Purpose
Despite important recent work, US public attitudes toward specific biobank consent models are not well understood. Public opinion data can help shape efforts to develop ethically sound and publicly trusted mechanisms for informing and consenting prospective biobank donors. The purpose of this study was to explore public perspectives toward a range of consent models currently being used or considered for use among comprehensive US biobanks.
Methods
The study used an exploratory mixed-methods design, using focus groups and telephone surveys. Eligible participants were English-speaking residents in the catchment area of a comprehensive biobank being developed at the University of Iowa.
Results
Forty-eight participants in seven focus groups and 751 survey participants were recruited. Biobanks were unfamiliar to almost all study participants but were seen as valuable resources. Most focus group (63%) and survey (67%) participants preferred a prospective opt-in over an opt-out consent approach. Broad, research-unspecific consent was preferred over categorical and study-specific consent models for purposes of approving future research use.
Conclusion
Many individuals may want to make an active and informed choice at the point of being approached for biobank participation but are prepared to consent broadly to future research use and to forego additional choices as a result.
This paper seeks to historicize Twitter within a longer historical framework of diaries to better understand Twitter and broader communication practices and patterns. Based on a review of historical literature regarding 18th and 19th century diaries, we created a content analysis coding scheme to analyze a random sample of publicly available Twitter messages according to themes in the diaries. Findings suggest commentary and accounting styles are the most popular narrative styles on Twitter. Despite important differences between the historical diaries and Twitter, this analysis reveals long-standing social needs to account, reflect, communicate, and share with others using media of the times.
In 2012-13 the Ministry of Business, Innovation and Employment (MBIE) in New Zealand rapidly implemented a major restructuring of national scientific research funding. The "National Science Challenges" (NSC) initiative aims to promote greater commercial applications of scientific knowledge, reflecting ongoing neoliberal reforms in New Zealand. Using the example of health research, we examine the NSC as a key moment in ongoing indigenous Māori advocacy against neoliberalization. NSC rhetoric and practice through 2013 moved to marginalize participation by Māori researchers, in part through constructing "Māori" and "science" as essentially separate arenas-yet at the same time appeared to recognize and value culturally distinctive forms of Māori knowledge. To contest this "neoliberal multiculturalism," Māori health researchers reasserted the validity of culturally distinctive knowledge, strategically appropriated NSC rhetoric, and marshalled political resources to protect Māori research infrastructure. By foregrounding scientific knowledge production as an arena of contestation over neoliberal values and priorities, and attending closely to how neoliberalizing tactics can include moves to acknowledge cultural diversity, this analysis poses new questions for social scientific study of global trends toward reconfiguring the production of knowledge about health. Study findings are drawn from textual analysis of MBIE documents about the NSC from 2012 to 2014, materials circulated by Māori researchers in the blogosphere in 2014, and ethnographic interviews conducted in 2013 with 17 Māori health researchers working at 7 sites that included university-based research centers, government agencies, and independent consultancies.
Few studies have explored public perspectives on community advisory board (CAB) involvement in biobank-based research. This study held focus groups (n = 7) with 48 individuals residing in the catchment of an emerging comprehensive tissue and DNA biobank in the state of Iowa. Participants recognized benefits of bringing CABs into biobank oversight, including additional levels of protection they could afford research participants. Yet, CAB goals of protecting participants were also seen as potentially antithetical to research and medical progress. Participants expressed uncertainty about the relationship of CABs to IRBs, communities, and industry. Findings suggest members of the public are in principle supportive of CAB involvement in biobanking, yet anticipate a range of problems and concerns. These perceptions will need to be proactively addressed.
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