Sharing the Knowledge: Sharing Aggregate Genomic Findings with Research Participants in Developing Countries

Returning research results to participants is recognised as an obligation that researchers should always try to fulfil. But can we ascribe the same obligation to researchers who conduct genomics research producing only aggregated findings? And what about genomics research conducted in developing countries? This paper considers Beskow's et al. argument that aggregated findings should also be returned to research participants. This recommendation is examined in the context of genomics research conducted in developing countries. The risks and benefits of attempting such an exercise are identified, and suggestions on ways to avoid some of the challenges are proposed. I argue that disseminating the findings of genomic research to participating communities should be seen as sharing knowledge rather than returning results. Calling the dissemination of aggregate, population level information returning results can be confusing and misleading as participants might expect to receive individual level information. Talking about sharing knowledge is a more appropriate way of expressing and communicating the outcome of population genomic research. Considering the knowledge produced by genomics research a worthwhile output that should be shared with the participants and approaching the exercise as a ‘sharing of knowledge’, could help mitigate the risks of unrealistic expectations and misunderstanding of findings, whilst promoting trusting and long lasting relationships with the participating communities.     

The 13th International Workshops on Opportunistic Protists (IWOP13)

The 13th International Workshops on Opportunistic Protists (IWOP‐13) was held November 13–15, 2014 in Seville, Spain. The objectives of the IWOP meetings are to: (1) serve as a forum for exchange of new information among active researchers concerning the basic biology, molecular genetics, immunology, biochemistry, pathogenesis, drug development, therapy, and epidemiology of these immunodeficiency‐associated pathogenic eukaryotic microorganisms that are seen in patients with AIDS and; (2) to foster the entry of new and young investigators into these underserved research areas. The IWOP meeting focuses on opportunistic protists; e.g. the free‐living amoebae, Pneumocystis, Cryptosporidium, Toxoplasma, the Microsporidia, and kinetoplastid flagellates. This conference represents the major conference which brings together research groups working on these opportunistic pathogens. Progress has been achieved on understanding the biology of these pathogenic organisms, their involvement in disease causation in both immune deficient and immune competent hosts and is providing important insights into these emerging and reemerging pathogens. A continuing concern of the participants is the ongoing loss of scientific expertise and diversity in this research community. This decline is due to the small size of these research communities and an ongoing lack of understanding by the broader scientific community of the challenges and limitations faced by researchers working on these organisms, which makes these research communities very sensitive to declines in research funding.     

Collaborative research and intellectual property rights

Scientists find themselves working more and more with indigenous, traditional and local communities in all aspects of their collections and investigations. Indigenous knowledge has become increasingly important in research while at the same time local communities have become increasingly politicized in the use, misappropriation, and commercialisation of their knowledge and biogenetic resources. It is becoming more and more difficult for even the most well-intentioned scientists to stride into indigenous areas and collect plants, animals, folk tales, and photos without having first to convince local leaders that the scholarly efforts will somehow benefit the communities — that the benefits of research results will directly and indirectly lead to strengthening the traditional society. In many parts of the world, indigenous peoples only allow Collaborative Research in which the scientific priorities and agendas are controlled by the communities, or Community Controlled Research in which the communities actually contract scientists to carry out the group's research plan. Control over data has become one of the key battle cries for the indigenous movement, that is now demanding Intellectual Property Rights over information obtained through research and just compensation for economic benefits that eventually may accrue. This paper deals with some of the ethical and practical issues that frame this rapidly evolving debate.     

