inclusion. I reflect on the challenges that faculty of color face trying to maintain a competitive research program while serving the needs of the academy, often in a capacity greater than that of their well-represented peers. I also discuss opportunities for faculty of color to leverage related diversity and inclusion work to boost their career progression and academic advancement.

JoAnn Trejo     

Unconventional allies: interdisciplinary approaches to science policy and funding

Scientific research is an often misunderstood, undervalued and yet essential activity. Many nonscientists think that research is quick and easy, and that science is a compilation of established facts rather than rigorous conclusions based on available evidence. In addition, many nonscientists, and perhaps many scientists as well, forget that our social and financial investment is small relative to the massive and expensive problems that we all want scientific research to solve. Using biomedical research in the United States as an example, I will argue that countering this underinvestment in science will require broadening perspectives in the scientific community as well as coupling expanded individual advocacy and education efforts to an interdisciplinary advocacy approach. This approach is in many ways analogous to the unique solutions that emerge when scientists working in different disciplines leave their intellectual silos and work together.     

Supporting families involved in court cases about life‐sustaining treatment: Working as academics,advocates and activists

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology—giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda—imposed by the British Research Excellence Framework— for our actions as scholar‐activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research—helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy.     

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.     

Standardization,workforce development and advocacy in cell and gene therapies: a summary of the 2020 Regenerative Medicine InterCHANGE

Cell and gene therapy is a promising and disruptive new field of medicine for diseases lacking effective treatments. Collaboration among stakeholders has become critically important as investigators, health care providers, manufacturers, couriers, data registries, regulators and payers all become more invested in the success of this field. Many organizations have collaborated with each other to increase clarity, advocate for improvements and share lessons learned. These efforts appear to be making an impact, although the potential for duplicative efforts could slow progress. The second Regenerative Medicine InterCHANGE, hosted by the Foundation for the Accreditation of Cellular Therapy, took place at the Phacilitate Leaders World/World Stem Cell Summit conference in Miami, Florida, on January 24, 2020. Participants from several organizations outlined needs to advance cell and gene therapies. Efforts to address these include standardization, workforce development and advocacy. This article summarizes the major challenges and opportunities discussed during the InterCHANGE.     

Toward a More Progressive Art Education

From an administrative perspective, this article investigates equity issues in dance education, and current challenges and opportunities for leadership in postsecondary dance programs involved in teacher education and certification. Although dance education is varied in content and environment, much is shared in terms of common goals for gender equity, curricular equity, status of dance education, and diversity in the field. The author urges dance educators and administrators to actively emphasize and act on commonly shared goals, rather than focusing on differences that have historically served to separate the field. The article provides recommendations and strategies for advocacy and development focused on enduring values of dance education rooted in art making, creativity, experimentation, and the importance of artistic expression in education.     

The Challenging Road towards a Unified Animal Research Network in Europe

Animal models are key in biomedical research as a proof of concept to study complex processes in a physiological context. Despite the small yet crucial role animals play in fundamental and applied research, the value of animal research is recurrently undermined. Lack of openness and transparency encourages misconceptions, which can have a dramatic negative impact on science and medicine. Research centres should use all available resources to ensure that relevant details about their use of animals in research are readily accessible. More concerted efforts by professional advocacy groups devoted to informing about the benefits of biomedical animal research are also crucial. The European Animal Research Association acts as an umbrella organisation providing support to national advocacy groups and coordinating actions in countries in which no advocacy group exists.     

Module six: special issues

The objective of this module is to cover ground that was not covered in-depth in any of the other modules, including: scientific misconduct, issues concerning the publication and ownership of research results (authorship guidelines - who is eligible to be considered an author, or contributor to a scientific paper etc.), special problems occurring in social science and epidemiological research, and the problems pertaining to conflicts of interest the various players in biomedical research activities could encounter.     

LINKING INTERNATIONAL RESEARCH TO GLOBAL HEALTH EQUITY: THE LIMITED CONTRIBUTION OF BIOETHICS

Health research has been identified as a vehicle for advancing global justice in health. However, in bioethics, issues of global justice are mainly discussed within an ongoing debate on the conditions under which international clinical research is permissible. As a result, current ethical guidance predominantly links one type of international research (biomedical) to advancing one aspect of health equity (access to new treatments). International guidelines largely fail to connect international research to promoting broader aspects of health equity – namely, healthier social environments and stronger health systems. Bioethical frameworks such as the human development approach do consider how international clinical research is connected to the social determinants of health but, again, do so to address the question of when international clinical research is permissible. It is suggested that the narrow focus of this debate is shaped by high‐income countries' economic strategies. The article further argues that the debate's focus obscures a stronger imperative to consider how other types of international research might advance justice in global health. Bioethics should consider the need for non‐clinical health research and its contribution to advancing global justice.     

Frontiers of biomedical text mining: current progress

It is now almost 15 years since the publication of the first paper on text mining in the genomics domain, and decades since the first paper on text mining in the medical domain. Enormous progress has been made in the areas of information retrieval, evaluation methodologies and resource construction. Some problems, such as abbreviation-handling, can essentially be considered solved problems, and others, such as identification of gene mentions in text, seem likely to be solved soon. However, a number of problems at the frontiers of biomedical text mining continue to present interesting challenges and opportunities for great improvements and interesting research. In this article we review the current state of the art in biomedical text mining or 'BioNLP' in general, focusing primarily on papers published within the past year.     

