Genomic Research and Data-Mining Technology: Implications for Personal Privacy and Informed Consent

This essay examines issues involving personal privacy and informed consent that arise at the intersection of information and communication technology (ICT) and population genomics research. I begin by briefly examining the ethical, legal, and social implications (ELSI) program requirements that were established to guide researchers working on the Human Genome Project (HGP). Next I consider a case illustration involving deCODE Genetics, a privately owned genetic company in Iceland, which raises some ethical concerns that are not clearly addressed in the current ELSI guidelines. The deCODE case also illustrates some ways in which an ICT technique known as data mining has both aided and posed special challenges for researchers working in the field of population genomics. On the one hand, data-mining tools have greatly assisted researchers in mapping the human genome and in identifying certain "disease genes" common in specific populations (which, in turn, has accelerated the process of finding cures for diseases tha affect those populations). On the other hand, this technology has significantly threatened the privacy of research subjects participating in population genomics studies, who may, unwittingly, contribute to the construction of new groups (based on arbitrary and non-obvious patterns and statistical correlations) that put those subjects at risk for discrimination and stigmatization. In the final section of this paper I examine some ways in which the use of data mining in the context of population genomics research poses a critical challenge for the principle of informed consent, which traditionally has played a central role in protecting the privacy interests of research subjects participating in epidemiological studies.     

Does the scholarly communication system satisfy the beliefs and aspirations of new researchers? Summarizing the Harbingers research

A study from the Harbingers research project provides a comprehensive assessment of the main features of the scholarly communications system as viewed by early career researchers (ECRs) in the final year of the study (2018). Aspects covered are: discovery and access, authorship practices, peer review, publishing strategies, open access publishing, open data, sharing, collaboration, social media, metrics, impact, reputation, libraries, publishers, and scholarly transformations. Nearly 120 science and social science researchers from seven countries were questioned about these 16 aspects. It was found that some scholarly features work well for ECRs, and in this category can be included: discovery and access, authorship practices, sharing, collaboration, and publishers. Reputation, publishing strategies, and impact are more problematical, and they, in turn, cause tensions regarding some other factors – social media, open access, and open data. Of the rest, libraries are largely invisible, and ECRs have conflicting views concerning ethical behaviour. Few envisage that transformational change will take place in the next 5 years.     

Early career researchers and their authorship and peer review beliefs and practices: An international study

This article reports on the findings of an international online survey of early career researchers (ECRs) with regard to their authorship and peer review, attitudes, and practices, which sought to discover how the new wave of researchers were utilizing these key aspects of the scholarly communications system. A questionnaire was developed on the back of a 3‐year longitudinal, qualitative study and was distributed through publisher lists, social media networks, university networks, and specialist ECR membership organizations. Identical English, Polish, Russian, Chinese, Spanish, and French versions of the questionnaire were used. Results from 1,600 respondents demonstrated that 82.7% had co‐authored a paper, and most had performed a variety of authorship tasks. Almost half the respondents reported being subject to various authorship policies, although a quarter said they were not aware of any such policies. Almost all Chinese ECRs reported being subject to authorship policies, but only a third of UK ECRs reported the same. Three‐quarters of ECRs had experience in responding to peer review, and half had been peer reviewers. Half the respondents had a good experience of review and viewed it as a valuable way to improve their authorship skills. However, there was some criticism of some shortcoming such as lengthy peer review and superficial or uninformed comments by reviewers. Double‐blind review was the preferred methodology, and there were few suggestions for how to improve the review process.     

Auditory delayed discriminations by the dolphin: Nonequivalence with delayed-matching performance

Working memory in a bottlenosed dolphin was tested in both indirect and direct auditory delayed-discrimination tasks in which a correct spatial response was conditional upon the nature of a preceding sound. In the indirect task, either one of two possible sounds was briefly presented. After a prescribed delay, the dolphin was cued to go either to a left-hand or right-hand paddle pair. Responses to the outer paddle of a pair were rewarded following sound A, and responses to the inner paddle of a pair were rewarded after sound B. In the direct delayed-discrimination task, only one paddle pair was used in each session. In both tasks, the delay interval between the discriminative sound stimulus and the opportunity for a spatial response was progressively increased over sessions until the animal failed to meet a specified performance criterion or self-terminated a session. Delay limits of about 30 and 60 sec were obtained in the indirect and direct tasks, respectively. The increase in delay limit in the latter task was attributable to the use of an overt mediational response during the longer delays. In both cases, however, the obtained delay limits fell considerably short of the 2- to 3-min limits obtained in auditory delayed-matching studies using the same test sounds and the same subject. The task differences indicate that working memory functions cannot depend upon memory of the predelay stimulus alone, but must be determined in part by additional processes.     

