The Ethics Blog

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

Year: 2017 (Page 1 of 3)

Big questions do not have small answers

20 December, 2017 / / 0 Comments

Pär SegerdahlSome questions we perceive are “bigger” than other questions. What does it mean to live, to be, rather than not to be? When does life begin and when does it end? What is a human being? Does life have a meaning or do we endow it with mere façades of meaning?

We do not expect definitive answers to these questions, except for a joke. They are wonderings that accompany us and occasionally confront us. We may then notice that we have an attitude to them. Perhaps a different attitude today than ten years ago. The attitude is not a definitive answer, not a doctrine about reality that dry investigations could support or falsify.

Bioethics sometimes comes close to these big questions, namely, when scientists study what we can associate with the mystery of living, being, existing. An example is embryonic stem cell research, where scientists harvest stem cells from human embryos. Even proponents of such research may experience that there is something sensitive about the embryo. I would not exist, we would not live, you would not be, unless once upon a time there was an embryo…

The embryo is thus easily associated with the big questions of life. This implies that bioethics has to handle them. How does it approach them?

Usually by seeking specific answers to the questions. Like super-smart lawyers who finally get the hang of these age-old, obscure issues and straighten them out for us.

Do you know, for example, when a human being begins to exist? Two bioethicists combined biological facts with philosophical analysis to provide a definitive answer: A human being begins to exist sixteen days after fertilization.

Incorrect, other bioethicists objected. They too combined biological facts with philosophical analysis, but provided another definitive answer: A human being begins to exist already with fertilization. The only exception is twins. They begin to exist later, but much earlier than sixteen days after fertilization.

The bioethicists I am talking about are proud of their intellectual capacity to provide specific answers to such a big question about human existence. However, if big questions do not have small answers, except for a joke, do they not deliver the answer at the cost of losing the question?

The question I am currently working on is how bioethics can avoid losing the questions we perceive are “bigger” than other questions.

Pär Segerdahl

Smith, B. & Brogaard, B. 2003. Sixteen days. Journal of Medicine and Philosophy 28: 45-78.

Damschen, G., Gómez-Lobo, A. & Schönecker, D. 2006. Sixteen days? A reply to B. Smith and B. Brogaard on the beginning of human individuals. Journal of Medicine and Philosophy 31: 165-175.

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Hoping when there is no hope

27 November, 2017 / / 0 Comments

Pär SegerdahlPatients participating in phase I oncology trials have terminal cancer and are near the end of life. Participating in research cannot cure them or even extend their lives. Not only because they have terminal cancer, but also because in phase I trials one tests the safety profile of the treatment, not effectiveness against cancer.

Nevertheless, many patients state that hope is an important reason for them to participate in phase I oncology trials. This is worrying from an ethical perspective. Do they understand what they agree to when they enroll as research participants? Have they been properly informed?

In an article in the Journal of Oncology Practice, Tove Godskesen discusses the issue, together with Ulrik Kihlbom. They argue that it is a norm in cancer care to provide hope to patients, and that this norm may support a tendency in personnel who recruit research participants to not always discourage hope, but rather reinforce it.

Since supporting hope in cancer patients is humanly important, it is not entirely easy to find a solution to the problem. Godskesen and Kihlbom proceed cautiously by distinguishing three kinds of hope that cancer patients may have concerning their participation in phase I trials.

The first is independent hope: patients hope for something that is independent of cure, such as receiving more attention by participating in research. The second kind of hope is realistic hope: patients understand that there is really no hope of cure or prolonged life, but they still hope against hope. The third kind is unrealistic hope: patients misunderstand the situation and think they are offered a treatment that doctors/researchers believe can help.

It is reasonable to support independent and realistic hope in phase I trials, according to Godskesen and Kihlbom. However, unrealistic hope is ethically worrying. It should be discouraged when patients enroll as research participants.

Discouraging unrealistic hope requires awareness of the norm to provide hope to cancer patients. The authors describe how a hopeful attitude is activated simultaneously with the cancer diagnosis. Words like treatment, hope and cure are immediately emphasized in the conversations with patients. The risk is that these words are used in the same hopeful spirit also when participation in a phase I trial is discussed.

