People want to be able to influence the risk

May 27, 2019

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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Neuroethical reflection in the Human Brain Project

May 15, 2019

Arleen SallesThe emergence of several national level brain initiatives and the priority given to neuroscientific research make it important to examine the values underpinning the research, and to address the ethical, social, legal, philosophical, and regulatory issues that it raises.

Neuroscientific insights allow us to understand more about the human brain: about its dynamic nature and about its disorders. These insights also provide the basis for potentially manipulating the brain through neurotechnology and pharmacotherapy. Research in neuroscience thus raises multiple concerns: From questions about the ethical significance of natural and engineered neural circuitry, to the issue of how a biological model or a neuroscientific account of brain disease might impact individuals, communities, and societies at large. From how to protect human brain data to how to determine and guard against possible misuses of neuroscientific findings.

Furthermore, the development and applications of neuro-technology to alleviate symptoms or even enhance the human brain raise further concerns, such as their potential impact on the personality, agency, and autonomy of some users. Indeed, some empirical findings appear to even challenge long held conceptions about who we are, the capacity to choose freely, consciousness, and moral responsibility.

Neuroethics is the field of study devoted to examining these critical issues. Unfortunately, it has sometimes been reduced to a subfield of applied ethics understood as a merely procedural approach. However, in our understanding, neuroethics is methodologically much richer. It is concerned not just with using ethical theory to address normative issues about right and wrong, but notably with providing needed conceptual clarification of the relevant neuroscientific and philosophical notions. Only by having conceptual clarity about the challenges presented will we be able to address and adequately manage them.

So understood, neuroethics plays a key role in the Human Brain Project (HBP). The HBP is a European Community Flagship Project of Information and Computing Technologies (ICT). It proposes that to achieve a fuller understanding of the brain, it is necessary to integrate the massive volumes of both already available data and new data coming from labs around the world. Expected outcomes include the creation and operation of an ICT infrastructure for neuroscience and brain related research in medicine and computing. The goal is to achieve a multilevel understanding of the brain (from genes to cognition), its diseases and the effects of drugs (allowing early diagnoses and personalised treatments), and to capture the brain’s computational capabilities.

The HBP is funded by the European Commission in the framework of the EU’s Horizon 2020 research-funding programme. The programme promotes responsible research and innovation (RRI). RRI is generally understood as an interactive process that engages social actors, researchers, and innovators who must be mutually responsive and work towards the ethical permissibility of the relevant research and its products. The goal is to ensure that scientific progress and innovation are responsible and sustainable: that they increase individual and societal flourishing and maximize the common good.

To develop, broaden, and enhance RRI within the project, the HBP established the Ethics and Society subproject. Ethics and Society  is structured around a number of RRI activities such as foresight analysis (to identify at an early stage ethical and social concerns), citizens’ engagement (to promote involvement with different points of view and to strengthen public dialogue), and ethics support (to carry out research in applied ethics and to develop principles and mechanisms that ensure that ethical issues raised by research subprojects are communicated and managed and that HBP researchers comply with ethical codes and legal norms).

Neuroethical reflection plays a key role in this integration of social, scientific, and ethical inquiry. Notably, in the HBP such reflection includes conceptual and philosophical analysis. Insofar as it does, neuroethics aims to offer more than assistance to neuroscientists and social scientists in identifying the social, political, and cultural components of the research. Via conceptual analysis, neuroethics attempts to open a productive space within the HBP for examining the relevant issues, carrying out self-critical analysis, and providing the necessary background to examine potential impacts and issues raised. Neuroethical reflection in the HBP does not exclusively focus on ethical applications and normative guidance. Rather, it takes as a starting point the view that the full range of issues raised by neuroscience cannot be adequately dealt with without also focusing on the construction of knowledge, the meaning of the relevant notions, and the legitimacy of the various interpretations of relevant scientific findings.

At present, the importance of neuroethics is not in question. It is a key concern of the International Brain Initiative, and the different international brain projects are trying to integrate neuroethics into their research in different ways. What continues to be unique to neuroethics in the HBP, however, is its commitment to the idea that making progress in addressing the host of ethical, social, legal, regulatory and philosophical issues raised by brain research to a great extent depends on a conceptual neuroethical approach. It enables constructive critical alertness and a thought-out methodology that can achieve both substantial scientific ground and conceptual clarity.

