The extent of consensus (or the lack thereof) among experts in emerging fields of innovation can serve as antecedents of scientific, societal, investor and stakeholder synergy or conflict. Naturally, how we measure consensus is of great importance to science and technology strategic foresight. The Delphi methodology is a widely used anonymous survey technique to evaluate consensus among a panel of experts. Surprisingly, there is little guidance on how indices of consensus can be influenced by parameters of the Delphi survey itself. We simulated a classic three-round Delphi survey building on the concept of clustered consensus/dissensus. We evaluated three study characteristics that are pertinent for design of Delphi foresight research: (1) the number of survey questions, (2) the sample size, and (3) the extent to which experts conform to group opinion (the Group Conformity Index) in a Delphi study. Their impacts on the following nine Delphi consensus indices were then examined in 1000 simulations: Clustered Mode, Clustered Pairwise Agreement, Conger’s Kappa, De Moivre index, Extremities Version of the Clustered Pairwise Agreement, Fleiss’ Kappa, Mode, the Interquartile Range and Pairwise Agreement. The dependency of a consensus index on the Delphi survey characteristics was expressed from 0.000 (no dependency) to 1.000 (full dependency). The number of questions (range: 6 to 40) in a survey did not have a notable impact whereby the dependency values remained below 0.030. The variation in sample size (range: 6 to 50) displayed the top three impacts for the Interquartile Range, the Clustered Mode and the Mode (dependency = 0.396, 0.130, 0.116, respectively). The Group Conformity Index, a construct akin to measuring stubbornness/flexibility of experts’ opinions, greatly impacted all nine Delphi consensus indices (dependency = 0.200 to 0.504), except the Extremity CPWA and the Interquartile Range that were impacted only beyond the first decimal point (dependency = 0.087 and 0.083, respectively). Scholars in technology design, foresight research and future(s) studies might consider these new findings in strategic planning of Delphi studies, for example, in rational choice of consensus indices and sample size, or accounting for confounding factors such as experts’ variable degrees of conformity (stubbornness/flexibility) in modifying their opinions.

ContextBiobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants’ information is managed and shared. Three previous studies of the Canadian public’s opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public.ResultsOver half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers. Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions. Whereas more respondents indicated a preference for one-time general consent than any other model of consent, they constituted less than half of the total responses, revealing a lack of consensus among survey respondents regarding this question. Respondents identified biobank objectives, governance structure and accountability as the most important information to provide participants. Respondents’ concerns about biobanking generally centred around the control and ownership of biological samples and data, especially with respect to potential misuse by insurers, the government and other third parties. Although almost half the respondents suggested that these should be managed by the researchers’ institutions, results indicate that the public is interested in being well-informed about these projects and suggest the importance of increased involvement from participants. In conclusion, the study discusses the viability of several proposed models for informed consent, including e-governance, independent trustees and the use of exclusion clauses, in the context of these new findings about the views of the Canadian public.

BackgroundCanadian policies regarding the implementation and public coverage of non-invasive prenatal testing (NIPT) are heterogeneous and shifting, with NIPT being publicly covered for high-risk pregnancies in some provinces, but not others. Such a diverse and evolving policy landscape provides fertile ground for examining the preferences of pregnant women, their partners, and health professionals regarding the implementation and coverage of NIPT by the public healthcare system, as well as the factors influencing their preferences, which is what the present study does.MethodsIn this paper, we report the results of three-large scale Canadian surveys, in which 882 pregnant women, 395 partners of pregnant women, and 184 healthcare professionals participated.ResultsThe paper focuses on preferences regarding how and when NIPT should be used, as well as the factors influencing these preferences, and how coverage for NIPT should be provided. These are correlated with respondents’ levels of knowledge about Down syndrome and testing technologies and with their stated intended use of NIPT results.ConclusionSalient is the marked difference between the preferences of prospective parents and those of healthcare professionals, which has potential implications for Canadian policy regarding NIPT implementation and insurance coverage.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-2153-y) contains supplementary material, which is available to authorized users.

BackgroundIncreasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER.MethodsA three-round Delphi survey was conducted with a panel of early-career researchers (ECRs) involved in PER. One of the objectives was to examine the ethical dimensions of PER as well as ECRs’ self-perceived level of preparedness to conduct PER ethically. The study was conducted among awardees of the Québec SPOR-SUPPORT Unit in Canada, who represent the next generation of researchers involved in PER. Many themes were addressed throughout the study, such as definition, values, patients’ roles, expected characteristics of patients, and anticipated challenges (including ethical issues). Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales.ResultsBetween April and November 2016, 25 ECRs were invited to participate; 18 completed both the first and second rounds, and 16 completed the third round. Panelists consisted of nine women and seven men with various backgrounds (general practitioners and postgraduate students). The majority were between 25 and 44 years old. Panelists’ responses showed PER raises important ethical issues: 1) professionalization of patients involved in research (with risks of patients becoming less representative); 2) adequate remuneration of patients; 3) fair recognition of patients’ experiential knowledge; and 4) tokenism (engaging patients only for symbolic appeal). While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project.ConclusionIf PER is an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Despite their overall readiness to conduct PER, panelists did not feel adequately prepared to address many of these issues. It is not easy for ECRs to reconcile ethical desiderata and logistical imperatives. Additional research should focus on supporting the responsible conduct of PER, which, if not done, can undermine the credibility and feasibility of the entire PER enterprise.

Objective: This study sought to assess Canadian pregnant women's and their partners' preferences for information about non-invasive prenatal testing (NIPT). Methods: Pregnant women and their partners across Canada were surveyed as part of the Personalized Genomics for prenatal Aneuploidy Screening Using maternal blood (PEGASUS) study. Results: A total of 882 pregnant women and 395 partners participated. Women preferred being informed by a physician (77.2%). They preferred getting information ahead of time, except for information about resources for families with Down syndrome, which they preferred getting with test results. More than half thought that written consent is important (63.7%) and could decide whether to do NIPT on the day they received the information (54.9%). Women preferred to be informed of results by telephone (43.7%) or in person (28%), but they preferred in person if they were considered at high risk for Down syndrome on the basis of the results (76%). The partner was the person whose input was considered most important (62.6%). Partners' preferences were similar, except that partners tended to want information later (at the time of the test or with the results) and felt that their opinion was not considered as highly by health professionals. Conclusion: Canadian women want information about NIPT early, in person, by a knowledgeable physician. Partners also want to be informed and involved in the decision-making process. Résumé Objectif : Cette étude visait à déterminer les préférences des femmes enceintes et de leur partenaire quant à la communication de renseignements relatifs au test prénatal non effractif (TPNE). Méthodologie : Des femmes enceintes et leurs partenaires canadiens ont été sondés dans le cadre de l'étude PEGASUS (Génomique personnalisée pour le dépistage prénatal de l'aneuploïdie à l'aide du sang maternel). Résultats : Au total, 882 femmes enceintes et 395 partenaires ont répondu au sondage. Selon ce dernier, les femmes préfèrent que les renseignements viennent d'un médecin (77,2 %), et préfèrent les recevoir à l'avance, sauf ceux sur les ressources destinées aux familles touchées par le syndrome de Down, qu'elles aiment mieux obtenir avec les résultats du test. Plus de la moitié des répondantes estiment que l'obtention d'un consentement écrit est importante (63,7 %) ou être en mesure de prendre une décision relative au TPNE le jour même où elles reçoivent les renseignements (54,9 %). Les femmes aiment également mieux recevoir les résultats du test par téléphone (43,7 %) ou en personne (28 %), mais préfèrent les recevoir en personne s'ils font état d'un risque élevé de syndrome

