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

Tag: empirical ethics (Page 1 of 4)

Living with rheumatoid arthritis: how do patients perceive their interaction with healthcare and a self-care app?

Not all diseases can be cured, but medication along with other measures can alleviate the symptoms. Rheumatoid arthritis is one such disease. Medicines for symptoms such as swellings and stiffness have become very effective. As a patient, you can find good ways to live with the disease, even if it can mean more or less regular contacts with healthcare (depending on how you are affected). Not only with the doctor who prescribes medication, but often with an entire healthcare team: doctor, nurse, physiotherapist, occupational therapist and counselor. There are aids that make everyday life easier, such as orthopedic shoes, splints and easier-to-grip faucets at home, and many hospitals also offer patients education about the disease and how you can live and function with it, at home as well as at work.

The symptoms vary, not only between individuals but also for the same individual over time. The need for care and support is thus individual and changing. Therefore, it is important that the interaction between patient and healthcare works efficiently and with sensitivity to the patient’s unique situation at the moment. Since patients to a great extent have to deal with their illness on their own, and over time become increasingly knowledgeable about their own disease, it is important to listen to the patient. Not only to improve the patient’s experience of healthcare, but also to ensure that individual patients receive the care and support they need at the right moment. The patient may not be part of the healthcare team, but is still one of the most important team players.

There are digital self-care applications for rheumatoid arthritis, where the patients who choose to use the tools can get advice and information about the disease, prepare for contacts with healthcare, and keep a digital logbook about their symptoms, experiences and lifestyle. Such digital self-care apps can be assumed to make patients even more knowledgeable about their own disease. The logbook contains relevant observations, which the patient can describe in the meetings with the healthcare provider. What an asset to the care team!

Given the importance of good continuous team play between patient and healthcare in diseases such as rheumatoid arthritis, it is important that researchers regularly examine how patients experience the interaction. Jennifer Viberg Johansson, Hanna Blyckert and Karin Schölin Bywall recently conducted an interview study with patients at various hospitals in Sweden. The aim was to investigate not only the patients’ experiences of the interaction with healthcare, but also their experiences of a digital self-care app, and how the app affected the communication between patient and doctor.

The patients’ perception of their interaction with healthcare varied greatly. About half felt prioritized and excellently supported by the healthcare team and half felt neglected, some even dehumanized. This may reflect how different hospitals have different resources and competencies for rheumatoid arthritis, but also unclear communication about what the patients can expect. Many patients found the self-care app both useful and fun to use, and a good support when preparing for healthcare visits. At the same time, these detailed preparations could lead to even greater disappointment when it was felt that the doctor was not listening and barely looking at the patient.

Collaborative teamwork and clear communication is identified in the study as important contributing factors to patients’ well-being and ability to manage their illness. The patients valued time for dialogue with the rheumatologist and appreciated when their personal observations of life with the disease were listened to. Because some of the interviewed patients had the negative experience that the doctor did not listen to the observations they had compiled in the app, the authors believe that the use of digital tools should be promoted by the healthcare system and there should be an agreement on how the tool should be used at meetings to plan care and support.

For more details about the patients’ experiences, read the article here: Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study.

The study emphasizes the importance of patient-centered care for individuals with rheumatoid arthritis, as well as the importance of considering patients’ psychological well-being alongside their physical health. An important point in the study could perhaps be summarized as follows: appreciate the patient as a skilled team player.

Pär Segerdahl

Written by…

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

Viberg Johansson J, Blyckert H, Schölin Bywall K. Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study. BMJ Open 2023;13:e072274. doi: 10.1136/bmjopen-2023-072274

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In dialogue with patients

Medical ethics conference in Uppsala, 10–11 June 2024

Since 2022, an annual conference in medical ethics is organized by Swedish universities. The first conference was organized by Lund University and the second by Karolinska Institutet. The next conference will be arranged on 10–11 June 2024 by us at the Centre for Research and Bioethics at Uppsala University. Conference names vary with the host university, our conference in June is thus named UMEC – Uppsala University Medical Ethics Conference.

We welcome researchers in medical ethics broadly conceived from Sweden as well as other countries, and oral presentations must be in English. If you would like to present your work at the conference, you are welcome to submit an abstract no later than March 31, 2024. We are interested in both normative approaches and empirical studies with normative relevance for issues in clinical ethics, public health ethics, research ethics and medical law.

