Public Opinion about the Importance of Privacy in Biobank Research

Concerns about privacy may deter people from participating in genetic research. Recruitment and retention of biobank participants requires understanding the nature and magnitude of these concerns. Potential participants in a proposed biobank were asked about their willingness to participate, their privacy concerns, informed consent, and data sharing. A representative survey of 4659 U.S. adults was conducted. Ninety percent of respondents would be concerned about privacy, 56% would be concerned about researchers having their information, and 37% would worry that study data could be used against them. However, 60% would participate in the biobank if asked. Nearly half (48%) would prefer to provide consent once for all research approved by an oversight panel, whereas 42% would prefer to provide consent for each project separately. Although 92% would allow academic researchers to use study data, 80% and 75%, respectively, would grant access to government and industry researchers. Concern about privacy was related to lower willingness to participate only when respondents were told that they would receive $50 for participation and would not receive individual research results back. Among respondents who were told that they would receive $200 or individual research results, privacy concerns were not related to willingness. Survey respondents valued both privacy and participation in biomedical research. Despite pervasive privacy concerns, 60% would participate in a biobank. Assuring research participants that their privacy will be protected to the best of researchers'' abilities may increase participants'' acceptance of consent for broad research uses of biobank data by a wide range of researchers.     

Authorship and medical ghostwriting: Plastic and Reconstructive Surgery policy

Authorship of biomedical articles serves to acknowledge and credit individuals who contributed substantially to the development, writing, and editing of articles. In addition, authorship indicates who is responsible for ideas and experiments, and can be used to hold people accountable if something is disproven or shown false. Types of authorship can be divided into four primary categories: ghost authorship, guest authorship, gift authorship, and legitimate authorship. Of these four categories, Plastic and Reconstructive Surgery (along with other journals, the World Association of Medical Editors, the International Committee of Medical Journal Editors, the Council of Science Editors, and the Committee on Publication Ethics) affirms that only authors who meet the criteria of "legitimate authorship" as authors should be listed on an article. This article discusses what constitutes legitimate article authorship and sets forth the Journal's policy on authorship.     

The Use and Abuse of Transcranial Magnetic Stimulation to Modulate Corticospinal Excitability in Humans

The magnitude and direction of reported physiological effects induced using transcranial magnetic stimulation (TMS) to modulate human motor cortical excitability have proven difficult to replicate routinely. We conducted an online survey on the prevalence and possible causes of these reproducibility issues. A total of 153 researchers were identified via their publications and invited to complete an anonymous internet-based survey that asked about their experience trying to reproduce published findings for various TMS protocols. The prevalence of questionable research practices known to contribute to low reproducibility was also determined. We received 47 completed surveys from researchers with an average of 16.4 published papers (95% CI 10.8–22.0) that used TMS to modulate motor cortical excitability. Respondents also had a mean of 4.0 (2.5–5.7) relevant completed studies that would never be published. Across a range of TMS protocols, 45–60% of respondents found similar results to those in the original publications; the other respondents were able to reproduce the original effects only sometimes or not at all. Only 20% of respondents used formal power calculations to determine study sample sizes. Others relied on previously published studies (25%), personal experience (24%) or flexible post-hoc criteria (41%). Approximately 44% of respondents knew researchers who engaged in questionable research practices (range 32–70%), yet only 18% admitted to engaging in them (range 6–38%). These practices included screening subjects to find those that respond in a desired way to a TMS protocol, selectively reporting results and rejecting data based on a gut feeling. In a sample of 56 published papers that were inspected, not a single questionable research practice was reported. Our survey revealed that approximately 50% of researchers are unable to reproduce published TMS effects. Researchers need to start increasing study sample size and eliminating—or at least reporting—questionable research practices in order to make the outcomes of TMS research reproducible.     