Discourses,Power Negotiations and Indigenous Political Organization in Forest Partnerships: The Case of Selva de Matavén,Colombia

While much research on forest partnerships hitherto has been focused mainly on the drivers behind their formation, the kind of actors and deals involved, and the factors that promote or hinder their success, much less attention has been paid to the dynamic relationships and processes inherent in these partnerships. Based on the study of a partnership process in an indigenous reservation in Colombian Amazonia covering a variety of projects, this paper seeks to fill part of this lacuna by analyzing the partnership as a dynamic ‘discursive battlefield,’ in which objectives and actions are being constantly negotiated. Actors in the Matavén partnership strategically incorporate discursive elements in order to pursue their own interests while also endorsing those that ensure the continuation of collaboration. We conclude that discourses are embedded in partnership micro-politics. On the one hand, discursive shifts occur as a reflection of power balances at given moments. On the other hand, discourses constitute indispensable resources with the potential to both enhance individual actor’s negotiating power and to create opportunities for compromise. Within an ongoing discursive tension between ‘conservation’ and ‘indigenous autonomy,’ flexible notions such as ‘territorial ordering’ prove to be successful in allowing space for manoeuvre and granting conceptual coherence to shifts occurring ‘on the ground.’     

The past,present and future of genomics and bioinformatics: A survey of Brazilian scientists

Brazil has one of the highest rates of scientific production, occupying the ninth position among countries with genome-sequencing projects. Considering the rapid development of this research area and the diversity of professionals involved, the present study aims to understand the expectations, past experiences and the current scenario of Brazilian research in bioinformatics and genomics. The present research was carried out by analyzing the perceptions of 576 researchers in genomics and bioinformatics in Brazil through content and sentiment analysis techniques. This group of participants is equivalent to 48% of the members of the research community. The results suggest that most researchers have a positive perception of the potential of this research area. However, there is concern about the lack of funding for investing in equipment and professional training. As part of a wish list for the future, researchers highlighted the need for higher funding, formal education, and collaboration among research networks. When asked about genomics and bioinformatics in other countries, the participants recognize that sequencing technologies and infrastructure are more accessible, allowing better data volume expansion.     

Guidelines for Community-based Ethics Review of Children’s Science Fair Projects

Low-level community based ethics committees staffed by teachers, parents and community representatives can readily review children’s science fair projects subject to the revision of two core assumptions currently governing children’s Science Fairs. The first part of the paper recasts the New Zealand Royal Society guidelines from its primary emphasis on risk to a new assumption, without benefit there can be no risk. Equally, this revision gives more prominence to the participant information sheet, allowing it to act as a quasi application form which provides ethical transparency between student researchers, participants and a community based ethics committee. A second core assumption, more accurately labeled a cult of originality, produces a random, open-ended array of student topics taking ethics review beyond the confidence level of most community based ethics review committees. This paper reins in Science Fair coordinators recommending they make community level ethics review more manageable by providing a list of preapproved topics for those students wanting to conduct research involving human participants. These revised assumptions create a workable division of labour. Teachers’ preapproved topics involving human participants are more likely to be low risk, permitting community level ethics review to focus primarily on two aspects of the minimization of harm: first, for all participants, especially those with diminished autonomy, and second, for the child researchers themselves, as some participants may be unknown to the student. These revised assumptions make science and ethics more accessible to public education thus demonstrating how Science Fairs can lead students and the community into better understanding the role and function that ethics has in all scientific research human participants. Martin Tolich chaired New Zealand’s National Health Ethics committee, the multi-region ethics committee.     

From Virus Research to Molecular Biology: Tobacco Mosaic Virus in Germany, 1936-1956

In 1937, a group of researchers in Nazi Germany began investigating tobacco mosaic virus (TMV) with the hope of using the virus as a model system for understanding gene behavior in higher organisms. They soon developed a creative and interdisciplinary work style and were able to continue their research in the postwar era, when they made significant contributions to the history of molecular biology. This group is significant for two major reasons. First, it provides an example of how researchers were able to produce excellent scientific research in the midst of dictatorship and war.Coupled with the group's ongoing success in postwar Germany, the German TMV investigators provide a dramatic example of how scientific communities deal with adversity as well as rapid political and social change. Second, since the researchers focused heavily (though no exclusively) on TMV, their story allows us to analyze how an experimental system other than phage contributed to the emergence of molecular biology.     