Another problem in this context is that patients participating in phase I trials rarely receive palliative care, which would be reasonable given their terminal cancer. This may create the false appearance that research participation means being offered a new treatment. Perhaps the norm to provide hope creates this reluctance to mention palliative care. Staff is afraid that they may discourage hope. That fear is problematic, the authors claim.

What measures do Godskesen and Kihlbom propose? First of all, we need to put extra high demands on the information to participants in phase I oncology trials so that this vulnerable patient group is not exploited. Secondly, the information should contain palliative options. Thirdly, patients should receive palliative counseling throughout the trial.

Integrating research participation with palliative care reduces the risk of encouraging unrealistic hope in this patient group. The fact that trial participation is research and not treatment becomes clearer.

Pär Segerdahl

Godskesen T. and Kihlbom, U. (2017), “I have a lot of pills in my bag, you know”: institutional norms in the provision of hope in phase I clinical cancer trials. Journal of Oncology Practice 13(10): 679-682. DOI: 10.1200/JOP.2017.021832

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Stop talking about predatory journals?

22 November, 2017 / / 0 Comments

Pär SegerdahlAlmost no researcher escapes the incessant emails from journals that offer to publish one’s research. A desire for gain, however, lies behind it all. Although it is not mentioned in the emails, the author typically is charged, and peer review is more or less a façade. Just submit your text and pay – they publish!

The unpleasant phenomenon is standardly referred to as predatory publishing. Worried researchers, publishers, and librarians who want to warn their users, they all talk about predatory journals. These journals pretend to be scientific, but they hardly are.

Lately, however, some researchers have begun to question the vocabulary of predation. Partly because there are scholars who themselves use these journals to promote their careers, and who therefore do not fall prey to them. Partly because even established journals sometimes use the methods of predatory journals, such as incessant spamming and high publishing fees. This is problematic, but does it make these journals predatory?

Another problem pointed out is the risk that we overreact and suspect also promising trends in academic publishing, such as publishing open access. Here too, authors often pay a fee, but the purpose is commendable: making scientific publications openly available on the internet, without payment barriers.

So, how should we talk, if we want to avoid talking about predatory journals?

Stefan Eriksson and Gert Helgesson annually update a blacklist of predatory journals in medical ethics, bioethics and research ethics. They have also published articles on the phenomenon. In a recent opinion piece in Learned Publishing, however, they propose talking instead about two types of problematic journals: deceptive and low-quality journals.

Deceptive journals actively mislead authors, readers and institutions by providing false information about peer review, editorial board, impact factor, publishing costs, and more. Deceptive journals should be counteracted through legal action.

Low-quality journals are not guilty of possibly illegal actions. They are just bad, considered as scientific journals. In addition to poor scientific quality, they can be recognized in several ways. For example, they may publish articles in a ridiculously broad field (e.g., medicine and non-medicine). They may send inquiries to researchers in the “wrong” field. They may lack strategies to deal with research misconduct. And so on.

Stefan Eriksson and Gert Helgesson emphasize that the distinction between deceptive and low-quality journals can help us more clearly see what we are dealing with. And act accordingly. Some journals are associated with actions that can be illegal. Other journals are rather characterized by poor quality.

Time to drop the colorful vocabulary of predation?

Pär Segerdahl

Eriksson, S. and Helgesson, G. (2017), Time to stop talking about ‘predatory journals’. Learned Publishing. doi:10.1002/leap.1135

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Global data sharing, national oversight bodies

8 November, 2017 / / 0 Comments

Pär SegerdahlScience has an international character and global research collaboration is common. For medical research, this means that health data and biological samples linked to people in one nation often are transferred to researchers in other nations.

At the same time, the development of new information and communication technology increases the importance of people’s data protection rights. To provide satisfying data protection in the new internet world, data protection regulations are tightening, especially within the EU.

In an article in Health and Technology, lawyer Jane Reichel discusses challenges that this development poses for biomedical research.