We hope you want to attend the conference. You can find more information about the abstract and presentation as well as about the conference venue and travel options here: UMEC – Uppsala University Medical Ethics Conference.

Please note that the information is still incomplete and that more details will come as we get closer to the conference date.

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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Empirical ethics nuances ethical issues

A few years ago, my colleague Pär Segerdahl published a blog post on why bioethicists do empirical studies. He pointed out that surveys and interview studies on what people think hardly provide evidence that can decide controversial ethical issues, for example whether euthanasia should be allowed. Empirical studies rather give us a better grasp of the problem itself. They help us see what is actually at stake for people. I agree with him that ethical issues are not decided by surveys and interview studies and that such studies rather help us to see more clearly the meaning of the issues.

In this post, I want to further exemplify how empirical methods can nuance ethical questions and help us see what is at stake for people: help us see what we need to consider in the ethical discussion. I have in mind how, through a well-considered choice of empirical method, one can better describe the relative importance of ethical difficulties, values and preferences among stakeholders, as well as conflicts between ethical views. How? I am thinking of methods where respondents do not just answer what they think on certain individual issues, but are faced with complex scenarios where several factors are simultaneously at stake. Even if you have the firm opinion that drugs should not have side effects, are you perhaps still prepared to choose such a drug if it is more effective against your symptoms than other drugs, or is cheaper, or easier to use? In such studies, we create a multidimensional world with nuances for respondents to make complex decisions in.

Here is my example: Soon, therapies based on human embryonic stem cells may become a reality for patients with Parkinson’s disease. But is it morally acceptable to use human embryonic stem cells (hESC) for drug therapy? This has long been a controversial issue, partly because the embryo is destroyed when the stem cells are harvested. Perhaps the question is about to become even more topical now, when countries are changing legislation in a direction that gives the embryo a higher status and more legal protection. It is therefore particularly important that research provides a nuanced picture of the issues. In light of the political landscape and the new possibilities for treating patients with Parkinson’s, a more complex empirical method can support a better contemporary discussion about what types of research and therapies are within the scope of what can be allowed to be done with an embryo. The discussion concerns both ethics and law and must also include scientific challenges to ensure that stem cell research and therapies are carried out in ethically acceptable ways.

A common way to empirically examine the ethical issue is to look at the ethical arguments for and against the destruction of human embryos: to examine how different actors think and feel about this. Undoubtedly, such studies help us see what is at stake. But they can also easily steer respondents towards a yes-or-no answer, a pro-or-against attitude. Therefore, it is important to choose an empirical method that elicits perceived benefits and risks and explores multiple dimensions of the problem. How do patients feel about taking a medicine based on leftover embryos that not only relieves their symptoms but also repairs the damage, while the level of knowledge is low? It is not easy to answer such a question, but reality often has this complexity.

One method that can stage such complex considerations is a choice-based survey called Discrete Choice Experiments (DCE). With that method, we can investigate ethically sensitive issues and use the results to describe more fully the relative importance of ethical difficulties, values and preferences among stakeholders, as well as conflicts between ethical views. DCE provides an understanding of the balance between factors involved in different situations. In a new article in BMC Medical Ethics, my colleagues and I have investigated which factors are associated with the preferences of patients with Parkinson’s disease regarding embryonic stem cell-based treatments for the disease in the future. We invited patients to participate in a web-based choice-based experiment to assess the importance of the following factors: (1) type of treatment, (2) purpose of the treatment, (3) available knowledge about different types of treatment, (4) effect on symptoms and (5) the risk of serious side effects. The results showed that the fourth factor, “effect on symptoms,” was the most important factor in the choice of treatment option. Patients’ previous experience with treatment, side effects and advanced treatment therapy, as well as religious beliefs were associated with what they thought was most important, but not their view of what an embryo is. If you want to read more, you can find the article here: Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment.

These kinds of results from DCE studies can, in my opinion, help us to understand and frame ethical questions in ways that reflect how people think when multiple factors are at stake simultaneously. I believe that the more realistic complexity of such studies can contribute to more informed ethical considerations. I believe that they could also strengthen democratic processes by giving public conversation a background of more nuanced empirical findings.