Knowledge of undisclosed corporate authorship ("ghostwriting") reduces the perceived credibility of antidepressant research: a randomized vignette study with experienced nurses

ABSTRACT: BACKGROUND: There is much concern regarding undisclosed corporate authorship ("ghostwriting") in the peer-reviewed medical literature. However, there are no studies of how disclosure of ghostwriting alone impacts the perceived credibility of research results. FINDINGS: We conducted a randomized vignette study with experienced nurses (n = 67), using a fictional study of antidepressant medication. The vignette described a randomized controlled trial and gave efficacy and adverse effect rates. Participants were randomly assigned to one of two authorship conditions, either (a) traditional authorship (n = 35) or (b) ghostwritten paper (n = 32), and then completed a perceived credibility scale. Our primary hypothesis was that the median perceived credibility score total would be lower in the group assigned to the ghostwritten paper. Our secondary hypotheses were that participants randomized to the ghostwritten condition would be less likely to (a) recommend the medication, and (b) want the psychiatrist in the vignette as their own clinician. We also asked respondents to estimate efficacy and adverse effect rates for the medication. There was a statistically significant difference in perceived credibility among those assigned to the ghostwriting condition. This amounted to a difference of 9.0 points on the 35-point perceived credibility scale as tested through the Mann--Whitney U test. There was no statistically significant difference between groups in terms of recommending the medication, wanting the featured clinician as their own, or in estimates of efficacy or adverse effects (p > .05 for all such comparisons). CONCLUSION: In this study, disclosure of ghostwriting resulted in lower perceived credibility ratings.     

The anti-intellectual effects of intellectual property

Intellectual property considerations decrease research productivity in subtle and unanticipated ways. Chemical probe exchange between Pharma and academia is hindered by academic IP interests. These are perceived as a subtle nuisance by the academic researcher. Novel ligands for oral targets are historically few and numbers of economically attractive oral drug targets are limited. Economically speculative targets lie in the academic domain but the medicinal chemistry to explore these in a drug discovery sense lies in Pharma and cooperation between the two is hindered by very different academic and Pharma views on chemical quality. Tools and probes for academic target validation can accommodate looser chemical quality criteria as opposed to the very strict chemical quality criteria required in Pharma drug discovery.     

General practice postal surveys: a questionnaire too far?

A primary care led NHS, driven by evidence based practice, needs to build on a firm foundation of research in primary care. As researchers are making increasing use of questionnaire surveys to assess general practitioners'' views and attitudes, so response rates to questionnaire surveys among general practitioners are dropping. The reasons include lack of perceived relevance of the research and lack of information and feedback about it, and researchers need to be more aware of the realities of everyday practice. Approaches that might reverse this trend include monitoring all research activities going on in an area to ensure that practices are not overused, giving general practitioners incentives to participate, and improving the relevance of research and the quality of questionnaires.     

Dora the Brave

The San Francisco Declaration on Research Assessment (DORA) points out that using the Journal Impact Factor as a proxy measure for the value or quality of specific research and individual scientists leads to biased research assessment. How can we resist misusing metrics?If you notice any particularly fidgety journal editors this month don''t worry—this is merely a symptom of the imminent release of the next round of the dreaded, dreadful Journal Impact Factors (JIFs). Editors are concerned, because the JIF directly impacts their journal, as it influences if researchers choose it to publish their research. JIF has a number of flaws, but one entirely outside an editor''s control is noise: a few citations to a single paper can displace a journal in the IF rank list pecking order. Indeed, the JIF would appear to be elaborated to the astonishing significance of three decimal places precisely to minimize the number of ties in journal ranking tables—even if this is at the expense of statistical significance (see ASCB post “A False Sense of Precision”).Matters are worse for journals just below an arbitrary IF threshold set by research assessment policies. A few years ago, when this journal dipped below 10, its editors were on occasion invited back by senior faculty to discuss submission of their work once the JIF had returned to a level deemed relevant by their institution. The only immunity to such JIF excesses appears to be to sport a well-recognized journal name in lieu of perceived JIF deficiencies. Indeed, the remarkable influence of brand recognition is borne testament by the rapid proliferation of journal families around a number of well-recognized names.As always, there will be winners and losers in this year''s JIF league tables—but do these numbers reflect real differences in the quality and interest of the science published in the affected journals?     

Biosecurity and the review and publication of dual-use research of concern

Dual-use research of concern (DURC) is scientific research with significant potential for generating information that could be used to harm national security, the public health, or the environment. Editors responsible for journal policies and publication decisions play a vital role in ensuring that effective safeguards exist to cope with the risks of publishing scientific research with dual-use implications. We conducted an online survey of 127 chief editors of life science journals in 27 countries to examine their attitudes toward and experience with the review and publication of dual-use research of concern. Very few editors (11) had experience with biosecurity review, and no editor in our study reported having ever refused a submission on biosecurity grounds. Most respondents (74.8%) agreed that editors have a responsibility to consider biosecurity risks during the review process, but little consensus existed among editors on how to handle specific issues in the review and publication of research with potential dual-use implications. More work is needed to establish consensus on standards for the review and publication of dual-use research of concern in life science journals.     