Focus: Preventive Medicine: Before the Bullets Fly: The Physician’s Role in Preventing Firearm Injury

Firearm injury is a disease that is disproportionately prevalent in the United States. When a bullet hits a human being, it brings together multiple structural determinants of health into one acute, life-changing event. Firearm injury can lead to long-term mental and physical challenges for individuals, families, and communities. Despite the impact of this disease, physicians often underestimate their role in not only treating but also preventing firearm injury. Physicians can intervene through screening, counseling, community engagement, and advocacy, and can mobilize the health care systems they serve to engage with injury prevention. Physicians also play a key role in expanding the knowledge base on firearm injury through much-needed research on the epidemiology, context, and outcomes of firearm injury. When we treat firearm injury as a disease, we can develop and implement interventions from the clinic to the statehouse that can curb profound harms. This work and these opportunities belong not only to emergency physicians and trauma surgeons, but to all fields that evaluate and assess patients over the life course.     

Tailoring science outreach through E-matching using a community-based participatory approach

In an effort to increase science exposure for pre-college (K-12) students and as part of the science education reform agenda, many biomedical research institutions have established university-community partnerships. Typically, these science outreach programs consist of pre-structured, generic exposure for students, with little community engagement. However, the use of a medium that is accessible to both teachers and scientists, electronic web-based matchmaking (E-matching) provides an opportunity for tailored outreach utilizing a community-based participatory approach (CBPA), which involves all stakeholders in the planning and implementation of the science outreach based on the interests of teachers/students and scientists. E-matching is a timely and urgent endeavor that provides a rapid connection for science engagement between teachers/students and experts in an effort to fill the science outreach gap. National Lab Network (formerly National Lab Day), an ongoing initiative to increase science equity and literacy, provides a model for engaging the public in science via an E-matching and hands-on learning approach. We argue that science outreach should be a dynamic endeavor that changes according to the needs of a target school. We will describe a case study of a tailored science outreach activity in which a public school that serves mostly under-represented minority students from disadvantaged backgrounds were E-matched with a university, and subsequently became equal partners in the development of the science outreach plan. In addition, we will show how global science outreach endeavors may utilize a CBPA, like E-matching, to support a pipeline to science among under-represented minority students and students from disadvantaged backgrounds. By merging the CBPA concept with a practical case example, we hope to inform science outreach practices via the lens of a tailored E-matching approach.     

Use of macroecology to integrate social justice and conservation

Both conservation biology and macroecology are synthetic, and macroecological research consistently has informed the theory and practice of biological conservation. Explicit integration of the macroecology of human systems and natural systems has been rare, but can advance the incorporation of social justice, environmental justice and environmental equity into conservation biology and participatory conservation (inclusion in decision‐making of those who are affected by, or can affect, that decision). The basis of this strong link is the focus of macroecology on the relations of a given biota to environmental patterns and processes, and these patterns and processes can affect humans differentially. Macroecological integration of social justice and conservation generally requires spatial and temporal representation of all variables at resolutions and extents that allow meaningful analyses. This requirement may facilitate clarity about social metrics and norms. To illustrate, we examine applications of macroecology to analysis of the effects of climate change on social justice and biological conservation; relations among climate, violence among humans and conservation; and the response of the spread of disease to social and ecological factors. We believe that macroecology is a means of providing transparent inferences that can inform conservation, health and social policies.     

Community engagement in global health research that advances health equity

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community members in global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs.     

Protecting subjects' interests in genetics research

Biomedical researchers often assume that sponsors, subjects, families, and disease-associated advocacy groups contribute to research solely because of altruism. This view fails to capture the diverse interests of many participants in the emerging research enterprise. In the past two decades, patient groups have become increasingly active in the promotion and facilitation of genetics research. Simultaneously, a significant shift of academic biomedical science toward commercialization has occurred, spurred by U.S. federal policy changes. The concurrent rise in both the roles that subjects play and the commercial interests they have presents numerous ethical challenges. We examine the interests of different research participants, finding that these interests are not addressed by current policies and practices. We conclude that all participants should be given a voice in decisions affecting ownership, access to, and use of commercialized products and services, and that researchers and institutions should negotiate issues relating to control of research results and the sharing of benefits before the research is performed.     

Science and policy: valuing framing, language and listening

This paper considers the context for science contributing to policy development and explores some critical issues that should inform science advocacy and influence with policy makers. The paper argues that the key challenges are at least as much in educating conservation scientists and science communicators about society and policy making as they are in educating society and policy makers about science. The importance of developing processes to ensure that scientists and science communicators invest in the development of relationships based on respect and understanding of their audience in both communities and amongst policy makers provides a critical first step. The objectives of the Global Strategy for Plant Conservation acknowledge the importance of developing the capacities and public engagement necessary to implement the Strategy, including knowledge transfer and community capacity building. However, the development of targets to equip institutions and plant conservation professionals to explicitly address the barriers to influencing policy development through knowledge transfer and integration require further consideration.