If you want to read more, see below a list of publications on which this post is based.

Arleen Salles

Delegates eaGNS. Neuroethics Questions to Guide Ethical Research in the International Brain Initiatives. Neuron. 2018.

Evers K, Salles A, Farisco M. Theoretical Framing for Neuroethics: The Need for a Conceptual Aproach. In: Racine E, Aspler, J., editor. Debates About Neuroethics: Springer; 2017.

Salles A, Evers K. Social Neuroscience and Neuroethics: A Fruitful Synergy. In: Ibanez A, Sedeno, L., Garcia, A., editor. Social Neuroscience and Social Science: The Missing Link: Springer; 2017. p. 531-46.

Farisco M, Salles A, Evers K. Neuroethics: A Conceptual Approach. Camb Q Healthc Ethics. 2018;27(4):717-27.

Salles A, Evers K, Farisco M. Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project. Neuroethics. 2018.

Salles A, Bjaalie JG, Evers K, Farisco M, Fothergill BT, Guerrero M, et al. The Human Brain Project: Responsible Brain Research for the Benefit of Society. Neuron. 2019;101(3):380-4.


How about personally optimized treatment?

May 6, 2019

Pär SegerdahlIt is well known that patients who are asked to participate in cancer trials are tempted by the therapeutic misconception. They believe they are offered a newer and better treatment, when in fact it is about research into an untested treatment. When researchers use genetic tests to develop personalized oncology, even more misconceptions can arise. I will soon explain. But first, what is personalized cancer treatment? Here is an example.

Patients whose tumor is to be operated may undergo preparatory radiation or chemotherapy. Since the preparatory therapy has severe side effects, one wants to avoid giving it to patients whose tumors do not respond to it. The challenge is to distinguish patients who respond to treatment from patients who do not. This is to be accomplished through, among other things, genetic tests on the tumor cells. If this works, you can develop personalized cancer treatment. Patients with the “right” tumor cell genetics receive the preparatory therapy, while patients who, according to the genetic tests, only get the side effects, with no effect on tumor growth, do not receive the therapy.

What are the misconceptions that can arise in patients who are asked to participate in research on personalized cancer treatment? Here are some examples.

Patients who are told that the researchers will do genetic tests can feel a genetic responsibility to participate, considering their children and grandchildren. They believe the test results may be relevant to close relatives, who may have the same disease genes. However, the tests are done on mutated tumor cells and therefore say nothing about inherited cancer risk. A sense of genetic responsibility can thus be triggered by the word “genetics” and create a genetic misconception of research in personalized oncology.

Other misconceptions have to do with the positive language used to describe personalized medicine. One talks about personally “optimized” treatments, about “tailored” treatments, about treatments that are adapted “to the individual.” This language use is not intended to mislead, but it is easy to see how words such as “optimization” can cause patients to believe that research participation means special treatment benefit.

The biggest challenge is perhaps to explain the research purpose behind the positive language. The aim is to be able in the future to distinguish between patients, to “stratify” them, as it less positively is called. Personally optimized care actually means that some patients do not receive certain treatments. This is, of course, reasonable if genetic tests can show that they have no benefit from the treatments but only get the side effects. However, what do cancer patients themselves say about stratified cancer treatment, where some patients are identified as non-responders and therefore are not offered the same treatment as other patients? Finally, do participants understand that “tailored treatment” is a future goal of the study and not something they are offered to try?

Communication with patients recruited for studies in personalized oncology faces many challenges, as patients are tempted by even more misconceptions than just the well-known therapeutic misconception.

Do you want to know more? Read the German study that inspired this blog post.

Pär Segerdahl

Perry, J., Wöhlke, S., Heßling, A.C., Schicktanz, S. 2017. Why take part in personalised cancer research? Patients’ genetic misconception, genetic responsibility and incomprehension of stratification—an empirical‐ethical examination. Eur J Cancer Care. https://doi.org/10.1111/ecc.12563

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