The Biodiversity Discourse: Categorisation of Indigenous People in a Mexican Bio-prospecting Case

Indigenous knowledge is often portrayed as static and traditional, while indigenous people are considered victims of exploitation. In the name of development and empowerment NGOs as well as scientists may run the risk of representing indigenous communities that fit their definition of the “correct” way to be indigenous. However, for indigenous people knowledge is not necessarily a static condition in a binary position to science or the ‘modern’ world. Rather, it is a dynamic condition that draws from experience and adapts to a changing environment. The perspective advanced in this paper is that all forms of knowledge, including indigenous knowledge(s), are situated and hybrid. Our argument draws from research carried out in Chiapas, Mexico, regarding the ICBG-Maya bio-prospecting project that was initiated in the 1990s and later terminated due to accusations of bio-piracy.     

The potential influence of Internet-based social networking on the conduct of clinical research studies

The rapid growth of internet usage has led to an explosion of social networking sites for discussion of health issues. This provides a forum for subjects to communicate with one another during the course of the studies. Previous studies have raised concerns about the quality of health information on social networking sites, although none have evaluated content related to ongoing clinical trials. We reviewed material posted in virtual communities by self-identified clinical trial participants. We identified material posted in online health forums that could introduce bias into clinical research studies; we believe that this issue warrants further study and discussion. Physicians and others who conduct clinical trials should be aware of this issue. Study investigators and research teams should also talk to their study subjects about where and how they are obtaining information in order to prevent behaviors and correct misinformation that could put a subject's safety or the study objectives at risk. Given the rapid increase in Internet use for health care, a broader evaluation of both the benefits and potential risks of social networking among research participants during the course of a clinical trial appears warranted.     

The 12th International Workshops on Opportunistic Protists (IWOP‐12)

The 12th International Workshops on Opportunistic Protists (IWOP‐12) was held in August 2012 in Tarrytown, New York. The objectives of the IWOP meetings are to: (1) serve as a forum for exchange of new information among active researchers concerning the basic biology, molecular genetics, immunology, biochemistry, pathogenesis, drug development, therapy, and epidemiology of these immunodeficiency‐associated pathogenic eukaryotic microorganisms that are seen in patients with AIDS and (2) foster the entry of new and young investigators into these underserved research areas. The IWOP meeting focuses on opportunistic protists, e.g. the free‐living amoebae, Pneumocystis, Cryptosporidium, Toxoplasma, the Microsporidia, and kinetoplastid flagellates. This conference represents the major conference that brings together research groups working on these opportunistic pathogens. Slow but steady progress is being achieved on understanding the biology of these pathogenic organisms, their involvement in disease causation in both immune‐deficient and immune‐competent hosts, and is providing critical insights into these emerging and reemerging pathogens. This IWOP meeting demonstrated the importance of newly developed genomic level information for many of these pathogens and how analysis of such large data sets is providing key insights into the basic biology of these organisms. A great concern is the loss of scientific expertise and diversity in the research community due to the ongoing decline in research funding. This loss of researchers is due to the small size of many of these research communities and a lack of appreciation by the larger scientific community concerning the state of art and challenges faced by researchers working on these organisms.     

Population biobanks and returning individual research results: mission impossible or new directions?

Historically, large-scale longitudinal genomic research studies have not returned individual research results to their participants, as these studies are not intended to find clinically significant information for individuals, but to produce ‘generalisable’ knowledge for future research. However, this stance is now changing. Commentators now argue that there is an ethical imperative to return clinically significant results and individuals are now expressing a desire to have them. This shift reflects societal changes, such as the rise of social networking and an increased desire to participate in medical decision-making, as well as a greater awareness of genetic information and the increasing ability of clinicians to use this information in health care treatment. This paper will discuss the changes that have prompted genomic research studies to reconsider their position and presents examples of projects that are actively engaged in returning individual research results.     

