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

Tag: health care costs

Thesis on reproductive ethics

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

This post in Swedish

Approaching future issues - the Ethics Blog

Swedish policymakers on genetic screening before pregnancy

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

This post in Swedish

Approaching future issues - the Ethics Blog

Commercialization, but not at any price

Pär SegerdahlIn a previous post, I tried to make the point that the pharmaceutical industry can support altruism between research participants and patients, despite the fact that the industry itself is not altruistic but is driven by profit. Medical research will not benefit patients, unless results are developed into commercially available treatments.

However, this presupposes, of course, that pricing is reasonable, so that we can actually afford the drugs. Otherwise, research and research participation become meaningless.

Today, I just want to recommend an article in the journal Cell, where the authors argue that the prices of new cancer drugs have become indefensibly high. They propose new collaborations between academic researchers and small companies, to offer cancer drugs at more reasonable prices. Researchers should ensure that the companies they work together with are willing to sell the drugs with smaller profit margins.

You can find a summary of these ideas in The Guardian.

Pär Segerdahl

Workman, P. Draetta, G. F., Schellens, J. H. M., Bernards, R. (2017). How much longer will we put up with $100,000 cancer drugs? Cell 168: 579-583.

This post in Swedish

We recommend readings - the Ethics Blog

Is it ethical that uninformed members of the public decide just how bad your disability is? (By Terry Flynn)

Terry FlynnLast time I raised the possibility of changing child health policy because teenagers are more likely than adults to view mental health impairments as being the worst type of disability. However, today I consider adults only in order to address a more fundamental issue.

Imagine you had an uncommon, but not rare, incurable disease that caused you to suffer from both “moderate” pain and “moderate” depression and neither had responded to existing treatments. If policy makers decided there were only enough funds to try to help one of these symptoms, who decides which should get priority?

In most of Europe, perhaps surprisingly, it would not be you the patient, nor even the wider patient group suffering from this condition. It is the general population. Why? The most often quoted reason will be familiar to those who know the history of the USA: “no taxation without representation”. Tax-payers supposedly fund most health care and their views should decide where this money is most needed. If they consider pain to be worse than depression, then health services should prioritise treatment for pain.

Thus, many European countries have conducted nationally representative surveys to quantify their general public’s views on various health states. Unfortunately Swedish population values were only published last year, almost two decades after the first European country published theirs. Although late, these Swedish population values raise a disturbing issue.

Suppose the general population is wrong?

Why might this be? Many people surveyed are, and always have been, basically healthy. How do they know whether depression is better or worse than pain? In fact, these people tend to say pain would be worse, whilst patients who have experienced both say the opposite.

The Swedish general population study was large and relatively well equipped to investigate how people in ill health value disability. And, indeed, they do value it differently than the average healthy Swedish person.

So is it ethical to disenfranchise patients in order that all citizens, informed or not, have a say?

Why not use the views of patients instead?

Well actually the stated policy in Sweden is that the health values ideally should come from the individuals affected by the health intervention (patients). So Sweden now has the information required to follow its own health policy aims. Perhaps it’s time politicians were asked if it is ethical to prioritise pain over mental health, just because various general populations thought this is so.

As a final thought, I return to the issue of “what funds healthcare”? You may be surprised to learn that the “general taxation” answer is wrong here too. But that strays beyond health care and ethics and into the dark heart of economics, which I will therefore discuss elsewhere next week!

Terry Flynn

We like challenging questions - the ethics blog

The voices of telenursing

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogI believe that many who call a telenurse are wondering which voice they will encounter. Will it be considerate or dismissive? Male or female? Young or old? Sympathetic or unsympathetic?

I guess also the telenurse is wondering which voice he or (usually) she will encounter when answering the call. Will it be self-assertive or self-denying? Male or female? Young or old? Eloquent or stumbling?

This uncertainty is revealing. Telephone counseling has sensitive dimensions that influence how the conversation develops and what it leads to. There is no direct connection between how you feel and the advice you get, for it will also depend on how the voices take shape and come together in conversation. We know this instinctively before the conversation started. Therefore we wonder, perhaps with some dread: what will the other voice be like?