Forging harmony in the social organism: industry and the power of psychometric techniques

This article analyses the initiating role of the steel industry in educational selection by means of psychometric techniques used in the psycho-physiological laboratory associated with a vocational school in Luxembourg founded in 1914. It first considers the origins of, and initial meanings bestowed upon, this first (and perhaps also last) Luxembourg Laboratory of Psychophysiology. Second, it investigates whether and, if so, to what extent psychometric techniques developed in this laboratory for vocational orientation were used strategically to foster an ethic of individual harmony by means of objectified observation and categorisation of the aptitude. What hidden agendas underpinned the industry’s rhetoric regarding the rebirth of the individual and the empowerment of personal vocation through science-oriented processes like quantification, measurement and rational assessment? Did such rhetoric legitimise the industry’s self-image as a privileged force in structuring the social fabric as well as individual lives?     

Why do adults learn? Developing a motivational typology across 12 European countries

Participation in adult education is today generally considered an individual responsibility. However, participation is the result of a complex bounded agency between individuals, educational institutions and regulating governments. This paper explores the motives of 12,000 European adult learners in formal adult education in 12 European countries. Analysis shows consistent patterns comparable to welfare state typologies. Further exploration demonstrates that motives to participate in adult education courses can be interpreted in relation to the labour market, education and social policy in the country of participation.     

Collaborative research in contexts of inequality: the role of social reflexivity

This article reports on the role and value of social reflexivity in collaborative research in contexts of extreme inequality. Social reflexivity mediates the enablements and constraints generated by the internal and external contextual conditions impinging on the research collaboration. It fosters the ability of participants in a collaborative project to align their interests and collectively extend their agency towards a common purpose. It influences the productivity and quality of learning outcomes of the research collaboration. The article is written by fourteen members of a larger research team, which comprised 18 individuals working within the academic development environment in eight South African universities. The overarching research project investigated the participation of academics in professional development activities, and how contextual, i.e. structural and cultural, and agential conditions, influence this participation. For this sub-study on the experience of the collaboration by fourteen of the researchers, we wrote reflective pieces on our own experience of participating in the project towards the end of the third year of its duration. We discuss the structural and cultural conditions external to and internal to the project, and how the social reflexivity of the participants mediated these conditions. We conclude with the observation that policy injunctions and support from funding agencies for collaborative research, as well as support from participants’ home institutions are necessary for the flourishing of collaborative research, but that the commitment by individual participants to participate, learn and share, is also necessary.     

So,are early career researchers the harbingers of change?

This article provides the final results of a 3‐year study that sought to discover whether early career researchers (ECRs) were the harbingers of change with respect to scholarly communications. Over a hundred science and social science ECRs from seven countries, spanning three continents, were depth‐interviewed annually for 3 years (2016–2018) about their attitudes and behaviours with respect to 23 scholarly issues and activities (aspects). In order to provide an accessible overarching assessment of an extremely large and complex dataset, the interview data were categorized according to the strength and direction of change exhibited and the trends and points of interest raised. Results show that all ECRs have changed in one way or another, and a small minority has changed greatly in both attitude and practice and that collaboration and research impact are the scholarly aspects where most changes have occurred, and the greatest cause of change is not so much new technology as a change of jobs.     

Recent Publications in Natural History

Principal Review: Edwards, Stephen R., Bruce M. Bell, and Mary Elizabeth King , comps. Pest control in museums: a status report (1980). Principal Review: Dubos, René . The Wooing of Earth: new perspectives on man's use of nature.