Learning from the difficulties

September 11, 2019

Pär SegerdahlIn popular scientific literature, research can sometimes appear deceptively simple: “In the past, people believed that … But when researchers looked more closely, they found that …” It may seem as if researchers need not do much more than visit archives or laboratories. There, they take a closer look at things and discover amazing results.

There is nothing wrong with this popular scientific prose. It is exciting to read about new research results. However, the prose often hides the difficulties of the research work, the orientation towards questions and problems. As I said, there is nothing wrong with this. Readers of popular science rarely need to know how physicists or sociologists struggle daily to formulate their questions and delve into the problems. Readers are more interested in new findings about our fascinating world.

However, there are academic fields where the questions affect us all more directly, and where the questions are at the center of the research process from beginning to end. Two examples are philosophy and ethics. Here, identifying the difficult questions can be the important thing. Today, for example, genetics is developing rapidly. That means it affects more people; it affects us all. Genetic tests can now be purchased on the internet and more and more patients may be genetically tested in healthcare to individualize their treatment.

Identifying ethical issues around this development, delving into the problems, becoming aware of the difficulties, can be the main element of ethics research. Such difficulty-oriented work can make us better prepared, so that we can act more wisely.

In addition, ethical problems often arise in the meeting between living human beings and new technological opportunities. Identifying these human issues may require that the language that philosophy and ethics use is less specialized, that it speaks to all of us, whether we are experts or not. Therefore, many of the posts on the Ethics Blog attempt to speak directly to the human being in all of us.

It may seem strange that research that delves into questions can help us act wisely. Do we not rather become paralyzed by all the questions and problems? Do we not need clear ethical guidelines in order to act wisely?

Well, sometimes we need guidelines. But they must not be exaggerated. Think about how much better you function when you do something for the second time (when you become a parent for the second time, for example). Why do we function better the second time? Is it because the second time we are following clear guidelines?

We grow through being challenged by difficulties. Philosophy and ethics delve into the difficulties for this very reason. To help us to grow, mature, become wiser. Individually and together, as a society. I do not know anyone who matured as a human being through reading guidelines.

Pär Segerdahl

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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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Genetic risk information: lines and stage directions

April 23, 2019

Pär SegerdahlOutside of their practical contexts, simple messages quickly lose their meaning. Recall what it is like to find an old Post-it Note: “Don’t forget the disk!” – What disk? The risk is great that we invent a context. Incomprehensible messages awaken our imagination.

Similarly, messages about genetic risk need practical contexts that make the information meaningful and prevent nightmarish imaginations. The information needs to become part of a larger drama. Otherwise, we begin to fantasize: “Greatly increased risk of breast cancer.” – What do they mean, “greatly increased”? What do they mean, “breast cancer”? What do they mean, “risk”?

The difficulty of understanding and benefitting from genetic risk information is probably partly due to lack of context. The potential for generating risk information is growing rapidly. All this information is waiting for its dramas: contexts where people can ask concrete questions and get practical advice. Educational methods for explaining percentages cannot replace the loss of context. People who get genetic risk information need to know more about the disease they are at risk of developing. They may want to know if they should notify the employer of the risk. They may want to know if something can be done to reduce the risk. They may want to know what it is like to live with the disease, or with the risk of getting it. How is the family affected? Can you work having the disease? Should one worry or is it reasonable to hope that one will not get the disease? And so on.

In short, well-functioning genetic risk information has two dimensions. First, an individual dimension: “You have a greatly increased risk of…” Secondly, a general dimension: Practical instructions on a wide variety of issues that people need to know more about, and about which they otherwise begin to fantasize.

To speak the language of the theater: The individual dimension (the simple risk message) is the lines. The general dimension is the stage directions. Genetic risk information consists of both lines and stage directions.

When we discuss whether genetic risk information empowers people to influence their future health or just worries them, when we discuss the difficulty of understanding risk information, we should be clearly aware of these two dimensions of the information. Are we discussing the lines or the stage directions? Or are we discussing the lines together with the stage directions?

Which dimension of genetic risk information is most relevant to the individual? Perhaps the lines are merely a reason for moving on to the stage directions. The dramatic risk lines may speak mainly to the healthcare staff, while the individual above all needs the stage directions.

One could not work at a theater without distinguishing between lines and stage directions. Perhaps something similar applies to genetic risk information.

Pär Segerdahl

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Genetic risk entails genetic responsibility

March 5, 2019

Pär SegerdahlIntellectual optimists have seen genetic risk information as a human victory over nature. The information gives us power over our future health. What previously would have been our fate, genetics now transforms into matters of personal choice.

Reality, however, is not as rosy as in this dream of intellectual power over life. Where there is risk there is responsibility, Silke Schicktanz writes in an article on genetic risk and responsibility. This is probably how people experience genetic risk information when they face it. Genetic risk gives us new forms of responsibility, rather than liberates us from nature.

Silke Schicktanz describes how responsibility emerges in situations where genetic risk is investigated, communicated and managed. The analysis exceeds what I can reproduce in a short blog post. However, I can give the reader a sense of how genetic risk information entails a broad spectrum of responsibilities. Sometimes in the individual who receives the information. Sometimes in the professional who provides the information. Sometimes in the family affected by the information. The examples are versions of the cases discussed in the article:

Suppose you have become strangely forgetful. You do a genetic test to determine if you have a gene associated with Alzheimer’s disease. You have the gene! The test result immediately makes you responsible for yourself. What can you do to delay or alleviate the disease? What practical measures can be taken at home to help you live with the disease? You can also feel responsibility for your family. Have you transferred the gene to your children and grandchildren? Should you urge them to test themselves? What can they do to protect themselves? The professional who administered the test also becomes responsible. Should she tell you that the validity of the test is low? Maybe you should not have been burdened with such a worrying test result, when the validity so low?

