National population-based biobanks for genetic research

Swede, Helen; Stone, Carol L.; Norwood, Alyssa R.

doi:10.1097/gim.0b013e3180330039

Cited by 96 publications

(69 citation statements)

References 36 publications

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“…In the past decade, large population biobanks have been developed at many academic medical institutions [Howard University College of Medicine and First Genetic Trust Form Biobank, 2003;Kaiser, 2006;NUgene, 2007;Swede et al, 2007], and even at the national level in countries such as the UK, Sweden, Estonia, and Iceland [Golding et al, 2001;Austin et al, 2003;Hirtzlin et al, 2003;Swede et al, 2007]. Several biobanks have focused on collecting samples during pregnancy, often with cord blood taken postdelivery [Chase et al, 1998;Golding et al, 2001;Ronningen et al, 2006;NewGeneris Cohorts and Biobanks, 2007; University of Auckland, 2007].…”

Section: Introductionmentioning

confidence: 99%

Empirical data about women's attitudes toward a biobank focused on pregnancy outcomes

Joseph

Neidich

Ober

et al. 2008

American J of Med Genetics Pt A

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The Chicago Lying-in Pregnancy Program (CLIPP) is a biobank designed to collect biological samples from pregnant women to study issues related to pregnancy. Despite the large number of biobanking initiatives in obstetric populations around the world, there is no published research that examines what pregnant women understand about enrollment into such programs and what their attitudes and beliefs are toward the research and its potential outcomes. Postpartum women 18 years or older who delivered at the University of Chicago Hospitals and had live infants on the General Care Nursery service were approached about participating in a survey about the CLIPP biobank and about a hypothetical pediatric biobank. Ninetythree women who had been recruited to participate in CLIPP agreed to participate in this research. Sixty-three women (68%) had previously agreed to participate in CLIPP; and 30 (32%) had refused. Both participants and non-participants understood that CLIPP had the main goal of advancing science, although almost one-half of the respondents thought that participation in CLIPP would benefit the individual participants. Eighty-five (92%) correctly believed that the research team would keep the medical information private. There was widespread optimism that the research would yield significant results. Importantly, there was no difference in these beliefs between those who enrolled and those who did not enroll in CLIPP. While education and socioeconomic status correlated with greater understanding about the methods and goals of the program, greater understanding did not correlate with willingness to participate. Our survey found widespread willingness to enroll in a pregnancy-focused biobank and optimism that the results will yield significant benefits. ß

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Section: Introductionmentioning

confidence: 99%

Empirical data about women's attitudes toward a biobank focused on pregnancy outcomes

Joseph

Neidich

Ober

et al. 2008

American J of Med Genetics Pt A

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“…Further, a number of studies manage to present themselves as being the first on topics, despite several others having been published before -as would have been revealed by anything more than a rudimentary Medline search. Also, the importance of informed consent is continually explained by attributing it to the Nuremberg Code following the trials after the Second World War (Kristinsson and Árnason, 2007;Swede et al, 2007). However, informed consent was not introduced with the Nuremberg Code (which mentioned only voluntary consent); it was already embedded in the law in Germany in August 1931 but, unfortunately, it did little to protect the Jews, homosexuals and others in the concentration camps.…”

Section: State Of the Art In The Field Of Ethics?mentioning

confidence: 99%

“…Other problems also prevail in the literature. It is assumed that genetic research in Iceland was supposed to rely on presumed consent (Greely, 2007;Swede et al, 2007), basic errors concerning names of biobanks or when they were established as well as confusion of laws regulating therapeutic and research biobanks are fairly common etc. (Gassner, 2007;Maschke, 2005;Weir and Olick, 2004).…”

Section: State Of the Art In The Field Of Ethics?mentioning

confidence: 99%

The Ethics of Research Biobanking: A Critical Review of the Literature

Hoeyer

2008

Biotechnology and Genetic Engineering Reviews

102

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Human tissue has been stored and used for research on a regular basis for more than 80 years. During the 1990s, collections of human tissue suddenly became framed as ethical problems in a process reflecting developments in genetic research intertwined with developments in patient rights and steps towards increased commercialization of research. This review describes the process of framing tissue storage as an ethical problem and the solutions proposed in the process. It gives an overview of the academic debate and relates this debate to empirical studies of donor attitudes and interests. It points to the clear discrepancy between the concerns of donors, legislators and ethicists. The academic debate and legislatory action tend to focus on informed consent, and most of the concerns that donors have remain unattended to.

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“…In the past decade, large population biobanks have been developed at many academic medical institutions [Kaiser, 2006;Howard University, 2007;NUgene Project, 2007;Swede et al, 2007], and even at the national level in countries such as the UK, Sweden, Estonia and Iceland [Chase et al, 1998;Golding et al, 2001;Austin et al, 2003;Hirtzlin et al, 2003;Ronningen et al, 2006;Swede et al, 2007]. The participants in these biobanks give a general consent for the researchers to use their samples for not-yet defined research projects.…”

Section: Introductionmentioning

confidence: 99%

Empirical data about women's attitudes towards a hypothetical pediatric biobank

Neidich

Joseph

Ober

et al. 2008

American J of Med Genetics Pt A

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Researchers at the University of Chicago sought institutional review board (IRB) approval to establish both an obstetrical biobank (Chicago Lying‐in Pregnancy Program [CLIPP]) and a pediatric biobank (KidsGene). Before KidsGene was approved, the IRB requested additional ethical review. The research ethics consultation service noted that no empirical data existed about parental attitudes towards this type of project. Postpartum women 18 years or older who delivered at the University of Chicago Hospitals and had live infants on the General Care Nursery service were approached about participating in a survey about the CLIPP biobank and about a hypothetical pediatric biobank. Two hundred thirty‐nine women were consented and completed most or all of the survey. Eighty‐two percent self‐classified as Black and seven percent were Caucasians. Caucasians were the most willing to enroll their children hypothetically into a pediatric biobank with non‐Black minorities being the most uncertain about what they would do. Almost half of the women thought that the research had the main goal of advancing science although a similar number expressed the belief that the research had the main goal of helping their individual child. Women supported use of the samples for a wide array of pediatric conditions. Comprehension of research practices, trust in medical researchers, and a belief that the research findings would be used fairly correlated with enrollment. Our survey found that most women support biobank development for research purposes. Most respondents expressed optimism that the results will yield significant benefits and that the benefits will be distributed fairly. © 2008 Wiley‐Liss, Inc.

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National population-based biobanks for genetic research

Cited by 96 publications

References 36 publications

Empirical data about women's attitudes toward a biobank focused on pregnancy outcomes

Empirical data about women's attitudes toward a biobank focused on pregnancy outcomes

The Ethics of Research Biobanking: A Critical Review of the Literature

Empirical data about women's attitudes towards a hypothetical pediatric biobank

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