Current estate of biotechnology in Costa Rica

A study was carried out on the construction of indicators in biotechnology in Costa Rica as part of the project "SYMBIOSIS, Cooperative Program for the Construction of Indicators in Biotechnology adapted to Latin American and Caribbean countries, to motivate the application and transference of industrial technologies". The study focused on two units: researchers and research projects developed in Costa Rica, between 1998 and 2002. For researchers, information was collected about indicators related to sex, age, teaching activities, number of projects, academic degree, area of speciality and number of publications. For research projects we obtained information about: speciality, sector of application, duration of projects and number of researchers per project. Very interesting results include the high participation of the women in this area of investigation (54%); the low participation of young researchers (13% younger than 30), and a high proportion of the investigators that are responsible for 4 or more projects (42%). With relation to the specialities of the projects, the majority are in the category Bio-Agro (39%) whereas in Acuaculture only 1% was found. The sectors of application with the most number of projects are: Agriculture and Livestock (37%) and Human Health (35%). The main strengthts and limitatations for the development of biotechnology in Costa Rica are discussed.     

When they hear what we say: ethical challenges in presenting research findings to the Huntington disease community

Sharing findings with the Huntington disease (HD) community and other genetic disease communities is challenging because of the sensitivity involved in effectively communicating findings to participants. We describe our experiences of presenting multi-disciplinary research findings to the HD community, and discuss the need to: (1) balance potential benefits and harms for participants, researchers, and others; (2) demonstrate respect for participants' needs, expectations, and priorities; and (3) ensure transparency and respect for autonomy.     

Realizing the promise of population biobanks: a new model for translation

The promise of science lies in expectations of its benefits to societies and is matched by expectations of the realisation of the significant public investment in that science. In this paper, we undertake a methodological analysis of the science of biobanking and a sociological analysis of translational research in relation to biobanking. Part of global and local endeavours to translate raw biomedical evidence into practice, biobanks aim to provide a platform for generating new scientific knowledge to inform development of new policies, systems and interventions to enhance the public’s health. Effectively translating scientific knowledge into routine practice, however, involves more than good science. Although biobanks undoubtedly provide a fundamental resource for both clinical and public health practice, their potentiating ontology—that their outputs are perpetually a promise of scientific knowledge generation—renders translation rather less straightforward than drug discovery and treatment implementation. Biobanking science, therefore, provides a perfect counterpoint against which to test the bounds of translational research. We argue that translational research is a contextual and cumulative process: one that is necessarily dynamic and interactive and involves multiple actors. We propose a new multidimensional model of translational research which enables us to imagine a new paradigm: one that takes us from bench to bedside to backyard and beyond, that is, attentive to the social and political context of translational science, and is cognisant of all the players in that process be they researchers, health professionals, policy makers, industry representatives, members of the public or research participants, amongst others.     

Whakapapa – A Foundation for Genetic Research?

Whakapapa is the foundation of traditional Māori social structure and it perpetuates a value base that locates people through their relationships to the physical and spiritual worlds. As part of a new envirogenomics research programme, researchers at the Institute of Environmental Science and Research (ESR) are developing a study with an iwi (tribe) to identify combinations of genetic and environmental factors that may contribute to current health status. A major objective of this study is to utilise whakapapa (genealogical information) to explore patterns of genetic variation unique to the iwi and to correlate these with potential disease or ill health. Genetic testing and screening raises numerous ethical issues, particularly when indigenous peoples are the subjects. This paper will outline ESR’s strategy for addressing indigenous concerns about genetic testing and how whakapapa forms an integral part of the envirogenomics research programme.     

From Assessment to Policy: Lessons Learned from the U.S. National Assessment

The process of translating scientific information into timely and useful insights that inform policy and resource management decisions, despite the existence of uncertainties, is a difficult and challenging task. Policy-focused assessment is one approach to achieving this end. It is an ongoing process that engages both researchers and end-users to analyze, evaluate and interpret information from multiple disciplines to draw conclusions that are timely and useful for decision makers. This paper discusses key characteristics of a policy-focused assessment process, including (1) ongoing collaboration between the research, assessment, and stakeholder communities; (2) a focus on stakeholder information needs; (3) multidisciplinary approaches; (4) use of scenarios to deal with uncertainties; and (5) evaluation of risk management options. We illustrate the particular challenge to assessors of providing the specific types of insights stakeholders need to effectively influence policy decisions. And we discuss the role that assessment can play in formulating an agenda for future research. Examples from the U.S. National Assessment of “The Potential Consequences of Climate Variability and Change for the United States” are used to illustrate a policy-focused assessment process. For many of the participants, the first U.S. National Assessment was an extraordinary learning experience about how to develop better ways of conducting assessments.     