This is a challenge for telenursing. The aim is to make health care more effective, accessible and safe, and there is potential to challenge inequities in health care. Meanwhile, gender, age, ethnicity and socioeconomic status will be expressed in voices that respond to each other largely beyond our conscious control.

Therefore, it is an important research task to study telenursing and raise awareness of what is happening in the conversations. One such study from Uppsala University was recently published:

The study is done by Roya Hakimnia, together with Inger K. Holmström, Marianne Carlsson and Anna T. Höglund. They develop a qualitative analysis of 20 calls to Swedish Healthcare Direct, and identify a number of relevant types of calls. One type of call, for example, is when the telenurse speaks more as a gatekeeper than as a nurse. Another is when gender norms are central and have consequences, as when a man calls reluctantly and doesn’t get the advice he might need. Another type of call is distinctly medical and avoids the life situation of the caller, although it might be what is relevant.

Portions of several conversations are included in the article. One can thus read transcripts of specific calls, and analyses of them, side by side. This I found quite excellent. The analyses help one to see and to think further about what is happening in the conversations, while the conversations help one to see the point of the analyses.

The study is in my opinion a fine example of how qualitative research can highlight sensitive processes that we normally do not survey or control. Sometimes we need to look more closely at the individual cases.

Pär Segerdahl

In dialogue with patients

Solidarity and biobanking

The concept of solidarity is currently receiving attention in bioethics and inspires new approaches to ethical problems.

The Nuffield Council on Bioethics recently published a report – Solidarity: reflections on an emerging concept in bioethics – initiating the development of a systematic solidarity framework for approaching difficult ethical questions in biobanking, biosecurity and health inequalities.

Concerning biobank participation, for example, one of the authors of the report makes this interesting statement:

  • “In the spirit of solidarity, we believe that it is acceptable to ask participants to agree to their sample being used in any future research that is within the broad aims of the biobank and has been approved by a research ethics committee. The risks to the participant are very low yet it would save valuable time and resources for the biobank.”

It is furthermore suggested that participation agreements should replace traditional consenting procedures. – I will study this suggestion and hope I can comment on it soon.

Continuing the work in the report, the Nuffield Council on Bioethics and the Brocher Foundation organize an international symposium:

The report and the symposium appear very interesting!

Pär Segerdahl

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Extended deadline for Researcher in Health Economics: January 7, 2013

Ethical questions about health care and medical research often require empirical input, to make arguments valid for real conditions.

Many of the future issues that engage us at CRB need empirical basis in so called Discrete Choice Experiments (DCE). We are therefore recruiting a researcher with a doctoral degree in health economics and documented skills in DCE.

We are looking for a creative person who likes multidisciplinary collaboration and is fluent in English, and who can start working as soon as possible.

Read more and submit your application!

Pär Segerdahl

ethics needs empirical input - the ethics blog

Research for the sake of the patient

We regularly tell strangers about sensitive aspects of our lives. We do it every time we visit the doctor. We do it without hesitating, in spite of the fact that the information won’t stay with the doctor to whom we give it.

The information is archived and will be read by health care staff in the future, when we visit a hospital again. As patients, we are satisfied with this state of affairs. Typically, we are happy that our samples are saved for future use, and that research is being done on our data to improve the quality of the care.

It is obvious to us that these actions are taken for our sake as patients, or as future patients.

However, when the same kind of data is collected for similar overall purposes, but outside of the health care sector, in the construction of biobanks and registers for future medical research, it suddenly becomes more tempting to worry about the safety of our data.

In spite of the fact that the researchers’ information about us

  1. normally is less comprehensive than in the doctor’s journal,
  2. is coded so that the connection to us is as safe as in a bank vault,
  3. isn’t used to do research on us individually, but to explore human patterns of disease,

a tendency to imagine nightmarish scenarios of surveillance appears. – Why?

One reason could be an assumption that researchers only want to answer their own questions. They don’t do research for our sake. They are curious and need our support to realize their own research goals.

Another reason could be an assumption that if medical research has commendable purposes related to health and health care, these purposes are very general and societal: Improved Public Health; Decreased Health Care Costs; A Flourishing Pharmaceutical Sector etc.

Who cares about little me?

When I visit the doctor, the connection to my own health and care is obvious. When I donate blood to the biobank for future research, on the other hand, the connection to me as a patient, or as a future patient, is less obvious.

