Why is this important? (Important Because)
From The Embassy of Good Science
A description to provide more focus to the theme/resource (max. 200 words)
- ⧼SA Foundation Data Type⧽: Text
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In order to maintain high standards of research ethics, personal dignity and autonomy must be respected. To achieve this, before conducting research, researchers have to seek informed consent from participants. +
Internet can be used as a research tool to collect data (“non-intrusive analysis”) and as a venue when it engages the participants of the web source, i.e. human subjects (“engaged analysis”).'"`UNIQ--ref-00000002-QINU`"' However, this distinction can be blurred when it comes to social media, for example Facebook or Twitter where “participant recruitment”, data collection, analysis and dissemination can occur in the same space.'"`UNIQ--ref-00000003-QINU`"' Regardless of whether we use Internet as a tool or a venue, it is important to distinguish public and private data.'"`UNIQ--ref-00000004-QINU`"'
Dealing with private data and human subjects in research poses challenges related to privacy, anonymity and informed consent.'"`UNIQ--ref-00000005-QINU`"' Although it is not always clear whether online venues are public or private, some pointers might help to distinguish them. E-mail lists and closed online debates can be considered private because they are property of the community that created them.'"`UNIQ--ref-00000006-QINU`"' Some online settings determine for themselves whether their postings are public or private. For instance, a private and password-secured Facebook group can be considered private, while an open discussion on Twitter where users post their opinions on certain topics can be considered public.'"`UNIQ--ref-00000007-QINU`"'
Confirming the identity of participants of online sites can be challenging as well. People might use an avatar or adopt a username to participate in an online discussion, which makes difficult or impossible to contact them.'"`UNIQ--ref-00000008-QINU`"' Participants can even fabricate their identity. Students might have a parent or another student providing them with answers during an online test or a survey.'"`UNIQ--ref-00000009-QINU`"' One of the extreme cases is that of American blogger Debbie Swenson who pretended to be a teenager “Kaycee Nicole”, a fictitious online persona suffering from terminal leukemia. Swenson blogged about her condition and convinced the readers of her own death.'"`UNIQ--ref-0000000A-QINU`"'
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Privacy is important because it is considered a human right. All persons have the right to a private life, which is based on the idea that individual welfare is promoted. '"`UNIQ--ref-00000002-QINU`"' Individuals can do as they please, as long as others are not harmed in any way. If the harm outweighs the right to privacy, society can intervence. Privacy mainly concerns the protection of personal data. In a research setting, any information, such as names, addresses and other personal data, will usually be encrypted so that other research data cannot be traced back to an indvidual. However, with the rise of biobanks, privacy of (research) participants may be jeapordized. '"`UNIQ--ref-00000003-QINU`"' As the main purpose of biobanks is to collect tissue and DNA, this cannot be encrypted. DNA is unique to every person, and can thus be traced back to an indivual. Dealing with this is an important challenge in biobanking research.
Correspondingly, there are challenges in health data research'"`UNIQ--ref-00000004-QINU`"' as well as artificial intelligence'"`UNIQ--ref-00000005-QINU`"' and big data research.'"`UNIQ--ref-00000006-QINU`"'
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Use of animals in research has a long tradition and has been the subject of various debates. From ancient Greece, to physiological research of the 17th century and drug testing today, animals were used in place of human models to gain insight and improve knowledge. It is considered that animal research has contributed to about 70% of Nobel prizes in Medicine or Physiology. Various vaccines, antibiotics, insulin and organ transplants have been developed with help of animal research. In development and testing of new drugs, animal testing is still obligatory. New methods, such as computer simulations, models and cell and tissue cultures, have been used to replace animal research, but in some areas there is still no replacement of equal value. +
Research involving children is challenging for several reasons.
First, the close relationship between the researcher and the child. Children are potentially more vulnerable to unequal power relations with an adult researcher than other groups, and perhaps some children are not accustomed to adults who are interested in their views.
Second, elements of informed consent need to be explained in a child-friendly way. Children must be given sufficient information in a language they understand to enable them to make an informed decision to participate.
Third, protection of the identity of the research participants is very important so that the information collected will not harm them.
