Swedish policymakers on genetic screening before pregnancy

October 17, 2018

Pär SegerdahlSome genetic diseases do not develop in  the child unless both parents happen to have the same gene. Parents can be healthy and unaware that they have the same non-dominant disease gene. In these cases, the risk that their child develops the disease is 25 percent.

Preconception expanded carrier screening could be offered to entire populations, to make everyone who so wishes more informed about their genetic vulnerabilities and better equipped to plan their partner choice and pregnancies. In Sweden, this is not relevant, but the issue could be considered in the future.

In a new article in the Journal of Community Genetics, Amal Matar (PhD student at CRB) reports an interview study with Swedish policymakers: experts at the Swedish National Council on Medical Ethics, at the Swedish Agency for Health Technology Assessment and Assessment of Social Services, and at the National Board of Health and Welfare. Amal Matar wanted to investigate how these influential experts perceive ethical and social aspects of preconception expanded carrier screening, as a new health technology.

It is exciting to get insight into how Swedish policymakers reason about offering genetic screening before pregnancy. They consider alternative financing, prioritization and costs for healthcare. They discuss Sweden as part of the EU. They reflect on what services the healthcare system needs to offer people, depending on what the test results reveal about them. They talk about the need for more research and public engagement, as well as about long-term societal effects.

Questions about responsibility, both parental and societal, struck me as extra interesting. If friends and relatives test themselves, it may seem irresponsible not to do so. Couples can then feel a social pressure to undergo the test, which makes their voluntariness illusory. The experts also saw problems in actively going out looking for disorders in people who are not sick. Society has a responsibility to help people when they are ill, but looking for disease risks in people without symptoms changes the whole evaluation of the risks and benefits of a health technology.

Amal Matar’s conclusion is that Swedish policymakers believe that preconception expanded carrier screening currently is not appropriate in the Swedish healthcare system. The reason commonly used in favor of screening, that it supports well-informed reproductive decision-making, was considered insufficient by the experts if the screening is financed through taxes. They also saw long-term threats to important values ​​in Swedish healthcare.

Pär Segerdahl

Matar, A., Hansson, M.G. and Höglund, A.T. “A perfect society” – Swedish policymakers’ ethical and social views on preconception expanded carrier screening. Journal of Community Genetics, published online 26 September 2018, https://doi.org/10.1007/s12687-018-0389-x

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Genetic risk: Should researchers let people know?

September 24, 2018

Should researchers inform research participants if they happen to discover individual genetic risks of disease? Yes, many would say, if the information is helpful to the participants. However, the value of complex genetic risk information for individuals is uncertain. Jennifer Viberg Johansson suggests that this uncertainty needs to be acknowledged by both geneticists and ethicists.

One reason people want to participate in large genetic studies is the comprehensive health checks researchers often offer to collect data. In the future, people could also be offered information about genetic risks. According to Jennifer Viberg Johansson, there are some factors researchers should consider before offering these kinds of results.

Providing genetic risk information may not be as helpful to individuals as one may think. Knowing your genetic make-up is not the same as knowing your own probability for disease. In addition, the genetic risk information from research is not based on symptoms or personal concerns, as it would be in the healthcare system. It is thus less “personalised” and not connected to any symptoms.

Genetic risk information is complex and can be difficult to understand. To the research participants interviewed by Jennifer Viberg Johansson, risk information is something that offers them an explanation of who they are, where they are from, and where they may be heading. To them, learning about their genetic risk is an opportunity to plan their lives and take precautions to prevent disease.

Whether research participants want genetic risk information or not is more complex. Research participants themselves may change their answer depending on the way the question is asked. Risk research shows that we interpret probabilities differently, depending on the outcome and consequences. Jennifer Viberg Johansson’s work points in the same direction: probability is not an essential component of people’s decision-making when there are ways to prevent disease.

People have difficulties making sense of genetic risk when it is presented in the traditional numeric sense. It is hard to interpret what it means to have a 10 per cent or 50 per cent risk of disease. Instead, we interpret genetic risk as a binary concept: you either have risk, or you don’t. Based on her results, Jennifer Viberg Johansson suggests we keep this in mind for genetic counselling. We need to tailor counselling to people’s often binary perceptions of risk.