Written by…

Jennifer Viberg Johansson, Associate Professor in Medical Ethics at Uppsala University’s Centre for Research Ethics & Bioethics.

Bywall, K.S., Drevin, J., Groothuis-Oudshoorn, C. et al. Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment. BMC Med Ethics 24, 83 (2023). https://doi.org/10.1186/s12910-023-00966-1

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Ethics needs empirical input

Keys to more open debates

We are used to thinking that research is either theoretical or empirical, or a combination of theoretical and empirical approaches. I want to suggest that there are also studies that are neither theoretical nor empirical, even though it may seem unthinkable at first. This third possibility often occurs together with the other two, with which it is then interwoven without us particularly noticing it.

What is this third, seemingly unthinkable possibility? To think for yourself! Research rarely runs completely friction-free. At regular intervals, uncertainties appear around both theoretical and empirical starting points, which we have to clarify for ourselves. We then need to reflect on our starting points and perhaps even reconsider them. I am not referring primarily to how new scientific findings can justify re-examination of hypotheses, but to the continuous re-examinations that must be made in the research process that leads to these new findings. It happens so naturally in research work that you do not always think about the fact that you, as a researcher, also think for yourself, reconsider your starting points during the course of the work. Of course, thinking for yourself does not necessarily mean that you think alone. It often happens in conversations with colleagues or at research seminars. But in these situations there are no obvious starting points to start from. The uncertainties concern the starting points that you had taken for granted, and you are therefore referred to yourself, whether you think alone or with others.

This thinking, which paradoxically we do not always think we are doing, is rarely highlighted in the finished studies that are published as scientific articles. The final publication therefore does not give a completely true picture of what the research process looked like in its entirety, which is of course not an objection. On the contrary, it would be comical if autobiographical details were highlighted in scientific publications. There you cannot usually refer to informal conversations with colleagues in corridors or seminar rooms. Nevertheless, these conversations take place as soon as we encounter uncertainties. Conversations where we think for ourselves, even when it happens together. It would hardly be research otherwise.

Do you see how we ourselves get stuck in an unclear starting point when we have difficulty imagining the possibility of academic work that is neither theoretical nor empirical? We then start from a picture of scientific research, which focuses on what already completed studies look like in article form. It can be said that we start from a “façade conception” of scientific work, which hides a lot of what happens in practice behind the façade. This can be hard to come to terms with for new PhD students, who may think that researchers just pick their theoretical and empirical starting points and then elaborate on them. A PhD student can feel bad as a researcher, because the work does not match the image you get of research by reading finished articles, where everything seems to go smoothly. If it did, it would hardly be research. Yet, when seeking funding and ethics approval, researchers are forced to present their project plans as if everything had already gone smoothly. That is, as if the research had already been completed and published.

If what I am writing here gives you an idea of how easily we humans get stuck in unclear starting points, then this blog post has already served as a simple example of the third possibility. In this post, we think together, for ourselves, about an unclear starting point, the façade conception, which we did not think we were starting from. We open our eyes to an assumption which at first we did not see, because we looked at everything through it, as through the spectacles on the nose. Such self-examination of our own starting points can sometimes be the main objective, namely in philosophical studies. There, the questions themselves are already expressions of unclear assumptions. We get entangled in our starting points. But because they sit on our noses, we also get entangled in the illusion that the questions are about something outside of us, something that can only be studied theoretically and empirically.

Today I therefore want to illustrate how differently we can work as researchers. This by suggesting the reading of two publications on the same problem, where one publication is empirical, while the other is neither empirical nor theoretical, but purely philosophical. The empirical article is authored by colleagues at CRB; the philosophical article by me. Both articles touch on ethical issues of embryo donation for stem cell research. Research that in the future may lead to treatments for, for example, Parkinson’s disease.

The empirical study is an interview study with individuals who have undergone infertility treatment at an IVF clinic. They were interviewed about how they viewed leftover frozen embryos from IVF treatment, donation of leftover embryos in general and for cell-based treatment of Parkinson’s disease in particular, and much more. Such empirical studies are important as a basis for ethical and legal discussions about embryonic stem cell research, and about the possibility of further developing the research into treatments for diseases that today lack effective treatments. Read the interview study here: Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals who underwent IVF in Sweden.