A Survey on Hong Kong Secondary School Students' Knowledge of Emergency Management of Dental Trauma

Objectives

To investigate Hong Kong secondary school students'' knowledge of emergency management of dental trauma.

Method

A questionnaire survey on randomly selected secondary school students using cluster sampling.

Results

Only 36.6% (209/571) of the respondents were able to correctly identify the appropriate place for treatment of dental injury. 55.2% of the respondents knew the suitable time for treatment. Only 24.7% of the respondents possessed the knowledge of how to correctly manage fractured teeth. Only 23.6% of them knew how to manage displaced teeth. 62.5% of them correctly answered that knocked-out deciduous teeth should not be replanted to the original position, but few of them (23.6%) knew that permanent teeth should be replanted. Moreover, 37.1% of the respondents correctly identified at least one of the appropriate media for storing a knocked-out tooth. First-aid training and acquisition of dental injury information from other sources were significant factors that positive responses from these questions would lead to higher scores.

Conclusion

Hong Kong secondary school students'' knowledge of emergency management of dental trauma is considered insufficient. An educational campaign in secondary schools dedicated to students is recommended. Prior first-aid training and acquisition of dental injury information from other sources positively relate to the level of knowledge. Dental trauma emergency management is recommended to be added to first-aid publications and be taught to students and health professionals.Trial Registration: Hong Kong Clinical Trial Centre HKCTR-1344     

Patient-physician sexual involvement: a Canadian survey of obstetrician-gynecologists.

OBJECTIVE: To determine obstetrician-gynecologists'' (ob-gyns'') awareness of and experience with sexual abuse of patients and former patients and their opinions about appropriate consequences. DESIGN: Mailed survey. SETTING: Canada. PARTICIPANTS: All 792 members of the Society of Obstetricians and Gynaecologists of Canada (SOGC); 618 (78%) responded. Approximately half of all ob-gyns in Canada belong to the SOGC. MAIN OUTCOME MEASURES: Knowledge of sexual involvement by an ob-gyn colleague with a patient or former patient (as defined by the respondents and by the College of Physicians and Surgeons of Ontario [CPSO]), self-report of such involvement, attitudes toward physician sexual abuse, desirable length of time a physician should wait before seeing a former patient in a situation that could lead to a sexual encounter, suggested consequences of sexual abuse. RESULTS: Overall, 10% of the respondents indicated that they knew about another ob-gyn who at some time had been sexually involved with a patient. In all, 3% of the male respondents and 1% of the female respondents reported sexual involvement with a patient; the corresponding proportions of those who reported having been accused of sexual abuse by a patient were 4% and 2%. Significantly more of the female ob-gyns than of their male counterparts (37% v. 19%) reported awareness of a colleague''s sexual involvement with a patient that would meet the CPSO''s definition of sexual impropriety, transgression or violation. Most of the respondents felt that the consequence of proven sexual impropriety should be reprimand and fine (chosen by 33%) or rehabilitation without loss of licence (28%). Most of the physicians supported loss of licence for proven sexual transgression (57%) or proven sexual violation (74%), but fewer felt that loss of licence should be permanent for these types of abuse (4% and 24% respectively). The female ob-gyns supported stronger sanctions against sexual transgression and sexual violation than the male ob-gyns. A wide range of opinion was seen regarding the propriety of sexual relationships with former patients. CONCLUSIONS: Ob-gyns have varied opinions about how sexual abuse of patients should be defined and how it should be sanctioned. There is a discrepancy between proposed public policy and the beliefs of physicians to whom the policy is to be applied.     

The use of infants in drug research when there is no direct benefit to them: a survey of Canadian health care professionals serving on ethics committees.

