Public engagement with genomics.

As detailed in its flagship report, Genome UK, the UK government recognises the vital role that broad public engagement across whole populations plays in the field of genomics. However, there is limited evidence about how to do this at scale. Most public audiences do not feel actively connected to science, are oftenunsure of the relevance to their lives and rarely talk to their family and friends about; we term this dis-connection a 'disengaged public audience'. We use a narrative review to explore: (i) UK attitudes towards genetics and genomics and what may influence reluctance to engage with these topics; (ii) innovative public engagement approaches that have been used to bring diverse public audiences into conversations about the technology. Whilst we have found some novel engagement methods that have used participatory arts, film, social media and deliberative methods, there is no clear agreement on best practice. We did not find a consistently used, evidence-based strategy for delivering public engagement about genomics across diverse and broad populations, nor a specific method that is known to encourage engagement from groups that have historically felt (in terms of perception) and been (in reality) excluded from genomic research. We argue there is a need for well-defined, tailor-made engagement strategies that clearly articulate the audience, the purpose and the proposed impact of the engagement intervention. This needs to be coupled with robust evaluation frameworks to build the evidence-base for population-level engagement strategies.

The legacy of language: What we say, and what people hear, when we talk about genomics.

The way we "talk" about genetics plays a vital role in whether public audiences feel at ease in having conversations about it. Our research explored whether there was any difference between "what we say" and "what people hear" when providing information about genetics to community groups who are known to be missing from genomics datasets. We conducted 16 focus groups with 100 members of the British public who had limited familiarity with genomics and self-identified as belonging to communities with Black African, Black Caribbean, and Pakistani ancestry as well as people of various ancestral heritage who came from disadvantaged socio-economic backgrounds. Participants were presented with spoken messages explaining genomics and their responses to these were analyzed. Results indicated that starting conversations that framed genomics through its potential benefits were met with cynicism and skepticism. Participants cited historical and present injustices as reasons for this as well as mistrust of private companies and the government. Instead, more productive conversations led with an acknowledgment that some people have questions-and valid concerns-about genomics, before introducing any of the details about the science. To diversify genomic datasets, we need to linguistically meet public audiences where they are at. Our research has demonstrated that everyday talk about genomics, used by researchers and clinicians alike, is received differently than it is likely intended. We may inadvertently be further disengaging the very audiences that diversity programs aim to reach.

The American Thoracic Society methods in epidemiologic, clinical, and operations research program. A research capacity-building program in low- and middle-income countries.

Respiratory diseases are a major cause of morbidity and mortality worldwide. The greatest impact of many of these diseases is felt in low- and middle-income countries, but their control and management is hampered by lack of accurate estimates of their prevalence, risk factors, and distribution, and knowledge of the social and cultural setting in which they occur. Providing enough information for cost-effective response to respiratory diseases requires research by trained investigators and public health personnel. The American Thoracic Society (ATS) Methods in Epidemiologic, Clinical, and Operations Research (MECOR) Program was launched in 1994 to provide a sustainable means of increasing local and national research capacity aimed at addressing this need. As of March 2013, approximately 1,015 students have completed at least one level of the training program. Post-MECOR, 64% of participants have published a medical paper, 79% have presented at a scientific or academic meeting, 51% have submitted a research protocol for funding, and 42% have had one funded. One-quarter have been awarded an academic or clinical fellowship, and 78% reported that MECOR had made a significant or extremely important contribution to their professional life and accomplishments. Future challenges include funding, recruitment of local faculty, helping to build the research infrastructure in MECOR countries, and providing ongoing mentoring for research.

Religion and organ donation: the views of UK faith leaders.

This article reports the findings from the one-to-one interviews with the main UK faith and belief leaders which were commissioned by the Organ Donation Taskforce as part of its evidence gathering. Interviews were arranged with the main faith and belief organisations within the UK. Interviews covered a range of issues related to organ donation. Although some faith groups had some reservations regarding organ donation, interviews with these leaders demonstrated that none of these faith groups have reached a consensus against organ donation. The interviewees stated that the majority opinion in their faith or belief group is to permit organ donation, with some actively supporting it. Interviewees were keen to stress that there is a broad spectrum of opinion on organ transplantation within each faith and belief group and that consequently it is difficult to speak on behalf of an entire group. One complication mentioned by interviewees is that as organ transplantation is a relatively new medical procedure, there is no explicit reference to it in many original religious texts. Consequently, positions on the receipt and donation of organs are based on interpretation. It was felt that a much greater level of engagement is needed, as organ donation is currently not a priority for many faith and belief groups.

'Opting-in or opting-out?'--the views of the UK's faith leaders in relation to organ donation.

INTRODUCTION: This article reports the findings from the interviews with the main United Kingdom faith and belief leaders which were commissioned by the Organ Donation Taskforce as part of its evidence gathering when exploring the potential impact of an opt-out system for organ donation. METHODOLOGY: 17 interviews were arranged with the main faith and belief organisations within the United Kingdom. Interviews covered a range of issues related to organ donation and opt-in and opt-out. RESULTS: The majority of faith and belief leaders are supportive of the opt-in system, and favour retaining it over the introduction of an opt-out system. Whilst the shortcomings of the current system are recognised, the majority felt that there is scope to make improvements without changing legislation. CONCLUSION: In order to achieve better engagement on organ donation with members of faith and belief groups in the future, it will be important to continue the dialogue that has begun with these interviews. It is important not only for the public to be aware of the position of faith and belief leaders, but also just as important for the medical profession and policy makers to recognise that all United Kingdom faith and belief leaders interviewed wish organ donation and transplantation to be a success.

Faith leaders united in their support for organ donation: findings from the UK Organ Donation Taskforce study.

SUMMARY: This article reports the findings from the one-to-one interviews with the main UK faith and belief leaders, which were commissioned by the Organ Donation Taskforce. Interviews were arranged with the main faith and belief organizations within the UK and covered a range of issues related to organ donation. No faith or belief groups were against organ donation in principle. The interviewees stated that the majority opinion in their faith or belief group is to permit organ donation, with some actively supporting it. Interviewees were keen to stress that there is a broad spectrum of opinions on organ transplantation within each faith and belief group, and that consequently it is difficult to speak on behalf of an entire group. One complication mentioned by interviewees is that as organ transplantation is a relatively new medical procedure, there is no explicit reference to it in many original religious texts. Consequently positions on the receipt and donation of organs are based on interpretation. It was felt that a much greater level of engagement is needed, as organ donation is currently not a priority for many faith and belief groups.