Fourth, can participation lead to a better awareness and understanding of one's health problem and ultimately to a better regulation of the underlying disease for a child? +
New drugs. procedures and treatments require detailed testing to ensure they are safe, effective and do not harm those undergoing the treatment or taking the drug. While a lot can be answered using in vitro experiments and animal testing, testing on humans is necessary in order to verify the safety and efficacy of novel treatments.'"`UNIQ--references-00000002-QINU`"' +
Throughout history, scientific experiments have been conducted on human beings without their consent, especially during the World War II. As a result, specific ethical guidelines for human experimentation were developed. One of the ethical milestones in clinical research is informed consent, a process in which researchers ask for a permission before enrolling participants in a trial.'"`UNIQ--ref-00000002-QINU`"'The decision to participate has to be freely given, without pressure or conflicting interests, and based on appropriate information. Prisoners, soldiers, migrants, and other vulnerable groups are often unable to give consent in a way that satisfies the appropriate voluntary conditions. Children and patients with severe psychiatric conditions or dementia do not have the required legal capacity for granting consent.
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<span lang="EN-GB">Authorship is a fundamental aspect of academic integrity, ensuring accountability, credibility, and proper attribution of contributions. Anonymity can complicate the verification and review process, making it harder to assess the quality and reliability of research. Additionally, journals and funding bodies require clear authorship attribution to uphold research integrity. However, in cases where anonymity is warranted, ethical guidelines must be carefully considered (2). Balancing the need for transparency with the potential risks of exposure is a challenge that institutions, researchers, and publishers must navigate.</span> +
A successful career for researchers is often equivalent to the production and acceptance of peer-reviewed manuscripts. In fact, the number of publications a researcher has is commonly used as a parameter for career progression or funding acquisition.
Authorship matters because the entire research and publication process relies on trust. Authorship conveys significant privileges, responsibilities, and legal rights, and it is fair that only those who have actively participated in the work should benefit from the positive aspects of being an author and being accountable for all aspects of the research.
Although the general guidelines on authorship are common sense, the pressure to be a productive scholar and problems resulting from different interpretations of the general guidelines have encouraged a number of questionable research practices. These include honorary authorship, gift authorship, prestige authorship, plagiarism, self-plagiarism, citation amnesia, multiple submissions and duplicate publication. +
When submitting an article to a journal, author’s consent for publication must be attached. Written formal consent ensures that the publisher has the author’s permission to publish research findings.'"`UNIQ--ref-00000015-QINU`"' With the consent, the author gives the publisher license of the copyright which provides the publisher with the exclusive right to publish and sell the research findings in all languages, in whole or in part.'"`UNIQ--ref-00000016-QINU`"' All authors guarantee that the research findings have not been previously published. If they were published, the authors should obtain permission necessary to publish it.'"`UNIQ--ref-00000017-QINU`"''"`UNIQ--ref-00000018-QINU`"'
However, scenarios with multiple authors can present difficulties for obtaining consent: One or more authors can refuse to give their consent, some authors cannot be tracked down,'"`UNIQ--ref-00000019-QINU`"' whereas sometimes authors withdraw the consent.'"`UNIQ--ref-0000001A-QINU`"' In case when not all authors give the consent, the article can be retracted.'"`UNIQ--ref-0000001B-QINU`"'
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Publishing certain research data, obtained in circumstances of confidentiality between researcher and participant, can be made accessible to the rest of the world'"`UNIQ--ref-00000011-QINU`"' and this can mean breaching of that confidentiality. This is why research participants need to know which data will be revealed to the public. In order to submit and subsequently publish case reports, authors have to obtain participant’s consent for publication. For example, in the case of unusual diagnosis in medical research or some details regarding the participant’s history (age, sex or occupation) along with the author’s name and affiliation that can reveal the participant’s identity, the participant’s consent is indispensable.'"`UNIQ--ref-00000012-QINU`"' Some of the examples of identifying information are descriptions of individual case histories, photographs, videos, x-rays or genetic pedigrees.'"`UNIQ--ref-00000013-QINU`"'
Researchers should inform participants that anyone who has access to Internet would be able to view the published article.'"`UNIQ--ref-00000014-QINU`"' Consent for publication should be obtained from participants or their legal guardians if the participants are under 16. In case of deceased persons, consent should be obtained by the deceased family or relatives.'"`UNIQ--ref-00000015-QINU`"' Consent is voluntarily and participant is free to withdraw it before the publication.'"`UNIQ--ref-00000016-QINU`"' +
Although SSH have embraced the practice of open access publishing, there is still a lot of room for progress, particularly regarding the access to the research monographs, one of the main dissemination outputs of these disciplines. Therefore, the main goal of HIRMEOS is to integrate the open access monographs into “open science ecosystem”'"`UNIQ--ref-0000000D-QINU`"' and to help increase the visibility and value of the SSH work.'"`UNIQ--ref-0000000E-QINU`"'