Communicating risk is difficult, and requires genetic counsellors to understand how different people understand the same figures in different ways.

Jennifer Viberg Johansson defended her dissertation September 21, 2018.

Anna Holm

Viberg Johansson J., (2018), INDIVIDUAL GENETIC RESEARCH RESULTS – Uncertainties, Conceptions, and Preferences, Uppsala: Acta Universitatis Upsaliensis

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Nurses’ vulnerable position when care and research coincide

September 10, 2018

Pär SegerdahlA new article highlights ethical challenges that nurses face in their profession when more and more clinical trials are conducted on cancer patients.

Nursing alone is stressful. Studies have shown how heavy workload and being pressed for time can cause moral blindness and emotional immunization among nurses. In clinical trials, the situation is even more complicated, due to dual professional roles. The nurses have to accommodate both the values of care and the values of research. Caring for cancer patients coincides with recruiting patients as research participants and coordinating clinical trials on them according to detailed research protocols.

The article by Tove Godskesen et al. describes challenges faced by nurses burdened with this dual professional identity. The most difficult challenges concern cancer patients near the end of life, who no longer respond to the standard therapy. They often hope desperately that research participation will give them access to the next generation of cancer drugs, which may work more efficiently on them. This unrealistic hope creates difficulties for the nurses. They must recruit cancer patients to clinical trials, while the patients often are so terminally ill that they, from a perspective of caring, perhaps rather should be allowed to end their lives in peace and quiet.

An additional complication, next to the heavy workload in nursing and the dual identity as a nurse in the service of research, is that the number of clinical trials increases. There is a political ambition to accelerate the development, to support the Nordic pharmaceutical industry. This means that more and more nurses are engaged to coordinate trials: a task for which they rarely were trained, for which they hardly have time to prepare, and over which they lack power, given their position in the hierarchy of healthcare.

In view of the political ambition to increase the number of clinical trials, there should be a corresponding ambition to support the increasing number of nurses who will have to assume dual professional roles. Godskesen’s study indicates that there is a lack of systematic strategies to handle the situation. Nurses who coordinate trials on patients support each other, to the best of their abilities, over a quick cup of coffee.

Godskesen recommends more strategic training and better support for nurses working with clinical trials. For the nurses’ sake, and not least for the sake of patient safety.

Pär Segerdahl

Tove E. Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset, Merja Pirinen, Zandra Engelbak Nielsen. 2018. When Nursing Care and Clinical Trials Coincide: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges. Journal of Empirical Research on Human Research Ethics. doi.org/10.1177/1556264618783555

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Ethical competence for the decision not to resuscitate

August 28, 2018

Pär SegerdahlSometimes, physicians have to decide that a cancer patient has such a poor prognosis that he or she should not be resuscitated through cardiopulmonary rescue, if discovered with cardiac arrest. The procedure is violent and would in these cases cause unnecessary suffering.

The situation is stressful for the healthcare team no matter which decision is taken. Providing violent cardiopulmonary rescue to a terminally ill cancer patient can be perceived as poor care at the end of life. At the same time, one wishes of course to treat the patient, so the decision to not resuscitate can be stressful, too. The decision requires ethical competence.

Mona Pettersson, PhD student at CRB, examines in her dissertation the decision not to resuscitate patients in the fields of oncology and hematology. In an article in BMC Medical Ethics, she describes physicians and nurses’ reflections on ethical competence in relation to the decision not to resuscitate. Even if the physician takes the decision, the nurses are involved in the highest degree. They have responsibility for the care of the patient and of the relatives.

The ethical difficulties concern not just the decision itself. The difficulties also concern how patients and relatives are informed about the decision, as well as how the entire healthcare team is informed, involved and functions. What competence is required to ethically handle this care decision? How can such ethical competence be supported?

According to Pettersson, ethical competence involves both personal qualities and knowledge, as well as ability to reflect on how decisions best are made and implemented. In practice, all this interacts. For example, a physician may have knowledge that the patient should be informed about the decision not to resuscitate. At the same time, after reflection, the physician may choose not to inform, or choose to inform the patient using other words.