Canadian health care professionals and lawyers serving on ethics committees were questioned about their views on pharmacokinetic research in newborn infants who are not likely to benefit directly from the results. Of the 50 respondents 13 felt that blood samples should be taken only for therapeutic reasons; 10 of the 13 argued that additional blood samples should not be taken, because there is no direct benefit to the infant; and 8 felt that proxy consent cannot be given for invasive nontherapeutic research. Four of the five participating lawyers would not permit additional blood samples to be taken. Of the 37 respondents who would permit additional blood samples to be taken, 27 felt that the number of samples taken should depend on the researcher''s justification for that number of samples; only 7 of the respondents had a clear idea of what the "upper limit" of the number of blood samples should be.     

Residents' experiences of abuse,discrimination and sexual harassment during residency training. McMaster University Residency Training Programs.

OBJECTIVE: To assess the prevalence of psychological abuse, physical assault, and discrimination on the basis of gender and sexual orientation, and to examine the prevalence and impact of sexual harassment in residency training programs. DESIGN: Self-administered questionnaire. SETTING: McMaster University, Hamilton, Ont. PARTICIPANTS: Residents in seven residency training programs during the academic year from July 1993 to June 1994. Of 225 residents 186 (82.7%) returned a completed questionnaire, and 50% of the respondents were women. OUTCOME MEASURES: Prevalence of psychological abuse, physical assault and discrimination on the basis of gender and sexual orientation experienced by residents during medical training, prevalence and residents'' perceived frequency of sexual harassment. RESULTS: Psychological abuse was reported by 50% of the residents. Some of the respondents reported physical assault, mostly by patients and their family members (14.7% reported assaults by male patients and family members, 9.8% reported assaults by female patients and family members), 5.4% of the female respondents reported assault by male supervising physicians. Discrimination on the basis of gender was reported to be common and was experienced significantly more often by female residents than by male residents (p < 0.01). Ten respondents, all female, reported having experienced discrimination on the basis of their sexual orientation. Most of the respondents experienced sexual harassment, especially in the form of sexist jokes, flirtation and unwanted compliments on their dress or figure. On average, 40% of the respondents, especially women (p < 0.01), reported experiencing offensive body language and receiving sexist teaching material and unwanted compliments on their dress. Significantly more female respondents than male respondents stated that they had reported events of sexual harassment to someone (p < 0.001). The most frequent emotional reactions to sexual harassment were embarassment (reported by 24.0%), anger (by 23.4%) and frustration (20.8%). CONCLUSION: Psychological abuse, discrimination on the basis of gender and sexual harassment are commonly experienced by residents in training programs. A direct, progressive, multidisciplinary approach is needed to label and address these problems.     

Cross sectional survey of parents' experience and views of the postmortem examination

ObjectiveTo describe parents'' experience and views of the postmortem examination after the loss of a baby.DesignCross sectional survey.SettingHospital with a dedicated bereavement counselling service, Newcastle upon Tyne.Participants258 women who had attended a bereavement counselling service at the Royal Victoria Infirmary, Newcastle upon Tyne, on at least one occasion after losing a baby during pregnancy or infancy, between October 1996 and October 2000.MethodSelf completion postal questionnaire incorporating fixed choice and open ended questions.Results166 (64%) respondents completed the questionnaire. Of these, 148 (89%) had been asked to agree to a postmortem examination on their baby and 120/148 of these respondents (81%) agreed, most of whom recognised benefits resulting from the examination. 101/117 (86%) respondents believed the findings had been explained appropriately. Nine (7%) of the 120 respondents who had agreed to a postmortem examination regretted their decision. Of the respondents who refused an examination, four (14%) had regrets about their decision.DiscussionParents viewed the postmortem examination as a useful and necessary tool in helping to discover the reasons why their baby had died. Simplifying the language used to explain findings may further raise parents'' understanding of the value of the postmortem examination and ensure that they are satisfied with it. Medical staff involved in consent for postmortem examinations should be fully trained in how to ask for parental consent, the postmortem examination procedure, and how to explain the findings.

What is already known on this topic

Current literature relates mainly to health professionals'' views of the postmortem examinationThe perceived benefits of having a postmortem examination relate mainly to improving understanding of the circumstances leading to the death of the baby

What this study adds

Every family should be offered the opportunity for a postmortem examinationThe benefits and limitations of the postmortem examination should be explained so that expectations of the outcome are appropriateMedical concepts and terminology should be fully explained during follow up and families given the opportunity to ask questions at a later date if necessary