A blog from the Centre for Research Ethics & Bioethics (CRB)

Month: November 2024

World Health Organization outlines guidelines for the use of genomic data

Human genomics has potential to improve the health of individuals and populations for generations to come. It also requires the collection, use and sharing of data from people all over the world. There is therefore an accompanying need for a globally fair distribution of genomic technology, data and results. As the databases and infrastructures will be in operation for a long time, ethical, legal, social and cultural issues need to be taken into account from the outset, considering the entire life cycle of the data.

To promote such an ethical, equitable and responsible use of genomic data, the World Health Organization (WHO) recently issued globally applicable guidelines for human genome data collection, access, use and sharing. The guidelines are formulated as 8 principles with associated practical recommendations. The principles were developed step by step, first through review of existing documents and virtual consultation with experts from different parts of the world, then through a workshop in Geneva where experts met on site. Finally, the draft was discussed through public consultations.

The purpose of the WHO document is to create globally applicable principles that can complement local legislation. This is to promote, among other things, social and cultural inclusiveness as well as justice in the use of human genome data.

Read the important document here: Guidance for human genome data collection, access, use and sharing.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

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Approaching future issues

Citizen scientists as co-authors

A recurring theme on this blog is the question of who can be counted as an author of a research article. You might be thinking: how difficult can it be to determine if someone is the author of an article? But the criteria for academic authorship are challenged on several fronts and therefore need to be discussed. I recently blogged about a debate about two of these challenges: huge research projects where a large number of researchers and experts in different fields contribute to the studies, and the use of AI in research and academic writing (for example ChatGPT).

Today I want to recommend an article on publication ethics that discusses a third challenge to the authorship criteria. The challenge is called citizen science. Similar to the big research collaborations I mentioned above, a very large number of individuals often contribute to citizen science. The difference is that the professional researchers here collaborate with voluntary participants from the general public and not just with other researchers or experts. It may involve ordinary citizens reporting their observations of plant and animal life, helping astronomers categorize large amounts of photographed astronomical objects, contributing to solutions to mathematical problems or perhaps even discussing the design of research projects. Citizen science is important, for example, when data collection requires the efforts of so many observers in so many places, that the observations would otherwise be too expensive or time-consuming. Citizen science is also important because it gives citizens insight into research, increases trust in science and creates contacts between research and society.

The so-called Vancouver rules for authorship have been criticized for allegedly excluding citizen scientists from authorship, even though the voluntary contributions are sometimes so significant that they could merit such recognition. The rules state (slightly simplified) that to count as an author you must have made significant contributions to the research study (e.g., design, data collection, analysis, interpretation). But you must also have participated in the writing process, approved the final version of the article, and accepted responsibility for the research being carried out correctly.

An important point in the article that I recommend is that it is not necessarily the Vancouver rules that exclude citizen scientists from authorship. On the contrary, it may be that the researchers leading the projects do not follow the rules. In addition to the four criteria above, the Vancouver rules say that individuals who meet the first criterion should be given the opportunity to meet the other three as well. Citizen scientists who have made significant contributions to the study should therefore be given the opportunity to write or revise relevant sections of the text, approve the final version and accept responsibility for the accuracy of at least their own contribution to the study. In citizen science, it is also often the case that a small number of “superusers” account for the bulk of the work effort. It should be possible to treat these individuals in the same way as one treats professional researchers who have made significant contributions, that is, give them the opportunity to qualify for authorship.

A more difficult issue discussed in the article is group authorship. In citizen science, the collective contribution of the whole group is often significant, while the individual contributions are not. Would it be possible to give the group collective credit in the form of group authorship? Not doing so could give a false impression that the professional researchers made a greater effort in the study than they actually did, the four publication ethicists argue in the article. It can also be unfair. If individual researchers who fulfill the first criterion should be given the opportunity to fulfill all criteria, then groups should also be given this opportunity. In such cases, the group should (in some way) be given the opportunity to participate in the critical revision of the article and to approve the final version. But can a group of 2,000 volunteer bird watchers take responsibility for a research study being carried out properly? Perhaps the group can at least answer for the accuracy of its own observation efforts. Being credited for one’s contribution to a study through authorship and taking responsibility for the contribution are two sides of the same coin, according to the publication ethicists. That citizen scientists must accept responsibility in order to be counted as co-authors is perhaps also an opportunity to convey something about the nature of science, one could add.