The physicians and nurses in Mona Pettersson’s study expressed that their ethical competence would be supported by greater opportunities for reflection and discussion of ethics near the end of life within oncology and hematology. This is because healthcare is always situated. The ethical difficulties have a definite context. Healthcare professionals are not ethically competent in general. Their ethical competence is linked to their specific professional practices, which moreover differ for physicians and nurses.

If you want to read more about Mona Pettersson’s dissertation, please read the presentation of her at CRB’s website: Healthcare, ethics and resuscitation.

Pär Segerdahl

Pettersson, M., Hedström. M and Höglund, A. T. Ethical competence in DNR decisions – a qualitative study of Swedish physicians and nurses working in hematology and oncology care. BMC Medical Ethics (2018) 19:63. htdoi.org/10.1186/s12910-018-0300-7

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Driverless car ethics

June 20, 2018

Pär SegerdahlSelf-driving robot cars are controlled by computer programs with huge amounts of traffic rules. But in traffic, not everything happens smoothly according to the rules. Suddenly a child runs out on the road. Two people try to help a cyclist who collapsed on the road. A motorist tries to make a U-turn on a too narrow road and is stuck, blocking the traffic.

Assuming that the robots’ programs are able to categorize traffic situations through image information from the cars’ cameras, the programs must select the appropriate driving behavior for the robot cars. Should the cars override important traffic rules by, for example, steering onto the sidewalk?

It is more complicated than that. Suppose that an adult is standing on the sidewalk. Should the adult’s life be compromised to save the child? Or to save the cyclist and the two helpful persons?

The designers of self-driving cars have a difficult task. They must program the cars’ choice of driving behavior in ethically complex situations that we call unexpected, but the engineers have to anticipate far in advance. They must already at the factory determine how the car model will behave in future “unexpected” traffic situations. Maybe ten years later. (I assume the software is not updated, but also updated software anticipates what we normally see as unexpected events.)

On a societal level, one now tries to agree on ethical guidelines for how future robot cars should behave in tragic traffic situations where it may not be possible to completely avoid injuries or fatal casualties. A commission initiated by the German Ministry for Transportation, for example, suggests that passengers of robot cars should never be sacrificed to save a larger number of lives in the traffic situation.

Who, by the way, would buy a robot car that is programmed to sacrifice one’s life? Who would choose such a driverless taxi? Yet, as drivers we may be prepared to sacrifice ourselves in unexpected traffic situations. Some researchers decided to investigate the matter. You can read about their study in ScienceDaily, or read the research article in Frontiers in Behavioral Neuroscience.

The researchers used Virtual Reality (VR) technology to expose subjects to ethically difficult traffic situations. Thereafter, they studied the subjects’ choice of traffic behavior. The researchers found that the subjects were surprisingly willing to sacrifice themselves to save others. But they also took into consideration the age of potential victims and were prepared to steer onto the sidewalk to minimize the number of traffic victims. This is contrary to norms that we hold important in society, such as the idea that age discrimination should not occur and that the lives of innocent people should be protected.

In short, humans are inclined to drive their cars politically incorrectly!

Why was the study done? As far as I understand, because the current discussion about ethical guidelines does not take into account empirical data on how living drivers are inclined to drive their cars in ethically difficult traffic situations. The robot cars will make ethical decisions that can make the owners of the cars dissatisfied with their cars; morally dissatisfied!

The researchers do not advocate that driverless cars should respond to ethically complex traffic situations as living people do. However, the discussion about driverless car ethics should take into account data on how living people are inclined to drive their cars in traffic situations where it may not be possible to avoid accidents.

Let me complement the empirical study with some philosophical reflections. What strikes me when I read about driverless car ethics is that “the unexpected” disappears as a living reality. A living driver who tries to handle a sudden traffic situation manages what very obviously is happening right now. The driverless car, on the other hand, takes decisions that tick automatically, as predetermined as any other decision, like stopping at a red light. Driverless car ethics is just additional software that the robot car is equipped with at the factory (or when updating the software).

What are the consequences?

A living driver who suddenly ends up in a difficult traffic situation is confronted – as I said – with what is happening right now. The driver may have to bear responsibility for his actions in this intense moment during the rest of his life. Even if the driver rationally sacrifices one life to save ten, the driver will bear the burden of this one death; dream about it, think about it. And if the driver makes a stupid decision that takes more lives than it saves, it may still be possible to reconcile with it, because the situation was so unexpected.