I am not a lawyer, but if I understand Reichel right, legislation can accompany personal data across national borders. For example, the EU requires that the foreign receiver of European data subjects’ personal data will handle the data in accordance with EU legislation – even if the receiver is a research group in the United States or Japan.

The fact that one nation may need to follow a foreign nation’s legislation not only challenges concepts of sovereignty and territoriality. It also challenges the responsibility of research ethics committees. These committees operate administratively at national level. Now it seems they might also need to monitor foreign rights and global standards. Do these national bodies have the expertise and authority for such an international task?

Read the article about these exciting and unexpected legal issues!

Pär Segerdahl

Reichel, J. Health Technol. (2017). https://doi.org/10.1007/s12553-017-0182-6

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Ethics, human rights and responsible innovation

31 October, 2017 / / 7 Comments

josepine-fernow2It is difficult to predict the consequences of developing and using new technologies. We interact with smart devices and intelligent software on an almost daily basis. Some of us use prosthetics and implants to go about our business and most of us will likely live to see self-driving cars. In the meantime, Swedish research shows that petting robot cats looks promising in the care of patients with dementia. Genetic tests are cheaper than ever, and available to both patients and consumers. If you spit in a tube and mail it to a US company, they will tell you where your ancestors are from. Who knows? You could be part sub Saharan African, and part Scandinavian at the same time, and (likely) still be you.

Technologies, new and old, have both ethical and human rights impact. Today, we are closer to scenarios we only pictured in science fiction a few decades ago. Technology develops fast and it is difficult to predict what is on the horizon. The legislation, regulation and ethical guidance we have today was developed for a different future. Policy makers struggle to assess the ethical, legal and human rights impact of new and emerging technologies. These frameworks are challenged when a country like Saudi Arabia, criticized for not giving equal rights to women, offers a robot honorary citizenship. This autumn marks the start of a research initiative that will look at some of these questions. A group of researchers from Europe, Asia, Africa and the Americas join forces to help improve the ethical and legal frameworks we have today.

The SIENNA project (short for Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact) will deliver proposals for professional ethics codes, guidelines for research ethics committees and better regulation in three areas: human genetics and genomics, human enhancement, and artificial intelligence & robotics. The proposals will build on input from stakeholders, experts and citizens. SIENNA will also look at some of the more philosophical questions these technologies raise: Where do we draw the line between health and illness, normality and abnormality? Can we expect intelligent software to be moral? Do we accept giving up some of our privacy to screen our genome for genetic disorders? And if giving up some of our personal liberty is the price we have to pay to interact with machines, are we willing to pay it?

 The project is co-ordinated by the University of Twente. Uppsala University’s Centre for Research Ethics & Bioethics contributes expertise on the ethical, legal and social issues of genetics and genomics, and experience of communicating European research. Visit the SIENNA website at www.sienna-project.eu to find out more about the project and our partners!

Josepine Fernow

The SIENNA project – Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact – has received just under € 4 million for a 3,5 year project under the European Union’s H2020 research and innovation programme, grant agreement No 741716.

Disclaimer: This text and its contents reflects only SIENNA’s view. The Commission is not responsible for any use that may be made of the information it contains.

SIENNA project

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Beyond awareness: the need for a more comprehensive ethics of disorders of consciousness

23 October, 2017 / / 0 Comments

Michele FariscoDisorders of consciousness like coma, unresponsive wakefulness syndrome, and what is known as minimally conscious state, are among the most challenging issues in current ethical debates. Ethical analyses of these states usually focus on the ‘residual’ awareness that these patients might still have. Such awareness is taken to have bearing on other factors that are usually considered ethically central, like the patients’ well-being.

Yet, when we take a look at recent scientific investigations of mental activity it appears that things are much more complicated than usually thought. Cognitive science provides empirical evidence that the unconscious brain is able to perform almost all the activities that we (wrongly) think are exclusive of consciousness, including enjoying positive emotions and disregarding negative ones. To illustrate, people that are subliminally exposed to drawings of happy or sad faces are emotionally conditioned in their evaluation of unknown objects, like Chinese characters for people who don’t know Chinese. If preceded by subliminal happy faces, these characters are more likely to elicit positive feelings when consciously perceived. This means that unconscious emotions exist, and these emotions are (plausibly) positive or negative. This in turn suggests that consciousness is not required to have emotions.

