Bermuda 2.0: reflections from Santa Cruz.

In February 1996, the genome community met in Bermuda to formulate principles for circulating genomic data. Although it is now 20 years since the Bermuda Principles were formulated, they continue to play a central role in shaping genomic and data-sharing practices. However, since 1996, "openness" has become an increasingly complex issue. This commentary seeks to articulate three core challenges data-sharing faces today.

Selective flows of knowledge in technoscientific interaction: information control in genome research.

In recent years, the selective flow of knowledge has emerged as an important topic in historical and social studies of science. Related questions about the production of ignorance have also captured attention under the rubric of agnotology. This paper focuses on information control in interaction, examining how actors seek to control the flow of scientific knowledge as they interact with others, either in face-to-face encounters or in modes of communication involving circulating documents, data, materials and other entities containing knowledge. The analysis uses an ethnographic approach to study how actors work to control which knowledge becomes available to whom, when, under what terms and conditions, and with what residual encumbrances. Secrecy, for example, is not framed as an isolated, sui generis phenomenon, nor as one side of a secrecy/openness dichotomy, nor even as a pole on a secrecy/openness continuum. Instead, the analysis explores how actors manage a dialectic of revelation and concealment through which knowledge is selectively made available and unavailable to others, often in the same act. The emphasis on selective revelation highlights partial transfers of knowledge, targeted distribution, matters of timing, and the rights and encumbrances that attach to knowledge at different points in its transit. Examples are drawn from genome research, a field marked by ongoing disputes about modes of information control.

Data withholding in genetics and the other life sciences: prevalences and predictors.

PURPOSE: To better understand the variety and prevalence of data withholding in genetics and the other life sciences and to explore factors associated with these behaviors. METHOD: In 2000, a sample of 2,893 geneticists and other life scientists (OLS) at the 100 most research-intensive universities in the United States were surveyed concerning data withholding and sharing. The instrument was developed and pretested in 1999. The two primary outcome measures were withholding in verbal exchanges with colleagues about unpublished research (verbal withholding) and withholding as part of the publishing process (publishing withholding). The independent variables related to the personal characteristics, research characteristics of faculty, and previous experience with data withholding. RESULTS: A total of 1,849 faculty responded (64%): 1,240 geneticists and 600 OLS. Forty-four percent of geneticists and 32% of OLS reported participating in any one of 13 forms of data withholding in the three previous years. Publishing withholding (geneticists 35%, OLS 25%) was more frequent than verbal withholding (geneticists 23%, OLS 12%). In multivariate analyses, male gender, participation in relationships with industry, mentors' discouraging data sharing, receipt of formal instruction in data sharing, and negative past experience with sharing were significantly associated with either verbal or publishing withholding among either geneticists or OLS. CONCLUSIONS: Data withholding is common in biomedical science, takes multiple forms, is influenced by a variety of characteristics of investigators and their training, and varies by field of science. Encouraging openness during the formative experiences of young investigators may be critical to increased data sharing, but the effects of formal training do not appear straightforward.

Data withholding in academic genetics: evidence from a national survey.

CONTEXT: The free and open sharing of information, data, and materials regarding published research is vital to the replication of published results, the efficient advancement of science, and the education of students. Yet in daily practice, the ideal of free sharing is often breached. OBJECTIVE: To understand the nature, extent, and consequences of data withholding in academic genetics. DESIGN, SETTING, AND PARTICIPANTS: Mailed survey (March-July 2000) of geneticists and other life scientists in the 100 US universities that received the most funding from the National Institutes of Health in 1998. Of a potential 3000 respondents, 2893 were eligible and 1849 responded, yielding an overall response rate of 64%. We analyzed a subsample of 1240 self-identified geneticists and made a limited number of comparisons with 600 self-identified nongeneticists. MAIN OUTCOME MEASURES: Percentage of faculty who made requests for data that were denied; percentage of respondents who denied requests; influences on and consequences of withholding data; and changes over time in perceived willingness to share data. RESULTS: Forty-seven percent of geneticists who asked other faculty for additional information, data, or materials regarding published research reported that at least 1 of their requests had been denied in the preceding 3 years. Ten percent of all postpublication requests for additional information were denied. Because they were denied access to data, 28% of geneticists reported that they had been unable to confirm published research. Twelve percent said that in the previous 3 years, they had denied another academician's request for data concerning published results. Among geneticists who said they had intentionally withheld data regarding their published work, 80% reported that it required too much effort to produce the materials or information; 64%, that they were protecting the ability of a graduate student, postdoctoral fellow, or junior faculty member to publish; and 53%, that they were protecting their own ability to publish. Thirty-five percent of geneticists said that sharing had decreased during the last decade; 14%, that sharing had increased. Geneticists were as likely as other life scientists to deny others' requests (odds ratio [OR], 1.39; 95% confidence interval [CI], 0.81-2.40) and to have their own requests denied (OR, 0.97; 95% CI, 0.69-1.40). However, other life scientists were less likely to report that withholding had a negative impact on their own research as well as their field of research. CONCLUSIONS: Data withholding occurs in academic genetics and it affects essential scientific activities such as the ability to confirm published results. Lack of resources and issues of scientific priority may play an important role in scientists' decisions to withhold data, materials, and information from other academic geneticists.

Disputed dimensions of risk: a public school controversy over AIDS.

Analysis of court hearings in a case to prevent a child with AIDS from attending school reveals how perceptions of risk are shaped by a range of cultural, political, and institutional factors. The many actors in this ritualized verbal combat sought to control interpretations of evidence, scientific credibility, legitimacy of decision-making procedures, and the balance of rights and responsibilities. Technocratic authority may be less important than symbolic and political issues in determining acceptability of risk.