This does not apply, however, to the robot car that was programmed at the factory according to guidelines from the National Road Administration. We might want to say that the robot car was preprogrammed to sacrifice our sister’s life, when she stood innocently on the sidewalk. Had the car been driven by a living person, we would have been angry with the driver. But after some time, we might be able to start reconciling with the driver’s behavior. Because it was such an unexpected situation. And the driver is suffering from his actions.

However, if it had been a driverless car that worked perfectly according to the manufacturer’s programs and the authorities’ recommendations, then we might see it as a scandal that the car was preprogrammed to steer onto the sidewalk, where our sister stood.

One argument for driverless cars is that, by minimizing the human factor, they can reduce the number of traffic accidents. Perhaps they can. But maybe we are less accepting as to how they are programmed to save lives in ethically difficult situations. Not only are they preprogrammed so that “the unexpected” disappears as a reality. They do not bear the responsibility that living people are forced to bear, even for their rational decisions.

Well, we will probably find ways to implement and accept the use of driverless cars. But another question still concerns me. If the present moment disappears as a living reality in the ethics software of driverless cars, has it not already disappeared in the ethics that prescribes right and wrong for us living people?

Pär Segerdahl

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Inequalities in healthcare – from denial to greater awareness

February 14, 2018

Pär SegerdahlSwedish law prescribes healthcare on equal terms for the whole population. Complying with this law is more difficult than one might believe, since discrimination tends to happen unknowingly, under our own radar.

Telephone nursing has been thought to increase equality in healthcare, because it is so easily accessible. However, research has demonstrated inequalities in telephone counseling. Callers are not treated equally.

Given the role of unawareness in the drama, this is not surprising. Despite the best intentions, treating people equally is very difficult in practice. What can we do about it?

If unawareness is a factor and discrimination largely happens unintentionally, I do not think we can conclude that it must be the result of a “bad system.” Even if discrimination arises unintentionally, it is humans who discriminate. Humans are not just their awareness, but also their unawareness.

In an article in the International Journal of Equity in Health, Anna T. Höglund (and four co-authors) investigates awareness of discrimination in healthcare, especially in telephone nursing. Swedish telephone nurses responded to a questionnaire about discrimination and equal treatment. The nurses’ answers could then be analyzed in terms of four concepts: denial, defense, openness and awareness.

Denial: some nurses denied discrimination. Defense: Some acknowledged that care was not always given on equal terms, but said that measures were taken and that the problem was under control. Openness: some of the nurses found the problem important and wished they could learn more about care on equal terms. Awareness: Some clearly saw how discrimination could occur and gave examples of strategies they used to avoid complex discriminatory patterns of which they were aware.

Rather than explaining unintended discrimination as the result of a “bad system,” these four concepts provide us with tools that can help us handle the problem more responsibly.

Anna T. Höglund proposes two complementary ways of viewing the four concepts. You can see them as positions along a line of development where a person can mature and move from denial or defense, through openness, towards the ultimate goal, awareness. But you can also imagine a person moving back and forth between positions, depending on the circumstances.

One recognizes oneself in these positions; unfortunately, not least in the positions denial and defense. The conceptual model developed in the article increases awareness of discrimination as largely a matter of our awareness and unawareness.

The authors add a fifth concept to the model: Action. If I understand them, they do not mean by “action” correcting a “bad system,” thereby controlling the problem. On the contrary, that would appear very much like expressing the defensive position above. (This indicates how much unawareness there is in many bureaucratic attempts to “control” societal problems through “systems,” to which one later refers: “We have taken appropriate measures, the problem is under control!”)

No, we need to continuously work on the problem; continually address ourselves and our patterns of acting. The conceptual model developed in the article gives us some tools.

Pär Segerdahl

Höglund, A.T., Carlsson, M. Holmström, I.K., Lännerström, L. and Kaminsky, E. 2018. From denial to awareness: a conceptual model for obtaining equity in healthcare. International Journal for Equity in Health 17. DOI 10.1186/s12939-018-0723-2

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Communicating risk in human terms

October 4, 2017

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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