The philosophical study examines concerns about exploitation of embryo donors to stem cell research. These concerns must be discussed openly and conscientiously. But precisely because issues of exploitation are so important, the debate about them risks being polarized around opposing starting points, which are not seen and cannot be reconsidered. Debates often risk locking positions, rather than opening our minds. The philosophical study describes such tendencies to be misled by our own concepts when we debate medical research, the pharmaceutical industry and risks of exploitation in donation to research. It wants to clarify the conditions for a more thoughtful and open discussion. Read the philosophical study here: The Invisible Patient: Concerns about Donor Exploitation in Stem Cell Research.

It is easy to see the relevance of the empirical study, as it has results to refer to in the debate. Despite the empirical nature of the study, I dare to suggest that the researchers also “philosophized” about uncertainties that appeared during the course of the work; that they thought for themselves. Perhaps it is not quite as easy to see the relevance of the purely philosophical study, since it does not result in new findings or normative positions that can be referred to in the debate. It only helps us to see how certain mental starting points limit our understanding, if they are not noticed and re-examined. Of what use are such philosophical exercises?

Perhaps the use of philosophy is similar to the use of a key that fits in the lock, when we want to get out of a locked room. The only thing is that in philosophy we often need the “key” already to see that we are locked up. Philosophical keys are thus forged as needed, to help us see our attachments to unclear starting points that need to be reconsidered. You cannot refer to such keys. You must use them yourself, on yourself.

While I was writing this “key” post, diligent colleagues at CRB published another empirical study on the use of human embryonic stem cells for medical treatments. This time an online survey among a random selection of Swedish citizens (reference and link below). The authors emphasize that even empirical studies can unlock polarized debates. This by supplementing the views of engaged debaters, who can sometimes have great influence, with findings on the views of the public and affected groups: voices that are not always heard in the debate. Empirical studies thus also function as keys to more open and thoughtful discussions. In this case, the “keys” are findings that can be referred to in debates.

– Two types of keys, which can contribute in different ways to more open debates.

Pär Segerdahl

Written by…

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

Bywall, K.S., Holte, J., Brodin, T. et al. Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden. BMC Med Ethics 23, 124 (2022). https://doi.org/10.1186/s12910-022-00864-y

Segerdahl, P. The Invisible Patient: Concerns about Donor Exploitation in Stem Cell Research. Health Care Analysis 30, 240–253 (2022). https://doi.org/10.1007/s10728-022-00448-2

Grauman, Å., Hansson, M., Nyholm, D. et al. Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment. BMC Med Ethics 23, 138 (2022). https://doi.org/10.1186/s12910-022-00878-6

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We need to care about care ethics

At some point in our lives, we will all need to be cared for. When that happens, it is of course crucial that the people who care for us have the medical competence and skills required to diagnose and treat us. But we also need professional care to be nursed back to health. Providing care requires both medical and ethical skills, for example when weighing risks against the benefits of treatment and when giving information or encouraging patients to follow advice and instructions. Patients also need to be given tools and space to exercise their autonomy when making decisions about their own treatment and care. As a researcher in care ethics, this is the kind of questions that I ponder: questions that matter to us throughout life. The one who brings us into this world will need care during pregnancy, birth and after delivering the baby. Newborns, premature babies and children that are injured during birth need to be cared for, together with their families. As a child, you might have an ear infection, or need patching up after falling off your bike. As adults, illness will visit us on several occasions, and being cared for at the end of life is of utmost importance. We often face difficult choices in relation to health, sickness and treatment and need support from health care professionals in order to make autonomous decisions. Care ethics encompasses all of these ethical dilemmas.

The ethical aspects of the encounter between the health care professional and the patient are at the centre of care ethics. This encounter is always asymmetrical. How can we make it a respectful encounter, given that professionals have more knowledge and patients are put in a dependent and exposed position? As individual patients in health care, we are not on home ground, while the health care professional is in a familiar work environment and practices their profession. This asymmetry places great ethical demands on how the meeting between patient and professional takes place. It is precisely in this encounter that the dilemmas of health care ethics arise. However, as a care ethics researcher, I also ask questions about how health care is organised and whether that enables good and ethically acceptable encounters.