The article concludes by proposing seven heuristic rules regarding who can be included as an author. For example, one should, as far as possible, respect existing guidelines (such as the Vancouver rules), apply a wide conception of contributions, and be open to new forms of authorship. Perhaps a group can sometimes be credited through authorship? The seventh and final heuristic rule is to be generous to citizen scientists in unclear cases by including rather than excluding.

Read the article on citizen scientists as authors here: Authorship and Citizen Science: Seven Heuristic Rules.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Sandin, P., Baard, P., Bülow, W., Helgesson, G. Authorship and Citizen Science: Seven Heuristic Rules. Science and Engineering Ethics 30, 53 (2024). https://doi.org/10.1007/s11948-024-00516-x

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We recommend readings

Nurses’ experiences of tube feeding under restraint for anorexia

The eating disorder anorexia (anorexia nervosa) is a mental disorder that can be life-threatening if it is not treated. It is characterized by fear of gaining weight: you starve yourself to lose weight and do not understand that being underweight is dangerous. Even if most recover, the disease is associated with increased mortality and the most severely ill may need to be hospitalized.

Hospital care can involve both psychotherapy and drug treatment, but not everyone wants or is able to participate in the treatment, which of course also involves eating. They may lack motivation to change or refuse to see that they need treatment. If the malnutrition becomes life-threatening, it may be necessary to decide on tube feeding as a compulsory measure. Liquid nutrition is then given via a thin tube that is inserted through one nostril and down into the stomach.

Tube-feeding an adult who does not want to eat is reasonably a challenge for the nurses who have to perform the procedure. What are their experiences of the measure like? One study investigated the issue by interviewing nurses at a Norwegian inpatient ward where adult patients with severe anorexia were cared for. What did the nurses have to say?

An important theme was that one strove to provide good care even during the coercive measure. It must be so good that the patient voluntarily wants to stay in the ward after tube feeding. For example, the measure is never taken until one has gradually tried to encourage the patient to eat, asked the patient about the situation and discussed whether to use the tube instead. If tube feeding becomes necessary, one still tries to give the patient options, one tries to respect the patient’s autonomy as much as possible, even if it is a coercive measure. The nurses also described difficulties in balancing kindness and firmness during the procedure, difficulties in combining the role of being a helper and being a controller.

Another theme was ethical concerns when the doctor decided on tube feeding even though the patient’s BMI was not so low that the condition was life-threatening. One nurse stated that she sometimes found such situations so problematic that she refused to take part in the procedure.

The third theme was concerns about calling in staff from another ward to help restrain the patient while the nurse performed the tube feeding. Some nurses were concerned about how this might be experienced by patients with a history of abuse. Others saw the tube feeding as a life-saving measure and experienced no ethical concerns. However, participants in the study emphasized that tube feeding affects the relationship with the patient and that restraint can disrupt the relationship. A nurse told how she once performed tube feeding on a patient she had never met before, and with whom she had therefore not established a relationship, and how this then prevented a good relationship with that patient.

If you want to read for yourself what the nurses said and how the authors discussed their findings, read the study here: Nurses’ experience of nasogastric tube feeding under restraint for Anorexia Nervosa in a psychiatric hospital.

Interview studies that capture human experience through the participants’ own stories often yield unexpectedly meaningful insights. Subtle details of human life that you would not otherwise have thought of appear in the interview material. One such insight from this study was how the nurses made great efforts so that tube feeding could be perceived as good care with respect for the patient’s autonomy and dignity, despite the fact that it is a coercive measure. It also became clear that there were tensions in the situation that the nurses had difficulty dealing with, such as first performing the coercive measure and then comforting the patient and re-establishing the relationship that had been disrupted. One of the conclusions in the article is therefore that even the nurses who perform tube feeding are vulnerable.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Brinchmann, B.S., Ludvigsen, M.S. & Godskesen, T. Nurses’ experience of nasogastric tube feeding under restraint for Anorexia Nervosa in a psychiatric hospital. BMC Medical Ethics 25, 111 (2024). https://doi.org/10.1186/s12910-024-01108-x

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Ethics needs empirical input