HIRMEOS also plans to contribute to dissemination of open access monographs by implementing advanced tools for researchers and publishers'"`UNIQ--ref-0000000F-QINU`"' and developing a set of services on the current platforms for open access monographs: identification service, annotation service, peer-review certification system, named entity recognition and metrics service.'"`UNIQ--ref-00000010-QINU`"' For example, identification service refers to developing tools which allow the unique identifiers for content (DOI) and authors (ORCID) automatically validate the published content via the Directory of Open Access Books ([https://www.doabooks.org/ DOAB]). Open annotation will add open peer-review and open commentary to the documents and link them through unique identification, which will enhance interactions with users. Finally, the usage metrics service will standardize usage measures on the documents and add usage indicators such as downloads and social media impact.'"`UNIQ--ref-00000011-QINU`"'
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Although many abstracts are available in different bibliographic databases, their use is limited in a number of ways. For example, they require a subscription, they are not machine-accessible, or are restricted to a one specific discipline.'"`UNIQ--ref-00000009-QINU`"' The most important benefits of open abstracts are their visibility, and easier use of text mining,'"`UNIQ--ref-0000000A-QINU`"' especially for researchers in developing countries who perhaps do not have the means for subscription to expensive journals.'"`UNIQ--ref-0000000B-QINU`"'
The initiative recommends scholarly publishers to make their abstracts more visible and easily accessible by depositing them to Crossref, a non-profit open repository that publishers use to register and share Digital Object Identifiers (DOIs) for their publications.'"`UNIQ--ref-0000000C-QINU`"' Through Crossref, research abstracts across disciplines will become easily searchable and machine-readable.'"`UNIQ--ref-0000000D-QINU`"' +
Citations are indispensable part of scholarly publications because they direct readers to sources, acknowledge other works in bibliographic references, help researchers avoid misconduct such as plagiarism, and enable the evaluation of publications.'"`UNIQ--ref-0000000F-QINU`"''"`UNIQ--ref-00000010-QINU`"'
Usually citation data are not freely accessible or machine-readable, which makes them unavailable to a great number of independent scholars.'"`UNIQ--ref-00000011-QINU`"''"`UNIQ--ref-00000012-QINU`"' To enhance their use, they should be available to everyone. They should also be structured (expressed in a machine-readable format), separable (available without the need to go to the source, such as articles or books), and open (freely accessible and reusable without restrictions).'"`UNIQ--ref-00000013-QINU`"''"`UNIQ--ref-00000014-QINU`"' Achieving this aim would be beneficial to independent researchers, publishers, funding agencies, academic institutions and the public in general.'"`UNIQ--ref-00000015-QINU`"'
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Whether access to scientific literature should be open or behind paywalls is a prominent topic of debate in the research community. In a 2018 analysis on open access publishing, it was estimated that 28% of all current journal articles are freely available online. '"`UNIQ--ref-00000005-QINU`"'This proportion has been growing over the last 20 years. In 2015, the most recent year that was examined, 45% of all articles were reported to be open access .'"`UNIQ--ref-00000006-QINU`"' The adoption of open access practices however differs between publishers and research fields.
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Journal editors often need to make difficult decisions about allegations of misconduct, authorship disputes, conflicts of interest, lack of ethical oversight of a submission, and so on. The COPE “Principles of Transparency and Best Practice in Scholarly Publishing” and “Core Practices” consist of guidelines and tools to assist editors, publishers and other stakeholders to “preserve and promote the integrity of the scholarly record through policies and practices that reflect the current best principles of transparency and integrity”. '"`UNIQ--ref-00000002-QINU`"'
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The integrity of the scientific record is important because published research serves as a basis for new research or application in practice. If the published report on research results is not correct, it may waste future research effort and, what is more dangerous, have direct adverse effects on the public. This is particularly relevant for health research because incorrect health research results may cause harm to patients or the general population. After publication, when it becomes apparent that the results and/or interpretations of an article are seriously flawed, an article can be retracted. Retraction differs from correction, where an article is corrected after publication. Retraction is more serious as a retracted paper should no longer be considered as a source of scientific knowledge. It is also a signal to alert other scholars of the errors. Main reasons for retraction are honest research errors, plagiarism, redundant publication, fabrication, falsification, experimental artefacts and unexplained irreproducibility. '"`UNIQ--ref-0000000A-QINU`"''"`UNIQ--ref-0000000B-QINU`"' The COPE guidelines state that retractions are not to punish the authors. In addition, authors of a paper, as well as others, can call for a retraction upon discovering errors. COPE guidelines state that retracted papers should be labelled as retracted and be accessible (both offline and online). Most journals have their own retraction guidelines. Over the years an increase in the percentage of retracted papers is observed. '"`UNIQ--ref-0000000C-QINU`"' The two possible explanations for this are 1) an increase in pressure to publish flawed papers or 2) an increase in detection of such flaws. '"`UNIQ--ref-0000000D-QINU`"' Nonetheless, retractions have an impact on the scientific community. First, it is a waste of resources, both in financial terms, time and participants. Second, when unnoticed, authors implicitly or explicitly use retracted sources as valid scientific results leading to decreasing trustworthiness of science. '"`UNIQ--ref-0000000E-QINU`"'
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Collaborations are becoming more frequent and gather anever increasing number of researcher. At the same time publications remain a key source of academic credit and career advancement. It is important to allocate credit for research contributions in a fair and transparent way.
