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Prepublication disclosure of scientific results: Norms, competition, and commercial orientation.

ABSTRACT: On the basis of a survey of 7103 active faculty researchers in nine fields, we examine the extent to which scientists disclose prepublication results, and when they do, why? Except in two fields, more scientists disclose results before publication than not, but there is significant variation in their reasons to disclose, in the frequency of such disclosure, and in withholding crucial results when making public presentations. They disclose results for feedback and credit and to attract collaborators. Particularly in formulaic fields, scientists disclose to attract new researchers to the field independent of collaboration and to deter others from working on their exact problem. A probability model shows that 70% of field variation in disclosure is related to differences in respondent beliefs about norms, competition, and commercialization. Our results suggest new research directions-for example, do the problems addressed or the methods of scientific production themselves shape norms and competition? Are the levels we observe optimal or simply path-dependent? What is the interplay of norms, competition, and commercialization in disclosure and the progress of science?

SUBMITTER: Thursby JG

PROVIDER: S-EPMC5955623 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Prepublication disclosure of scientific results: Norms, competition, and commercial orientation.

Thursby Jerry G JG Haeussler Carolin C Thursby Marie C MC Jiang Lin L

Science advances 20180516 5

On the basis of a survey of 7103 active faculty researchers in nine fields, we examine the extent to which scientists disclose prepublication results, and when they do, why? Except in two fields, more scientists disclose results before publication than not, but there is significant variation in their reasons to disclose, in the frequency of such disclosure, and in withholding crucial results when making public presentations. They disclose results for feedback and credit and to attract collaborat ...[more]

PMID: 29774233

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Project description:RationaleIndividuals who choose to obtain genetic information may learn that their genetic profile confers health risks to themselves or offspring. Individuals may react more negatively to this information when personal attitudes, perceived norms, and/or the decision to receive results conflict with one another.ObjectiveWe predicted that holding more negative attitudes (personal evaluations) or injunctive norms (perceptions of others' approval) toward obtaining genetic test results would prospectively predict greater conflict about the decision to undergo sequencing and less disclosure of sequencing results to family members. We also expected attitudes and norms to interact, such that attitudes would be negatively associated with decisional conflict and positively associated with disclosure when injunctive norms were positive, but weakly associated with outcomes when injunctive norms were negative.MethodParticipants (N=312) were enrolled in a genomic sequencing trial focused on identifying carrier genetic variants, reflecting a variant that might affect their biological children's or grandchildren's health. Participants reported attitudes and injunctive norms, underwent sequencing, and later received results indicating carrier status for at least one variant. Decisional conflict was assessed at immediate post-test, and 1- and 6-month follow-ups. Disclosure of results to children and siblings were assessed at 1 and 6 months.ResultsIn structural equation models with covariates, attitudes were negatively associated with post-test and 1-month decisional conflict. Injunctive norms were negatively associated with decisional conflict at 1 and 6 months and positively associated with disclosure to children and siblings at 1 month. The significant attitudes by injunctive norms interaction predicting post-test decisional conflict supported lower decisional conflict when attitudes, norms, and the decision to receive results were all aligned. Exploratory analyses supported indirect effects of attitudes and norms on 6-month sibling disclosure via 1- month decisional conflict.ConclusionResults support roles of psychosocial factors in decisional conflict and disclosure after receiving sequencing results.

Project description:Background: Noninvasive prenatal screening (NIPS) utilization has grown dramatically and is increasingly offered to the general population by nongenetic specialists. Web-based technologies and telegenetic services offer potential solutions for efficient results delivery and genetic counseling. Introduction: All major guidelines recommend patients with both negative and positive results be counseled. The main objective of this study was to quantify patient utilization, motivation for posttest counseling, and satisfaction of a technology platform designed for large-scale dissemination of NIPS results. Methods: The technology platform provided general education videos to patients, results delivery through a secure portal, and access to telegenetic counseling through phone. Automatic results delivery to patients was sent only to patients with screen-negative results. For patients with screen-positive results, either the ordering provider or a board-certified genetic counselor contacted the patient directly through phone to communicate the test results and provide counseling. Results: Over a 39-month period, 67,122 NIPS results were issued through the platform, and 4,673 patients elected genetic counseling consultations; 95.2% (n = 4,450) of consultations were for patients receiving negative results. More than 70% (n = 3,370) of consultations were on-demand rather than scheduled. A positive screen, advanced maternal age, family history, previous history of a pregnancy with a chromosomal abnormality, and other high-risk pregnancy were associated with the greatest odds of electing genetic counseling. By combining web education, automated notifications, and telegenetic counseling, we implemented a service that facilitates results disclosure for ordering providers. Discussion: This automated results delivery platform illustrates the use of technology in managing large-scale disclosure of NIPS results. Further studies should address effectiveness and satisfaction among patients and providers in greater detail. Conclusions: These data demonstrate the capability to deliver NIPS results, education, and counseling-congruent with professional society management guidelines-to a large population.

Project description:ImportanceClinical guidelines currently recommend against amyloid imaging for cognitively unimpaired persons. The goal of Alzheimer's disease (AD) prevention, together with advances in understanding the pathophysiology of AD, however, has led to trials testing drugs in cognitively unimpaired persons who show evidence of AD biomarkers. Assuming the eventual success of such trials, millions of patients will be affected. There is a need to understand the effects of biomarker disclosure on those individuals.DesignThe Study of Knowledge and Reactions to Amyloid Testing (SOKRATES) involved 2 semi-structured telephone interviews with individuals who received amyloid PET scan results as part of screening for research participation. Post-disclosure interviews were conducted at 4 to 12 weeks and again 1 year later. Data were collected from November 5, 2014 to November 30, 2016. Interviews were transcribed and coded in NVivo 12.0.Participants80 adults aged 65 and older: 50 who received "elevated" and 30 who received "not-elevated" amyloid PET scan results.Main outcomesInterviews examined four domains: (1) comprehension of the amyloid PET scan result; (2) implications of the result for sense of self, memory, and future; (3) sharing of results with others; and (4) AD risk-reduction behaviors.ResultsParticipants who received an elevated amyloid PET scan result viewed the result as more serious and sensitive than other medical test results given its unique implications for identity, self-determination, and stigma. In contrast, participants who received a not-elevated amyloid PET scan result described feeling relief and reinterpreted perceived memory impairments as normal aging. Participants with elevated amyloid reported contemplating and making more changes to health behaviors and future plans than their peers with not-elevated amyloid.ConclusionsClinical practice in the diagnosis and treatment of persons with preclinical AD, a stage of the disease defined by the presence of biomarkers in the absence of cognitive impairment, will need to address matters of identity, stigma, and life-planning.

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Prepublication disclosure of scientific results: Norms, competition, and commercial orientation.

Publications

Prepublication disclosure of scientific results: Norms, competition, and commercial orientation.

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