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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Supporting clinicians to trust themselves

October 3, 2018

Pär SegerdahlSuppose that you want to learn to speak a language, but the course is overloaded by grammatical terminology. During the lessons, you hardly hear any of the words that belong to the language you want to learn. They drown in technical, grammatical terms. It is as if you had come to a course on general linguistic theory, not German.

When clinicians encounter healthcare ethics as a subject of education, they may have similar experiences. As adult humans they already can feel when everything is alright in a situation. Or when there is a problem; when attention is needed and action must be taken. (We do it every day.) However, to handle the specific challenges that may arise in healthcare, clinicians may need support to further develop this already existing human ability.

Unfortunately, healthcare ethics is typically not presented as development of abilities we already have as human beings. Instead, it is presented as a new subject. Being ethical is presented as having the specific knowledge of this subject. Ethics then seems to be about reasoning in terms of abstract ethical concepts and principles. It is as if you had come to a course on general moral theory, not healthcare ethics. And since most of us do not know a thing about moral theory, we feel ethically stupid and powerless, and lose our self-confidence.

However, just as you don’t need linguistic theory to speak a language, you don’t need moral theory to function ethically. Rather, it is the other way around. It is because we already speak and function ethically that there can be such intellectual activities as grammar and moral theory. Can healthcare ethics be taught without putting the cart before the horse?

A new (free to download) book discusses the issue: Rethinking Health Care Ethics. The book is a lucid critique of healthcare ethics as a specific subject; a critique that naturally leads into constructive suggestions for an alternative pedagogy. The book should be of high interest to teachers in healthcare ethics, to ethicists, and to anyone who finds that ethics often is presented in ways that make us estranged from ourselves.

What most impresses me in this book is its trust in the human. The foundation of ethics is in the human self, not in moral theory. Any adult human already carries ethics in the self, without verbalizing it as specific ethical concepts and principles.

Certainly, clinicians need education in healthcare ethics. But what is specific in the teaching is the unique ethical challenges that may arise in healthcare. Ethics itself is already in place, in the living humans who are entering healthcare as a profession.

Ethics should not be imposed, then, as if it were a new subject. It rather needs support to grow in humans, and to mature for the specific challenges that arise in healthcare.

This trust in the human is unusual. Distrust, feeding the demand for control, is so much more common.

Pär Segerdahl

Scher, S. & Kozlowska, K. 2018. Rethinking Health Care Ethics. Palgrave

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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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What does the order of authors mean?

September 19, 2018

Pär SegerdahlHow should we interpret the sequence of author names in academic publications? Does it inform us about how much each author contributed to the publication?

After reading an article on the topic by Gert Helgesson and Stefan Eriksson, I realize that authorship order is a very disorderly matter. The first and last positions are often counted as the most important. But not always. To my surprise, not even a first position necessarily signifies first authorship. Sometimes, the asterisk after the author whose contact details are given is interpreted as a sign of first authorship. Sometimes the asterisk means that this author is subordinate and handles all practicalities associated with the publication.

Sometimes the second position is of particular importance. Sometimes not. Sometimes the next to last position has a particular interpretation. Sometimes another. Helgesson and Eriksson talk about group traditions and describe conventions in different scientific fields. Are there really no guidelines to follow? No, actually not. Author guidelines at most recommend authors to agree well in advance on the order of authors. However, since the guidelines do not specify what the order signifies, the meaning of the agreed upon authorship order is unclear!

Considering how meritorious authorship is in academic competition for positions and grants, this lack of order is surprising. Is the question too sensitive? Will an overly clear order lead to time-consuming quarrels between authors about who should stand first, last, second place, second to last, with asterisk, without asterisk, and so forth?

Helgesson and Eriksson discuss different proposals for clarifying authorship order. One proposal they encountered is that the first and last positions each render 40% of the total value of the paper. The remaining 20% ​​is shared equally by the authors in the intermediate positions. For five authors, authorship value would thus be divided: 40, 6.7, 6.7, 6.7 and 40%. This type of proposal is dismissed, because fixed values ​​would be fair only if work efforts actually happened to be distributed just that way (which is unlikely).

A more flexible system could be to provide actual percentages, on a case-by-case basis. But how are actual percentages determined? Different authors contribute qualitatively differently: by designing the study; by analyzing data; by drafting the paper. What kind of contribution has most weight?

Another suggestion is not to assign a relative value to the authors’ contributions. Instead, one specifies what each one contributed. Contributorship instead of authorship, where the contribution is described in absolute terms rather than relative. For example: “contributed to designing the study,” “contributed to data analysis,” “contributed to drafting the paper.” A problem with this proposal, Helgesson and Eriksson point out, is that it in fact says very little about absolute contributions. “Contributed to designing the study” can mean both substantial and lightweight contributions.

The article ends by taking a step back. For perhaps we took a step in the wrong direction when we required a more orderly authorship order? The problem about the meaning of the sequence of author names presupposes an individualistic and competitive outlook on science. Today, there are also other tendencies, which may be more worthwhile, such as striving to make science open and socially responsive. Perhaps we should avoid attaching too much importance to authorship order?

Should our focus be on collective contributions to science, with and for society, rather than on individual merit ​​in the competition for employment and funding?

Thus the article ends, with a question calling for more contemplation.

Pär Segerdahl

Helgesson, G. & Eriksson, S. Authorship order. Learned Publishing, 2018, doi: 10.1002/leap1191

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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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Sharing a blog post on consciousness

August 29, 2018

Michele Farisco at CRB has written an interesting post for the BMC blog on medicine. He says that “whereas ethical analyses of disorders of consciousness traditionally focus on residual awareness, there may be a case to be made for the ethical relevance of the retained unawareness.”

Interested to read more? Here is a link to the post: On consciousness and the unconscious.

Pär Segerdahl

We recommend readings - the Ethics Blog


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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