Public Response to Official Information on Cancer and Cancer Clusters

Official information about cancer and cancer clusters from state health departments clashes with lay views. A few studies have covered site-specific communication by telephone and public meetings, and hypothetical messages, but not generic information actually provided. Public response to such information was probed with a random survey of New Jersey households (n = 327), part of a quasi-experiment contrasting the agency's cognitive message and an alternative message adding procedural and affective information. Respondents rated both information types as understandable, helpful, and trustworthy, particularly among those trusting the agency, agreeing with officials’ views of facts, and with low concern about local clusters. Anxiety about cancer, aversion to uncertainty, cancer experience, and familiarity with clusters or the agency did not affect responses. Agreeing with officially defined facts (knowledge) was associated with trust in the agency and concern about clusters, but scepticism about expert knowledge. Information exposure increased trust, belief in expert knowledge (except on whether cancers cluster), and (some) factual knowledge, but also increased self-reported concern among those already concerned. These findings suggest that, absent specific learning, people believe scientific information is understandable, helpful, and trustworthy when they already trust experts and institutions; people with prior distrust offer less positive evaluations.     

Recent research on Arctic benthos: common notions need to be revised

Increased public awareness of the global significance of polar regions and opening of the Russian Arctic to foreign researchers have led to a pronounced intensification of benthic research in Arctic seas. The wealth of information gathered in these efforts has markedly enhanced our knowledge on the Arctic benthos. While some scientific concepts have been corroborated by the novel findings (e.g., low endemism and high faunistic affinity to northern Atlantic assemblages), other common notions need to be revised, particularly with regard to the often-cited differences between Arctic seas and the Southern Ocean. It has been demonstrated that benthos assemblages vary broadly in diversity between Arctic regions and that, hence, the idea of a consistently poor Arctic benthos—being in stark contrast to the rich Antarctic bottom fauna—is an undue overgeneralization. In terms of biogeographic diversity, both Arctic and Antarctic waters seem to be characterized by intermediate species richness. Levels of disturbance—a major ecological agent known to heavily affect benthic diversity and community structure—have been assumed to be relatively high in the Arctic but exceptionally low in the Southern Ocean. The discovery of the great role of iceberg scouring in Antarctic shelf ecosystems, which has largely been overlooked in the past, calls for a reconsideration of this notion. The novel data clearly demonstrate that there are marked differences in geographical and environmental setting, impact of fluvial run-off, pelagic production regime, strength of pelago–benthic coupling and, hence, food supply to the benthos among the various Arctic seas, impeding the large-scale generalization of local and regional findings. Field evidence points to the great significance of meso-scale features in hydrography and ice cover (marginal ice zones, polynyas, and gyres) as ‘hot spots’ of tight pelago–benthic coupling and, hence, high benthic biomass. In contrast, the importance of terrigenic organic matter discharged to the Arctic seas through fluvial run-off as an additional food source for the benthos is still under debate. Studies on the partitioning of energy flow through benthic communities strongly suggest that megafauna has to be adequately considered in overall benthic energy budgets and models of carbon cycling, particularly in Arctic shelf systems dominated by abundant echinoderm populations. Much progress has been made in the scientific exploration of the deep ice-covered Arctic Ocean. There is now evidence that it is one order of magnitude more productive than previously thought. Therefore, the significance of shelf–basin interactions, i.e., the importance of excess organic carbon exported from productive shelves to the deep ocean, is still debated and, hence, a major topic of on-going research. Another high-priority theme of current/future projects are the ecological consequences of the rapid warming in the Arctic. Higher water temperatures, increased fluvial run-off and reduced ice cover will give rise to severe ecosystem changes, propagating through all trophic levels. It is hypothesized that there would be a shift in the relative importance of marine biota in the overall carbon and energy flux, ultimately resulting in a switch from a ‘sea-ice algae–benthos’ to a ‘phytoplankton–zooplankton’ dominance.