Those who organise the health care system and the people providing care need to know something about what is best for the patient. To be able to offer concrete guidance on how to educate, budget, plan and perform care, the ethical dilemmas that arise in health care encounters need to be examined in a structured way. Care ethics offers both theoretical and empirical tools to do just that. The theoretical framework builds in part on traditional principle-based ethics, and in part on the ethics of care. In this tradition, nursing and care are seen as both value and practice. The practice includes moral values, but also gives rise to norms that can guide moral action by rejecting acts of violence and dominance towards other human beings. The ethics of care looks to the needs of the “concrete other.” It considers us as individuals in mutually dependent relationships with one another. It also ascribes emotions a moral value. But not just any emotions; mainly those that are connected to nursing and caring for others, for example compassion and empathy.

Over the years, the care ethics group at the Centre for Research Ethics and Bioethics (CRB) have worked with several different questions. Mona Petterson wrote her PhD thesis on how doctors and nurses view do-not-resuscitate orders. Amal Matar’s thesis covered ethical issues in relation to genetic screening before pregnancy, also known as preconception genetic screening. We have also worked with caregivers’ experiences of health care prioritization, how parents and children view vaccination ethics, and equal access to health care. Our approach to care ethics is rooted in clinical practice and our studies are mainly informed by empirical ethics, where ethical and philosophical reasoning is related to qualitative and quantitative empirical research. Our goal is to contribute concrete clinical guidance on how to manage the ethical dilemmas that health care is faced with. Given the fact that we are all born, and live and die, it is also a given that we all will require care at one point or another. In order to enable health care policy makers and administrators to make decisions that benefit patients, talking about ethics in terms of medical risk versus benefit is not enough. As patients, we are human beings in an asymmetrical relationship where we are dependent on the person offering us care. The ethical dilemmas that arise from that relationship matter for how we perceive the treatment and care we receive. They also affect the extent to which we can exercise our autonomy.

Anna T. Höglund

Written by…

Anna T. Höglund, who is Professor of Care Ethics and Gender Studies at Uppsala University’s Centre for Research Ethics & Bioethics.

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In dialogue with patients

New dissertation on patient preferences in medical approvals

During the spring, several doctoral students at CRB successfully defended their dissertations. Karin Schölin Bywall defended her dissertation on May 12, 2021. The dissertation, like the two previous ones, reflects a trend in bioethics from theoretical investigations to empirical studies of people’s perceptions of bioethical issues.

An innovative approach in Karin Schölin Bywall’s dissertation is that she identifies a specific area of ​​application where the preference studies that are increasingly used in bioethics can be particularly beneficial. It is about patients’ influence on the process of medical approval. Patients already have such an influence, but their views are obtained somewhat informally, from a small number of invited patients. Karin Schölin Bywall explores the possibility of strengthening patients’ influence scientifically. Preference studies can give decision-makers an empirically more well-founded understanding of what patients actually prefer when they weigh efficacy against side effects and other drug properties.

If you want to know more about the possibility of using preference studies to scientifically strengthen patients’ influence in medical approvals, read Karin Schölin Bywall’s dissertation: Getting a Say: Bringing patients’ views on benefit-risk into medical approvals.

If you want a concise summary of the dissertation, read Anna Holm’s news item on our website: Bringing patients’ views into medical approvals.

Pär Segerdahl

Written by…

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

Schölin Bywall, K. (2021) Getting a Say: Bringing patients’ views on benefit-risk into medical approvals. [Dissertation]. Uppsala University.

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We want solid foundations

Two new dissertations!

Two of our doctoral students at CRB recently successfully defended their dissertations. Both dissertations reflect a trend in bioethics from purely theoretical studies to also include empirical studies of people’s perceptions of bioethical issues.

Åsa Grauman’s dissertation explores the public’s view of risk information about cardiovascular disease. The risk of cardiovascular disease depends on many factors, both lifestyle and heredity influence the risk. Many find it difficult to understand such risk information and many underestimate their risk, while others worry unnecessarily. For risk information to make sense to people, it must be designed so that recipients can benefit from it in practice. That requires knowing more about their perspective on risk, how health information affects them, and what they think is important and unimportant when it comes to risk information about cardiovascular disease. One of Åsa Grauman’s conclusions from her studies of these issues is that people often estimate their risk on the basis of self-assessed health and family history. As this can lead to the risk being underestimated, she argues that health examinations are important which can nuance individuals’ risk assessments and draw their attention to risk factors that they themselves can influence.