Patient-oriented research (POR) has received increasing attention in recent years. In this approach, patients' experiential knowledge, derived from their experiences of living with a condition or illness and of interacting with the healthcare system, is recognized, valued, and seen as complementary to scientific knowledge. Early career researchers (ECRs) are the next generation of researchers, but little is known about how they perceive POR. In this study, ECRs were invited to reflect on what POR is, how patients can best contribute to research, and ECRs' own role in developing POR. Using a technique designed to collect expert opinions and find consensus-the Delphi method-a panel of 16 ECRs responded, in three rounds, to three questionnaires, with the second and third being built on responses to the preceding ones. Based on their understanding, the panelists agreed that the most important element in defining POR would be valuing, mobilizing, and legitimizing the experiential knowledge of patients who live with a particular health condition. Panelists considered patients to be integral members of the research team, but were less convinced that they should be considered co-researchers. The panelists saw themselves as taking part in developing POR by sharing information, teaching, and encouraging POR among their peers, as well as by participating actively in organizations interested in POR. This is the first study to examine the perspectives of ECRs, who, along with many others, have an important role in supporting the ongoing development of POR so that it becomes more widely adopted.

Access to clean water is a grand challenge in the 21st century. Water safety testing for pathogens currently depends on surrogate measures such as fecal indicator bacteria (e.g., E. coli). Metagenomics concerns high-throughput, culture-independent, unbiased shotgun sequencing of DNA from environmental samples that might transform water safety by detecting waterborne pathogens directly instead of their surrogates. Yet emerging innovations such as metagenomics are often fiercely contested. Innovations are subject to shaping/construction not only by technology but also social systems/values in which they are embedded, such as experts’ attitudes towards new scientific evidence. We conducted a classic three-round Delphi survey, comprised of 107 questions. A multidisciplinary expert panel (n = 24) representing the continuum of discovery scientists and policymakers evaluated the emergence of metagenomics tests. To the best of our knowledge, we report here the first Delphi foresight study of experts’ attitudes on (1) the top 10 priority evidentiary criteria for adoption of metagenomics tests for water safety, (2) the specific issues critical to governance of metagenomics innovation trajectory where there is consensus or dissensus among experts, (3) the anticipated time lapse from discovery to practice of metagenomics tests, and (4) the role and timing of public engagement in development of metagenomics tests. The ability of a test to distinguish between harmful and benign waterborne organisms, analytical/clinical sensitivity, and reproducibility were the top three evidentiary criteria for adoption of metagenomics. Experts agree that metagenomic testing will provide novel information but there is dissensus on whether metagenomics will replace the current water safety testing methods or impact the public health end points (e.g., reduction in boil water advisories). Interestingly, experts view the publics relevant in a “downstream capacity” for adoption of metagenomics rather than a co-productionist role at the “upstream” scientific design stage of metagenomics tests. In summary, these findings offer strategic foresight to govern metagenomics innovations symmetrically: by identifying areas where acceleration (e.g., consensus areas) and deceleration/reconsideration (e.g., dissensus areas) of the innovation trajectory might be warranted. Additionally, we show how scientific evidence is subject to potential social construction by experts’ value systems and the need for greater upstream public engagement on metagenomics innovations.

Background: Noninvasive prenatal testing is a recent technology that provides some genetic information about the fetus through the analysis of cell-free fetal DNA circulating in maternal blood. We aimed to identify the benefits, challenges and guiding ethical principles most relevant to the clinical integration of noninvasive prenatal testing in Canada, according to experts throughout the country. Methods: We conducted a 3-round Delphi study involving Canadian experts of contemporary discussions about the ethical and societal implications of prenatal testing and genomic technologies. In round 1, we asked participants to identify clinical benefits and challenges related to the implementation of noninvasive prenatal testing in Canada, and the ethical principles they think should guide it. In round 2, we asked participants to select the most important elements stated by their peers. In round 3, participants were informed of the aggregated results from round 2, and invited to revise or confirm their selection. Results: Round 1 had a participation rate of 20.2%, and involved 61 participants. Subsequent rounds 2 and 3 had retention rates of 95.1% (n = 58) and 84.5% (n = 49), respectively. Through these discussions, we identified 3 lists of benefits (n = 10), challenges (n = 27), and ethical principles (n = 16) prioritized by Canadian experts as being most relevant to the implementation of noninvasive prenatal testing in Canada. Interpretation: Although multiple and diverse potential issues were identified, Canadian experts agreed on 2 sets of requirements for the responsible implementation of noninvasive prenatal testing in Canada. Interdisciplinary appraisals may be instrumental to responsible policy-making related to the implementation of noninvasive prenatal testing in Canada.