Glad You Asked: Participants' Opinions of Re-Consent for DbGap Data Submission

Ludman, Evette; Fullerton, Stephanie M.; Spangler, Leslie; Trinidad, Susan Brown; Fujii, Monica; Jarvik, Gail P.; Larson, Eric B.; Burke, Wylie

doi:10.1525/jer.2010.5.3.9

Cited by 124 publications

(125 citation statements)

References 15 publications

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“…Our results echo other studies that have found attitudes towards personal data sharing in research to be more complex than this, influenced by contextual factors and trust in research institutions. 16,17 Our findings reinforce that when researchers are trusted, many participants do not mind contributing identifiable personal data to multiple research projects provided that they are kept informed, to some extent, about the nature of the research they are contributing to [18][19][20] and that personal data sharing is undertaken more willingly by those who believe that research will yield concrete benefits, either for themselves, society, or both. [19][20][21] We have shown that concerns about personal data sharing are not fully addressed by focusing on the magnitude of the risk of an anonymity breech, and that views about confidentiality have plural origins.…”

Section: Discussionsupporting

confidence: 59%

Research participants’ attitudes towards the confidentiality of genomic sequence information

et al. 2013

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Respecting the confidentiality of personal data contributed to genomic studies is an important issue for researchers using genomic sequencing in humans. Although most studies adhere to rules of confidentiality, there are different conceptions of confidentiality and why it is important. The resulting ambiguity obscures what is at stake when making tradeoffs between data protection and other goals in research, such as transparency, reciprocity, and public benefit. Few studies have examined why participants in genomic research care about how their information is used. To explore this topic, we conducted semi-structured phone interviews with 30 participants in two National Institutes of Health research protocols using genomic sequencing. Our results show that research participants value confidentiality as a form of control over information about themselves. To the individuals we interviewed, control was valued as a safeguard against discrimination in a climate of uncertainty about future uses of individual genome data. Attitudes towards data sharing were related to the goals of research and details of participants' personal lives. Expectations of confidentiality, trust in researchers, and a desire to advance science were common reasons for willingness to share identifiable data with investigators. Nearly, all participants were comfortable sharing personal data that had been de-identified. These findings suggest that views about confidentiality and data sharing are highly nuanced and are related to the perceived benefits of joining a research study.

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Section: Discussionsupporting

confidence: 59%

Research participants’ attitudes towards the confidentiality of genomic sequence information

et al. 2013

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“…Pearce and Smith [27] on the other hand state that getting rid of identifiers is often not enough and pleads for restricted access. Many authors point to the necessity of contractual consent between data collector and study participant regarding the terms of use of personal data [25,47,84,86,89,[92][93][94][95][96]. While privacy issues apply to individual-related data, issues of ownership and rights of use concern all kinds of data.…”

Section: Legal Normsmentioning

confidence: 99%

“…Many authors describe the fear of falsification as a reason to withhold data [23,27,29,34,43,101]. Few authors see a potential "commercialization of research findings" [93] as a reason not to share data (see also: [34,36,92]). The most frequently mentioned withholding reason regarding the third party use of data is competitive misuse; the fear that someone else publishes with my data before I can (16 survey references, 13 text references).…”

Section: Adverse Usementioning

confidence: 99%

What Drives Academic Data Sharing?

2014

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Despite widespread support from policy makers, funding agencies, and scientific journals, academic researchers rarely make their research data available to others. At the same time, data sharing in research is attributed a vast potential for scientific progress. It allows the reproducibility of study results and the reuse of old data for new research questions. Based on a systematic review of 98 scholarly papers and an empirical survey among 603 secondary data users, we develop a conceptual framework that explains the process of data sharing from the primary researcher's point of view. We show that this process can be divided into six descriptive categories: Data donor, research organization, research community, norms, data infrastructure, and data recipients. Drawing from our findings, we discuss theoretical implications regarding knowledge creation and dissemination as well as research policy measures to foster academic collaboration. We conclude that research data cannot be regarded as knowledge commons, but research policies that better incentivise data sharing are needed to improve the quality of research results and foster scientific progress.

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“…Genome Research 1003 www.genome.org the institutional review process at one of these sites resulted in a requirement that investigators re-consent participants specifically for GWAS data sharing (Ludman et al 2010). The IRB at the three other sites determined that the broad consent originally obtained from participants allowed data sharing.…”

Section: Data-sharing Challengesmentioning

confidence: 99%

Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience

McGuire

Basford

Dressler³

et al. 2011

Genome Res.

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In 2007, the National Human Genome Research Institute (NHGRI) established the Electronic MEdical Records and GEnomics (eMERGE) Consortium (www.gwas.net) to develop, disseminate, and apply approaches to research that combine DNA biorepositories with electronic medical record (EMR) systems for large-scale, high-throughput genetic research. One of the major ethical and administrative challenges for the eMERGE Consortium has been complying with existing data-sharing policies. This paper discusses the challenges of sharing genomic data linked to health information in the electronic medical record (EMR) and explores the issues as they relate to sharing both within a large consortium and in compliance with the National Institutes of Health (NIH) data-sharing policy. We use the eMERGE Consortium experience to explore data-sharing challenges from the perspective of multiple stakeholders (i.e., research participants, investigators, and research institutions), provide recommendations for researchers and institutions, and call for clearer guidance from the NIH regarding ethical implementation of its data-sharing policy.

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Glad You Asked: Participants' Opinions of Re-Consent for DbGap Data Submission

Cited by 124 publications

References 15 publications

Research participants’ attitudes towards the confidentiality of genomic sequence information

Research participants’ attitudes towards the confidentiality of genomic sequence information

What Drives Academic Data Sharing?

Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience

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