If you want more conclusions and see the studies behind them, read Åsa Grauman’s dissertation: The publics’ perspective on cardiovascular risk information: Implications for practice.

Mirko Ancillotti’s dissertation explores the Swedish public’s view of antibiotic resistance and our responsibility to reduce its prevalence. The rise of antibiotic-resistant bacteria is one of the major global threats to public health. The increase is related to our often careless overuse of antibiotics in society. The problem needs to be addressed both nationally and internationally, both collectively and individually. Mirko Ancillotti focuses on our individual responsibility for antibiotic resistance. He examines how such a responsibility can be supported through more effective health communication and improved institutional conditions that can help people to use antibiotics more judiciously. Such support requires knowledge of the public’s beliefs, values ​​and preferences regarding antibiotics, which may affect their willingness and ability to take responsibility for their own use of antibiotics. One of the studies in the dissertation indicates that people are prepared to make significant sacrifices to reduce their contribution to antibiotic resistance.

If you want to know more about the Swedish public’s view of antibiotic resistance and the possibility of supporting judicious behaviour, read Mirko Ancillotti’s dissertation: Antibiotic Resistance: A Multimethod Investigation of Individual Responsibility and Behaviour.

Pär Segerdahl

Written by…

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

Åsa Grauman. 2021. The publics’ perspective on cardiovascular risk information: Implications for practice. Uppsala: Acta Universitatis Upsaliensis.

Mirko Ancillotti. 2021. Antibiotic Resistance: A Multimethod Investigation of Individual Responsibility and Behaviour. Uppsala: Acta Universitatis Upsaliensis.

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Ethics needs empirical input

We do not know if cancer patients receive better treatment by participating in clinical trials

How do we know? That is the recurring question in a scientific culture. Do we have support for what we claim or is it just an opinion? Is there evidence?

The development of new cancer treatments provides many examples of the recurring question. The pharmaceutical company would like to be able to claim that the new treatment is more effective than existing alternatives and that the dosages recommended give good effect without excessive side effects. However, first we must answer the question, How do we know?

It is not enough to ask the question just once. We must repeat the question for every aspect of the treatment. Any claim on efficacy, side effects and dosages must be supported by answers to the question. How do we arrive at these answers? How do we check that it is not mere opinions? Through clinical trials conducted with cancer patients who agree to be research subjects.

A new research ethical study shows, however, that an ethically sensitive claim is often repeated in cancer research, without first asking and answering the question “How do we know?” in a satisfying way. Which claim? It is the claim that cancer patients are better off as participants in clinical trials than as regular patients who receive standard treatment. The claim is ethically sensitive because it can motivate patients to participate in trials.

In a large interview study, the authors first investigated whether the claim occurs among physicians and nurses working with clinical trials. Then, through a systematic literature review, they examined whether there is scientific evidence supporting the claim. The startling answer to the questions is: Yes, the claim is common. No, the claim lacks support.

Patients recruited for clinical trials are thus at risk of being misled by the common but unfounded opinion that research participation means better treatment. Of course, it is conceivable that patients who participate in trials will at least get indirect positive effects through increased attention: better follow-ups, more sample taking, closer contacts with physicians and nurses. However, indirect positive effects on outcomes should have been visible in the literature study. Regarding subjective effects, it is pointed out in the article that such effects will vary with the patients’ conditions and preferences. It is not always positive for a very sick patient to provide the many samples that research needs. In general, then, we cannot claim that research participation has indirect positive effects.

This is how the authors, including Tove Godskesen and Stefan Eriksson at CRB, reason in the clearly written article in BMC Cancer: Are cancer patients better off if they participate in clinical trials? A mixed methods study. Tove Godskesen was the leader of the study.

An ethically important conclusion drawn in the article is the following. If we suggest to patients who consent to participation in trials that research means better treatment, then they receive misleading information. Instead, altruistic research participation should be emphasized. By participating in studies, patients support new knowledge that can enable better cancer treatments for future patients.

The article examines a case where the question “How do we know?” has the answer, “We do not know, it is just an opinion.” Then at least we know that we do not know! How do we know? Through the studies presented in the article – read it!

