Policies by the National Institutes of Health and the National Science Foundation, as well as scandals surrounding failures to reproduce the findings of key studies in psychology, have generated increased calls for sharing research data. Most of these discussions have focused on quantitative, rather than qualitative, research data. This paper examines scientific, ethical, and policy issues surrounding sharing qualitative research data. We consider advantages of sharing data, including enabling verification of findings, promoting new research in an economical manner, supporting research education, and fostering public trust in science. We then examine standard procedures for archiving and sharing data, such as anonymizing data and establishing data use agreements. Finally, we engage a series of concerns with sharing qualitative research data such as the importance of relationships in interpreting data, the risk of re-identifying participants, issues surrounding consent and data ownership, and the burden of data documentation and depositing on researchers. For each concern, we identify options that enable data sharing or describe conditions under which select data might be withheld from a data repository. We conclude by suggesting that the default assumption should be that qualitative data will be shared unless concerns exist that cannot be addressed through standard data depositing practices such as anonymizing data or through data use agreements.
A mixed-method, exploratory design was used to examine 101 cases of sexual violations in medicine. The study involved content analysis of cases to characterize the physicians, patient-victims, the practice setting, kinds of sexual violations, and consequences to the perpetrator. In each case, a criminal law framework was used to examine how motives, means, and opportunity combined to generate sexual misconduct. Finally, cross-case analysis was performed to identify clusters of causal factors that explain specific kinds of sexual misconduct. Most cases involved a combination of five factors: male physicians (100%), older than the age of 39 (92%), who were not board certified (70%), practicing in nonacademic settings (94%) where they always examined patients alone (85%). Only three factors (suspected antisocial personality, physician board certification, and vulnerable patients) differed significantly across the different kinds of sexual abuse: personality disorders were suspected most frequently in cases of rape, physicians were more frequently board certified in cases of consensual sex with patients, and patients were more commonly vulnerable in cases of child molestation. Drawing on study findings and past research, we offer a series of recommendations to medical schools, medical boards, chaperones, patients, and the national practitioners database.
We found no studies in the United States that explored research participants' perspectives about sharing their qualitative data. We present findings from interviews with 30 individuals who participated in sensitive qualitative studies to explore their understanding and concerns regarding qualitative data sharing. The vast majority supported sharing qualitative data so long as their data were deidentified and shared only among researchers. However, they raised concerns about confidentiality if the data were not adequately deidentified and about misuse by secondary users if data were shared beyond the research community. These concerns, though, did not deter them from participating in research. Notably, participants hoped their data would be shared and may have expected or assumed this was already happening. While many could not recollect details about data‐sharing plans for studies in which they participated, they trusted researchers and institutions to appropriately handle data sharing. If individuals view data sharing as an extension or integral part of their participation in qualitative research, then researchers may have a stronger obligation to share qualitative data than previously thought. Guidelines and tools to assist researchers and institutional review board members in ethical and responsible qualitative data sharing are urgently needed.
Data sharing maximizes the value of data, which is time and resource intensive to collect. Major funding bodies in the United States (US), like the National Institutes of Health (NIH), require data sharing and researchers frequently share de-identified quantitative data. In contrast, qualitative data are rarely shared in the US but the increasing trend towards data sharing and open science suggest this may be required in future. Qualitative methods are often used to explore sensitive health topics raising unique ethical challenges regarding protecting confidentiality while maintaining enough contextual detail for secondary analyses. Here, we report findings from semi-structured in-depth interviews with 30 data repository curators, 30 qualitative researchers, and 30 IRB staff members to explore their experience and knowledge of QDS. Our findings indicate that all stakeholder groups lack preparedness for QDS. Researchers are the least knowledgeable and are often unfamiliar with the concept of sharing qualitative data in a repository. Curators are highly supportive of QDS, but not all have experienced curating qualitative data sets and indicated they would like guidance and standards specific to QDS. IRB members lack familiarity with QDS although they support it as long as proper legal and regulatory procedures are followed. IRB members and data curators are not prepared to advise researchers on legal and regulatory matters, potentially leaving researchers who have the least knowledge with no guidance. Ethical and productive QDS will require overcoming barriers, creating standards, and changing long held practices among all stakeholder groups.
Serious ethical violations in medicine such as sexual abuse, criminal prescribing of opioids, and unnecessary surgeries directly harm patients and undermine trust in the profession of medicine. We review the literature on violations in medicine and present an analysis of 280 cases. Nearly all cases involved repeated instances (97%) of intentional wrongdoing (99%), by males (95%) in non-academic medical settings (95%), with oversight problems (89%) and a selfish motive such as financial gain or sex (90%). Over half of cases involved a wrongdoer with a suspected personality disorder or substance use disorder (51%). Despite clear patterns, no factors provide readily observable red flags making prevention difficult. Early identification and intervention in cases requires significant policy shifts that prioritize the safety of patients over physician interests in privacy, fair processes, and proportionate disciplinary actions. We explore a series of ten questions regarding policy, oversight, discipline, and education options. Satisfactory answers to these questions will require input from diverse stakeholders to help society negotiate effective and ethically balanced solutions.
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