The Ethics Blog

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

Tag: Discrete Choice Experiments (DCE)

Empirical ethics nuances ethical issues

crowd
17 October, 2023 / / 1 Comment

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

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Illness prevention needs to be adapted to people’s illness perceptions

1 March, 2022 / / 1 Comment

Several factors increase the risk of cardiovascular disease. Many of these we can influence ourselves through changes in lifestyle or preventive drug treatment. But people’s attitudes to prevention vary with their perceptions of cardiovascular disease. Health communication to support preventive measures therefore needs to take into account people’s illness perceptions.

Åsa Grauman and three colleagues conducted an online survey with 423 randomly selected Swedes aged 40 to 70 years. Participants were asked to answer questions about themselves and about how they view cardiovascular disease. They then participated in an experiment designed to capture how they weighted their preferences regarding health check results.

The results showed a wide variety of perceptions about cardiovascular disease. Women more often cited stress as their most important risk factor while men more often cited overweight and obesity. An interesting result is that people who stated that they smoked, had hypertension, were overweight or lived sedentary, tended to downplay that factor as less risky for cardiovascular disease. On the other hand, people who stated that they experienced stress had a tendency to emphasize stress as a high risk of cardiovascular disease. People who reported family history as a personal risk of illness showed a greater reluctance to participate in health examinations.

Regarding preferences about health check results, it was found that the participants preferred to have their results presented in everyday words and with an overall assessment (rather than, for example, in numbers). They also preferred to get the results in a letter (rather than by logging in to a website) that included lifestyle recommendations, and they preferred 30 minutes of consultation (over no or only 15 minutes of consultation).

It is important to reach out with the message that the risk of cardiovascular disease can be affected by lifestyle changes, and that health checks can identify risk factors in people who are otherwise asymptomatic. Especially people with a family history of cardiovascular disease, who in the study were more reluctant to undergo health examinations, may need to be aware of this.

To reach out with the message, it needs to be adapted to how people perceive cardiovascular disease, and we need to become better at supporting correct perceptions, the authors conclude. I have mentioned only a small selection of results from the study. If you want to see the richness of results, read the article: Public perceptions of myocardial infarction: Do illness perceptions predict preferences for health check results.

Pär Segerdahl

Written by…

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

Åsa Grauman, Jennifer Viberg Johansson, Marie Falahee, Jorien Veldwijk. 2022, Public perceptions of myocardial infarction: Do illness perceptions predict preferences for health check results. Preventive Medicine Reports 26, https://doi.org/10.1016/j.pmedr.2021.101683

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Exploring preferences

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New dissertation on patient preferences in medical approvals

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25 May, 2021 / / 1 Comment

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

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Research for responsible governance of our health data

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15 December, 2020 / / 1 Comment

Do you use your smartphone to collect and analyse your performance at the gym? This is one example of how new health-related technologies are being integrated into our lives. This development leads to a growing need to collect, use and share health data electronically. Healthcare, medical research, as well as technological and pharmaceutical companies are increasingly dependent on collecting and sharing electronic health data, to develop healthcare and new medical and technical products.

This trend towards more and more sharing of personal health information raises several privacy issues. Previous studies suggest that people are willing to share their health information if the overall purpose is improved health. However, they are less willing to share their information with commercial enterprises and insurance companies, whose purposes may be unclear or do not meet people’s expectations. It is therefore important to investigate how individuals’ perceptions and attitudes change depending on the context in which their health data is used, what type of information is collected and which control mechanisms are in place to govern data sharing. In addition, there is a difference between what people say is important and what is revealed in their actual behaviour. In surveys, individuals often indicate that they value their personal information. At the same time, individuals share their personal information online despite little or no benefit to them or society.

Do you recognise yourself, do you just click on the “I agree” button when installing a health app that you want to use? This behaviour may at first glance suggest that people do not value their personal information very much. Is that a correct conclusion? Previous studies may not have taken into account the complexity of decisions about integrity where context-specific factors play a major role. For example, people may value sharing health data via a physical activity app on the phone differently. We have therefore chosen to conduct a study that uses a sophisticated multi-method approach that takes context-specific factors into account. It is an advantage in cybersecurity and privacy research, we believe, to combine qualitative methods with a quantitative stated preference method, such a discrete choice experiment (DCE). Such a mixed method approach can contribute to ethically improved practices and governance mechanisms in the digital world, where people’s health data are shared for multiple purposes.

You can read more about our research if you visit the website of our research team. Currently, we are analysing survey data from 2,000 participants from Sweden, Norway, Iceland, and the UK. The research group has expertise in law, philosophy, ethics and social sciences. On this broad basis, we  explore people’s expectations and preferences, while identifying possible gaps within the ethical and legal frameworks. In this way, we want to contribute to making the growing use and sharing of electronic health data ethically informed, socially acceptable and in line with people’s expectations.  

Written by…

Jennifer Viberg Johansson, Postdoc researcher at the Centre for Research Ethics & Bioethics, working in the projects Governance of health data in cyberspace and PREFER.

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Part of international collaborations

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People care about antibiotic resistance

piller
8 December, 2020 / / 2 Comments

The rise of antibiotic-resistant bacteria is a global threat to public health. In Europe alone, antibiotic resistance (AR) causes around 33,000 deaths each year and burdens healthcare costs by around € 1.5 billion. What then causes AR? Mainly our misuse and overuse of antibiotics. Therefore, in order to reduce AR, we must reduce the use of antibiotics.

Several factors drive the prescribing of antibiotics. Patients can contribute to increased prescriptions by expecting antibiotics when they visit the physician. Physicians, in turn, can contribute by assuming that their patients expect antibiotics.

In an article in the International Journal of Antimicrobial Agents, Mirko Ancillotti from CRB presents what might be the first study of its kind on the public’s attitude to AR when choosing between antibiotic treatments. In a so-called Discrete Choice Experiment, participants from the Swedish public were asked to choose between two treatments. The choice situation was repeated several times while five attributes of the treatments varied: (1) the treatment’s contribution to AR, (2) cost, (3) risk of side effects, (4) risk of failed treatment effect, and (5) treatment duration. In this way, one got an idea of ​​which attributes drive the use of antibiotics. One also got an idea of ​​how much people care about AR when choosing antibiotics, relative to other attributes of the treatments.

It turned out that all five attributes influenced the participants’ choice of treatment. It also turned out that for the majority, AR was the most important attribute. People thus care about AR and are willing to pay more to get a treatment that causes less antibiotic resistance. (Note that participants were informed that antibiotic resistance is a collective threat rather than a problem for the individual.)

Because people care about antibiotic resistance when given the opportunity to consider it, Mirko Ancillotti suggests that a path to reducing antibiotic use may be better information in healthcare and other contexts, emphasizing our individual responsibility for the collective threat. People who understand their responsibility for AR may be less pushy when they see a physician. This can also influence physicians to change their assumptions about patients’ expectations regarding antibiotics.

Pär Segerdahl

Written by…

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

M. Ancillotti, S. Eriksson, D.I. Andersson, T. Godskesen, J. Nihlén Fahlquist, J. Veldwijk, Preferences regarding antibiotic treatment and the role of antibiotic resistance: A discrete choice experiment, International Journal of Antimicrobial Agents, Volume 56, Issue 6, 2020. doi.org/10.1016/j.ijantimicag.2020.106198

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Exploring preferences

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People want to be able to influence the risk

27 May, 2019 / / 0 Comments

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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ethics needs empirical input - the ethics blog

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