Pär Segerdahl

Written by…

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

Zandra Engelbak Nielsen, Stefan Eriksson, Laurine Bente Schram Harsløf, Suzanne Petri, Gert Helgesson, Margrete Mangset and Tove E. Godskesen. Are cancer patients better off if they participate in clinical trials? A mixed methods study. BMC Cancer 20, 401 (2020). https://doi.org/10.1186/s12885-020-06916-z

We have a clinical perspective

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Clinical cancer trials convey a culture of hope

Activities that we may want to keep apart often overlap. An example is cancer research and care. Clinical cancer centers often conduct research and recruit patients as research participants. Such research is important if we want to offer future patients better cancer treatments. However, does this also apply to patients participating in studies? Are they offered better care as research participants?

Together with five co-authors, Tove Godskesen recently published an interview study with clinical physicians carrying out clinical cancer trials in Sweden, Denmark and Finland. The questions were about what ethical challenges the physicians perceived in the care of patients who participate in clinical trials. Does the overlap of care and research create ethical challenges? Although several physicians mentioned challenges, there were tendencies to downplay ethical difficulties and to associate the overlap between research and care with care benefit.

Tove Godskesen sees indications of a culture of hope in clinical cancer trials, where patients and physicians reinforce the image of research participation as an opportunity to access the latest therapy. However, uncertain patients can challenge the picture by asking the physician to affirm that the experimental treatment is as good as the standard treatment. You do not know that. That is why you are doing research!

The authors do not make any claims about whether a culture of hope in clinical cancer trials is good or not. However, they believe that the culture needs to become visible and discussed openly. So that the ethical challenges when care and research overlap do not disappear from sight.

The culture of hope has several aspects that you can read more about in the article. For example, the attitude that it is better to avoid giving patients bad news.

Pär Segerdahl

Written by…

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

Tove E Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset and Zandra E Nielsen. The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views. Clinical Ethics. First Published December 30, 2019. https://doi.org/10.1177/1477750919897379

We have a clinical perspective

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People want to be able to influence the risk

Pär SegerdahlWe need to do research to know what people think is important in genetic risk information. What they prefer to know. But how do we find out? One way is to ask people to answer questionnaires.

One problem with questionnaires is that they ask one thing at a time. Do you prefer a hotel room with a sea view when you are on vacation? You probably answer yes. But do you prefer the sea view even if the room is above the disco, or costs 500 EUR per night? If you only ask one thing at a time, then it is difficult to know how different factors interact, how important they are relative to each other.

One way to get past this limitation is to ask people to choose between two alternatives, where the alternatives have several different attributes.

  • Hotel room A: (1) View: sea (2) Price: 200 EUR per night (3) Distance to the center: 30 minutes walk (4) Sound level: high.
  • Hotel room B: (1) View: parking (2) Price: 100 EUR per night (3) Distance to the center: 40 minutes bus ride (4) Sound level: low.

Which room do you choose, A or B? The choice tasks are repeated while the attributes are varied systematically. In this way, one can learn more about what people prefer, than through a regular questionnaire. One can see how different attributes interact and which attributes are more important than others are. One can also calculate how much more important an attribute is over another.

The same kind of study can be done about genetic risk information instead of hotel rooms. Jennifer Viberg Johansson at CRB recently did such a study. Four attributes of the risk information were varied in the choice tasks:

  • (1) Type of disease (2) Probability of developing disease (3) Preventive opportunities (4) Effectiveness of the preventive measure.

Which of the attributes was most important to the people who participated in the study? How much more important was it?

It turned out that the most important attribute was the effectiveness of the preventive measure. If the information contained an effective preventive measure, the respondents clearly preferred that information. The effectiveness of the preventive measure was twice as important to know, compared to the probability of developing the disease.

Apparently, it is important for people to be able to influence the risk. One conclusion in the study is that when risk information says that there is an effective preventive measure, then risk communication can focus more on the preventive measure than on the probability of developing disease.

The method is called, “Discrete Choice Experiment.” If you want to look more closely at the method and get more results, read Jennifer Viberg Johansson’s article in Genetics in Medicine.

Pär Segerdahl

Viberg Johansson, J., Langenskiöld, S., Segerdahl, P., Hansson, M.G., Hösterey Ugander, U., Gummesson, A., Veldwijk, J. Research participants’ preferences for receiving genetic risk information: a discrete choice experiment. Genetics in Medicine, 2019

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