Personal medicine—the new banking crisis

Scott, Christopher Thomas; Caulfield, Timothy; Borgelt, Emily; Illes, Judy

doi:10.1038/nbt.2116

Cited by 81 publications

(53 citation statements)

References 8 publications

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“…What is "transparent" about broad consent is the lack of specificity and participants' lack of choice over the future use of their biologic contributions (Scott et al 2012)-not the kind of transparency participants in this study were looking for. Beyond this sample, members of the public, in general, have been requesting a more "informed" consent process for genomics research and are expressing opposition to the patenting and commercialization of genetic discoveries that may decrease access to genetic services (Caulfield et al 2003;Haddow et al 2007).…”

Section: Discussionmentioning

confidence: 99%

“…Still other ideas being discussed are public ownership of biobanks, profit payoffs to communities, and mechanisms to bring clinically significant outcomes back to biobank donors (Scott et al 2012). Common practices are developing as biobanks grow, but there is little consensus to date about standardized guidelines (Caulfield 2011), which leaves stakeholders like the African American community at a loss in making decisions about participation.…”

Section: Discussionmentioning

confidence: 99%

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Community leaders’ perspectives on engaging African Americans in biobanks and other human genetics initiatives

et al. 2013

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There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans' perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives. As the first phase in a mixed methods study, we conducted four focus groups with 21 African American community leaders in one US Midwest city. The sample consisted of executive directors of community organizations and prominent community activists. Data were analyzed thematically. Skepticism about biomedical research and lack of trust characterized discussions about biomedical research and biobanks. The Tuskegee Untreated Syphilis Study and the Henrietta Lacks case influenced their desire to protect their community from harm and exploitation. Connections between genetics and family history made genetics/genomics research personal, pitting intrusion into private affairs against solutions. Participants also expressed concerns about ethical issues involved in genomics research, calling attention to how research had previously been conducted in their community. Participants hoped personalized medicine might bring health benefits to their people and proposed African American communities have a "seat at the table." They called for basic respect, authentic collaboration, bidirectional education, transparency and prerogative, and meaningful benefits and remuneration. Key to building trust and overcoming African Americans' trepidation and resistance to participation in biobanks are early and persistent engagement with the community, partnerships with community stakeholders to map research priorities, ethical conduct of research, and a guarantee of equitable distribution of benefits from genomics discoveries.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Community leaders’ perspectives on engaging African Americans in biobanks and other human genetics initiatives

et al. 2013

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“…The reasons for the reactivity of PVA compared to other macromolecules bearing hydroxyl groups are still unknown. The formation and growth of ice is a serious problem in many technological processes such as storage and distribution of human tissue for regenerative and transplantation medicine [169,170]. RAFT was used to synthesise well-defined polymers in order to understand the role of molecular weight and the tolerance for structural modification such as hydrophobicity on the antifreeze activity.…”

Section: Poly(vinyl Ester)s As Precursors To Pvamentioning

confidence: 99%

RAFT Polymerization of Vinyl Esters: Synthesis and Applications

et al. 2014

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This article is the first comprehensive review on the study and use of vinyl ester monomers in reversible addition fragmentation chain transfer (RAFT) polymerization. It covers all the synthetic aspects associated with the definition of precision polymers comprising poly(vinyl ester) building blocks, such as the choice of RAFT agent and reaction conditions in order to progress from simple to complex macromolecular architectures. Although vinyl acetate was by far the most studied monomer of the range, many vinyl esters have been considered in order to tune various polymer properties, in particular, solubility in supercritical carbon dioxide (scCO 2 ). A special emphasis is given to novel poly(vinyl alkylate)s with enhanced solubilities in scCO 2 , with applications as reactive stabilizers for dispersion polymerization and macromolecular surfactants for CO 2 media. Other miscellaneous uses of poly(vinyl ester)s synthesized by RAFT, for instance as a means to produce poly(vinyl alcohol) with controlled characteristics for use in the biomedical area, are also covered.

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“…Even small differences in SOPs between groups or within groups could yield uninterpretable results due to variations at multiple steps in the collection and handling process. 13 The National Cancer Institute's Cancer Genome Atlas project was launched on the assumption that its researchers could obtain quality specimens provided by dozens of established biobanks with strong track records of success. Unfortunately, results indicated that very few of the initial samples were usable due to variability in collection, processing and storage in legacy biorepositories.…”

Section: Standardization and Best Practices Guidelinesmentioning

confidence: 99%

“…Unfortunately, results indicated that very few of the initial samples were usable due to variability in collection, processing and storage in legacy biorepositories. 13 Variables that may impact analytic outcomes include: 1) the type of blood collection tube and additive, 2) sample processing protocols, times and temperatures, 3) hemolysis, 4) transport conditions, 5) storage parameters (temperatures and freeze-thaw cycles). [14][15][16] These types of differences between samples have a significant impact on the stability of analytes causing deterioration in data quality.…”

Section: Standardization and Best Practices Guidelinesmentioning

confidence: 99%