Accordingly, people with disorders of consciousness could also have unconscious emotions. Even though they are not capable of external behavior from which we could infer the presence of positive or negative emotional life, we cannot rule out the possibility that these patients’ residual brain activity is related to a residual unaware emotional life, which can be either positive or negative.

We should try to avoid becoming biased by the sort of “consciousness-centrism” that impedes us from seeing the total landscape: there is a lot going on behind (and beyond) the eyes of our awareness.

What does this imply for the ethics of caring for and interacting with people affected by severe disorders of consciousness? Well, as previously said, the ethical discourse surrounding the care for and the relationship with these people has usually focused on their residual awareness, scrutinizing whether and to what extent these people could consciously experience good and bad feelings. Yet if it is possible to have these experiences at the unaware level, shouldn’t this be a relevant consideration when engaging in an ethical analysis of patients with disorders of consciousness? In other words, shouldn’t we take care of their residual unconsciousness in addition to their residual consciousness?

I believe we need to enlarge the scope of our ethical analyses of patients with disorders of consciousness, or at least acknowledge that focusing on residual consciousness is not all we should do, even if it is all we presently can do.

Michele Farisco

Winkielman P., Berridge K.C. Unconscious emotion. Current Directions in Psychological Science. 2004;13(3):120-3

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Acknowledging the biobank and the people who built it

16 October, 2017 / / 0 Comments

Pär SegerdahlBiomedical research increasingly often uses biological material and information collected in biobanks. In order for a biobank to work efficiently, it is important not only that the biological material is stored well. The material must also be made available to science so that researchers easily and responsibly can share samples and information.

Creating such a biobank is a huge effort. Researchers and clinicians who collect bioresources might even be reluctant to make the biobank openly available. Why make it easy for others to access to your biobank if they do not give you any recognition?

In an article in the Journal of Community Genetics, Heidi C. Howard and Deborah Mascalzoni, among others, discuss a system that would make it more attractive to develop well-functioning biobanks. It is a system for rewarding researchers and clinicians who create high quality bioresources by making their work properly acknowledged.

The system, presented in the article, is called the Bioresource Research Impact Factor (BRIF). If I understand it, the system may work the following way. A biobank is described in a permanent “marker” article published in a specific bioresource journal. Researchers who use the biobank then quote the article in their publications and funding grants. In this way, you can count citations of bioresources as you count citations of research articles.

The article also describes the results of a study of stakeholders’ awareness of BRIF, as well as an ethical analysis of how BRIF can contribute to more responsible biobanking.

If you are building a biobank, read the article and learn more about BRIF!

Pär Segerdahl

Howard, H.C., Mascalzoni, D., Mabile, L. et al. “How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).” J Community Genet (2017). https://doi.org/10.1007/s12687-017-0332-6

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Communicating risk in human terms

4 October, 2017 / / 0 Comments

Pär SegerdahlThe concept of risk used in genetics is a technical term. For the specialist, risk is the probability of an undesired event, for example, that an individual develops some form of cancer. Risk is usually stated as a percentage.

It is well known that patients have difficulties to access the probability notion of risk. What do their difficulties mean?

Technical notions, which experts use in their specialist fields, usually have high status. The attitude is: this is what risk really is. Based on such an attitude, people’s difficulties mean: they have difficulties to understand risk. Therefore, we have to help them understand, by using educational tools that explain to them what we mean (we who know what risk is).

We could speak of communicating risk in the experts’ terms (and on their terms). Of course, one tries to communicate risk as simply and accessibly as possible. However, the notion of ​​what to communicate is fixed. Anything else would disturb the attitude that the expert knows what risk really is.

In an article in Patient Education and Counseling, Jennifer Viberg Johansson (along with Pär Segerdahl, Ulrika Hösterey Ugander, Mats G. Hansson and Sophie Langenskiöld) makes an inquiry that departs from this pattern. She explores how people themselves make sense of genetic risk.