Suppose you have rectum-colon cancer. The surgeon offers you to participate in a research study in which a genetic test of the tumor cells will allow individualized treatment. Here, the surgeon becomes responsible for explaining research in personalized medicine, which is not easy. There is also the responsibility of not presenting your participation in the study as an optimization of your treatment. You yourself may feel a responsibility to participate in research, as patients have done in the past. They contributed to the care you receive today. Now you can contribute to the use genetic information in future cancer care. Moreover, the surgeon may have a responsibility to counteract a possible misunderstanding of the genetic test. You can easily believe that the test says something about disease genes that you may have passed on, and that the information should be relevant to your children. However, the test concerns mutations in the cancer cells. The test provides information only about the tumor.

Suppose you have an unusual neurological disorder. A geneticist informs you that you have a gene sequence that may be the cause of the disease. Here we can easily imagine that you feel responsibility for your family and children. Your 14-year-old son has started to show symptoms, but your 16-year-old daughter is healthy. Should she do a genetic test? You discuss the matter with your ex-partner. You explain how you found the genetic information helpful: you worry less, you have started going on regular check-ups and you have taken preventive measures. Together, you decide to tell your daughter about your test results, so that she can decide for herself if she wants to test herself.

These three examples are sufficient to illustrate how genetic risk entails genetic responsibility. How wonderful it would have been if the information simply allowed us to triumph over nature, without this burdensome genetic responsibility! A pessimist could object that the responsibility becomes overpowering instead of empowering. We must surrender to the course of nature; we cannot control everything but must accept our fate.

Neither optimists nor pessimists tend to be realistic. The article by Silke Schicktanz can help us look more realistically at the responsibilities entailed by genetic risk information.

Pär Segerdahl

Schicktanz, S. 2018. Genetic risk and responsibility: reflections on a complex relationship. Journal of Risk Research 21(2): 236-258

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Thesis on reproductive ethics

February 25, 2019

Pär SegerdahlOn Thursday, February 28, Amal Matar defends her thesis in the field of reproductive ethics.

As genetic tests become cheaper and more reliable, the potential use of genetic tests also expands. One use could be offering preconception genetic screening to entire populations. Prospective parents could find out if they are carriers of the same recessive autosomal genetic condition, and could plan future pregnancies. Carriers of such genetic conditions can be healthy, but if both parents have the same predisposition, the risk is 25 percent that their child will have the disease.

Preconception genetic screening is not implemented in Sweden. Would it be possible to do so in the future? What would the ethical and social implications be? Is it likely that preconception genetic screening will be implemented in Sweden? These are some of the questions that Amal Matar examines in her thesis.

Amal Matar’s interviews with Swedish healthcare professionals and policymaking experts indicate that preconception genetic screening will not be implemented in Sweden. The interviewees expressed the opinion that such screening would not satisfy any medical need, would threaten important values ​​in Swedish society and in the healthcare system, and require excessive resources.

Amal Matar defends her thesis in the Uppsala University Main Building (Biskopsgatan 3), room IV, on Thursday, February 28 at 13:00. You find an earlier interview with Amal Matar here. If you want to read the thesis, you find a link below.

Pär Segerdahl

Matar, Amal. 2019. Considering a Baby? Responsible Screening for the Future. Uppsala: Acta Universitatis Upsaliensis

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Why do we pay for genetic information that we do not use?

February 5, 2019

Pär SegerdahlAbout half a million people around the world have purchased direct-to-consumer genetic tests. A large majority say that they are willing to pay for the genetic information, even if the results do not reveal anything of clinical value. If so, why do they want to buy genetic information about themselves?

Many say they want health-relevant information. One can guess that they want information that helps them to live healthier: How should a person with my genes eat and exercise? However, the test results do not seem to motivate any changed behavior. Thus, people pay for genetic information, but they do not use it.

Alessandra Gorini and Gabriella Pravettoni reflect on the psychology behind consumers’ seemingly strange behavior. What makes so many buy genetic information that they will not use? In addition to the difficulty of understanding statistical information, they suggest that consumers may want to signal to themselves that everything is fine. People are generally optimists when it comes to risk. Most people think that they themselves are at less risk than others are to suffer from disease or other adverse events. Most also have a tendency to interpret information as confirming what they already believe.

What consumers of genetic tests pay for, then, is a positive signal to themselves. When they read the test results, optimistic and self-confirming cognitive processes are immediately activated: Look, I’m safe!

Gorini and Pravettoni argue that this self-signaling consumption of genetic information is problematic. The information is not used effectively. What can we do about it?

Rather than regulating the market of direct-to-consumer genetic tests, the authors propose that we should increase consumers’ knowledge and awareness, to help them use genetic information more effectively. However, if consumers are satisfied with the positive signal they sought and bought, are they motivated to acquire knowledge that can interfere with the signal?

Pär Segerdahl

Alessandra Gorini and Gabriella Pravettoni. 2016. Why do we pay for information that we won’t use? A cognitive-based explanation for genetic information seeking. European Journal of Human Genetics 24: 625. doi:10.1038/ejhg.2015.188

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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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