The UK Research Integrity Office outlines why authorship standards matter:
“Correct authorship of research publications matters because authorship confers credit, carries responsibility, and readers should know who has done the research. Denying authorship to somebody who deserves it denies recognition and academic credit since publications are used to assess academic productivity. Including an undeserving author is unfair since this person gets credit for work they have not done. Omitting a deserving author from an author also list misleads readers (including journal editors) and may mask conflicts of interest.” '"`UNIQ--ref-00000005-QINU`"'
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Although the use of pre-print servers has been rising over the past decade, the COVID-19 pandemic has witnessed an unprecedented surge in the number of pre-prints. Fraser et al.<sup>5</sup> found that 25% or all articles on COVID-19 in the first 10 months of the pandemic (more than 30,000 manuscripts) were first posted as pre-prints. Besides attracting the attention of the scientific community, these manuscripts have also received substantial coverage in social media, news outlets and from the general public. <sup>6</sup> They have also played a crucial role in shaping the standard of care for COVID-19. In case of the RECOVERY trial, which studied the use of the steroid drug dexamethasone in critically ill COVID patients, the pre-publication of the benefits of the drug led to its prompt incorporation into treatment guidelines, and possibly benefited many gravely ill patients. <sup>7,8</sup>
On the other hand, disseminating information prior to peer review has also had negative consequences during the pandemic. A study that reported beneficial effects of a combination therapy of hydroxychloroquine and azithromycin was published in May 2020 on MedRxiv. <sup>9</sup> It was later withdrawn due to its questionable methodology, but not before it was widely publicized as being a “game-changer in the history of medicine” by a prominent political figure, leading to huge demands, severe shortages and indiscriminate use of these drugs. <sup>10</sup> Another paper that received widespread attention prior to its retraction reported an “uncanny similarity” between the protein structures or the COVID-19 virus and HIV, and concluded that this similarity was “unlikely to be fortuitous”, leading many to speculate that the pandemic was the result of a bioengineered weaponized virus. <sup>11,12</sup> Although the above examples are clear-cut and have been cited often, it is very likely that less evident instances of the misuse of non-peer reviewed information exist, making it a difficult challenge to address.
HARKing can increase the chance of falsely rejecting the null hypothesis, or type I error. '"`UNIQ--ref-00000002-QINU`"' Each time when a statistical analysis is being done, theories or hypotheses are formalized in terms of mathematical models. '"`UNIQ--ref-00000003-QINU`"' Models are built from main outcome measure and factors that are supposed to influence the main outcome measure. '"`UNIQ--ref-00000004-QINU`"' Factors that are supposed to determine the outcome measure are usually derived either from published research or data gathered in experiments or surveys. Once a model with satisfactory explanatory or predictive properties is built, it needs to be externally validated i.e. tested on a new, similar dataset. '"`UNIQ--ref-00000005-QINU`"' This is needed because model might be so well suited for the data on which it was built that it becomes too specific, and thus loses ability to be generalized on somewhat similar datasets. '"`UNIQ--ref-00000006-QINU`"' If we put this in more technical terms, some of explanatory or predictive factors in the model might correlate with real causes of effect only in our dataset but not in the other similar datasets.
Replication of studies is the way through HARKing can be recognized, '"`UNIQ--ref-00000007-QINU`"' but that’s only after the damage has been done. Pre-registration of studies, with clearly stated hypotheses and planned statistical analysis, is how we can hope to prevent HARKing.
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