How does Viberg’s study depart from the pattern? She does not use the technical notion of risk as the norm for understanding risk.

Viberg interviewed healthy participants in a large research project. She found that they avoided the technical, probability notion of genetic risk. Instead, they used a binary concept of risk. Genetic risk (e.g., for breast cancer) is something that you have or do not have.

Furthermore, they interpreted risk in three ways in terms of time. Past: The risk has been in my genome for a long time. When symptoms arise, the genetic risk is the cause of the disease. Present: The risk is in my genome now, making me a person who is at risk. Future: The risk will be in my genome my entire life, but maybe I can control it through preventive measures.

These temporal dimensions are not surprising. People try to understand risk in the midst of their lives, which evolve in time.

It is not the case, then, that people “fail” to understand. They do understand, but in their own terms. They think of genetic risk as something that one has or does not have. They understand genetic risk in terms of how life evolves in time. A practical conclusion that Viberg draws is that we should try to adapt genetic risk communication to these “lay” conceptions of risk, which probably help people make difficult decisions.

We could speak of communicating risk in human terms (and on human terms). What does genetic risk mean in terms of someone’s past, present and future life?

When you talk with people with lives to live, that is probably what the risk really is.

Pär Segerdahl

J. Viberg Johansson, et al., Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research, Patient Educ Couns (2017), http://dx.doi.org/10.1016/j.pec.2017.09.009

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Taking people’s moral concerns seriously

19 September, 2017 / / 0 Comments

Pär SegerdahlI recently published a post on how anxiety can take possession of the intellect: how anxiety, when it is interpreted by thoughts that rationalize it, can cause moral panic.

A common way of dealing with people’s moral concerns in bioethics is to take the concerns intellectually seriously. One tries to find logical reasons for or against the “correctness” of the anxiety. Is the embryo already a person? If it is, then it is correct to be morally concerned about embryonic stem cell research. Persons are then killed by researchers, who are almost murderers. However, if the embryo is not a person, but just an accumulation of cells, then there is at least one reason less to worry.

Bioethicists therefore set out to conclude the metaphysical issue about “the status of the embryo.” So that we will know whether it is intellectually correct to worry or not! One reason for this intellectualized approach is probably society’s need for foundations for decision-making. Should embryo research be allowed and, if so, in what forms? Decision-makers need to be able to motivate their decisions by citing intellectually appropriate reasons.

Bioethicists thus interpret people’s moral concerns as if they were motivated by intuitive folk-metaphysical thinking. This thinking may not always be perfectly logical or scientifically informed, but it should be possible to straighten out. That would satisfy society’s need for intellectually well-founded decisions that “take people’s concerns seriously.”

The problem with this way of taking people’s concerns seriously is that their worries are intellectualized. Do we worry on the basis of logic? Are children afraid of ghosts because they cherish a metaphysical principle that assigns a dangerous status to ghosts? Can their fear be dealt with by demonstrating that their metaphysical principle is untenable? Or by pointing out to them that there is no evidence of the existence of beings with the horrible characteristics their principle assigns to “ghosts”?

Why are many people hesitant about research with human embryos? I have no definitive answer, but doubt that it is due to some folk-metaphysical doctrines about the status of the embryo. Perhaps it is more related to the fact that the embryo is associated with so much that is significant to us. It is associated with pregnancy, birth, children, family life, life and death. The connection to these intimate aspects of life means that we, without necessarily having the view that embryo research is wrong, can feel hesitant.

The question is: How do we take such moral hesitation seriously? How do we reject delusions and calm ourselves down when the intellect starts to present us with horrible scenarios that certainly would motivate anxiety? How do we do it without smoothing things over or acting like faultfinders?

I believe that bioethics should above all avoid intellectualizing people’s moral concerns; stop representing moral hesitation as the outcome of metaphysical reasoning. If people do not worry because of folk-metaphysical doctrines about the embryo, then we have no reason to debate the status of the embryo. Instead, we should begin by asking ourselves: Where does our hesitation come from?

That would mean taking ourselves seriously.

Pär Segerdahl

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