Still, today’s health care depends on yesterday’s research.

The information I give the doctor would not help me a bit as a patient, if millions had not already provided medical research with their data. My doctor wouldn’t even be able to suggest a diagnosis, or recommend an effective treatment.

I believe we need to defuse the issue of personal data in biobanks and research registers; calm down our tendency to think that the information is collected without regard to us, and for wholly different purposes than in health care. Even in research, our data are collected for our sake: so that we, the day we visit the hospital and tell the doctor about our troubles, can expect well-founded diagnoses and effective treatments.

If you want to reflect more about our interest as future patients that there is ongoing biobank and register research, I want to recommend a coming dissertation:

  • Biobank Research – Individual Rights and Public Benefit

Author is Joanna Stjernschantz Forsberg at CRB, who defends her dissertation the 6th of October in Uppsala.

I also want to recommend the interactive conference, HandsOn: Biobanks, in Uppsala 20-21 September, which tries to illuminate the values of biobanking. You can register for the conference until the 11th of September.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Interactive conference seeks the value of biobanking

I have the privilege of belonging to a group of ethicists and law scholars that currently discuss how to visualize ethical and legal dimensions of biobanking.

We organize an interactive part of the scientific conference program for HandsOn: Biobanks in September. The conference invites participants to Uppsala to explore the values of biobanking and to take part in its interactive exhibition.

Biobanking is hot in medicine. There are hopes that it will substantially improve diagnosis, treatment and prevention of widespread as well as rare diseases. At the same time, however, the route to such values is difficult to survey, and the goals of large biobank investments are not always entirely transparent.

HandsOn: Biobanks is an ambitious attempt to explore and visualize the values of biobanking and the path towards them.

The conference asks: What are the values sought after? How can they be achieved in practice? There are the ethical, legal, scientific and commercial challenges, but there are also challenges for the industry. How can biobanking affect public trust in medical research and industry?

The conference combines keynote presentations with idea labs and educational sessions. The interactive part of the conference where I participate is called “the Route.” It follows the research process from ethical review, consent, sampling, storage and analysis, to end results that hopefully add value in ethics and trust, in clinical practice, in health economy, and in drug development.

If you want to participate in this interactive conference and help us better understand the values of biobanking, or simply are curious to see how we manage to solve the tricky problem of visualizing ethical and legal aspects – keep these dates in mind:

We are in the midst of brainstorming “the Route.” I hope that future blog posts can share with you some of the ethical and legal issues that we want to visualize and make accessible to participant interaction.

Registration is open – hope to see you in September!

Pär Segerdahl

The economisation of the language of medicine

Two American physicians recently wrote in the New England Journal of Medicine about how they were forced back to school again learning another foreign language. In medical school they learned that measles was called rubeola and itching pruritus. Today they learn that patient is called “customer” (or “consumer”) while doctor and nurse both are called “providers.”

The authors guess that spiralling health care costs drive this “economisation” of their professional language. Economists and politicians believe that the solution to the cost problematic lies in the industrialisation and standardisation of health care. Hospitals are to be run as modern businesses and the traditional language of medicine modified with terms that correspond to the professionals’ new factory functions. Above all, the patient relation is updated as a customer relation.

The two doctors see the economisation of their language as reductionist. It neglects the psychological, spiritual, and humanistic aspects of the relation to the patient. Precisely these aspects made medicine a “calling,” they write. The economisation of medicine concerns not only language, however, but also the organization of work. Doctors are less free to make their own decisions based on their clinical judgment. They are forced to follow manuals written by experts, as if they were on the factory floor following the chief engineer’s scheme.

When I read the article I thought that an alternative way of formulating the problem is in terms of means and ends. The authors’ note that clinical care always had a financial aspect, but the treatment of the patient still was in focus as the doctor’s primary goal. When profit took overhand as the goal, it was seen as a betrayal of the doctor’s calling and worth ridiculing, as in Moliere’s plays. The economisation of medicine turns the relation of means and ends inside out. The end of treating the patient is snatched out of the doctor’s hands and become a means towards other, economic ends. The analysis of the alienation this means is old and it is tempting to hear echoes from another century in the article’s finish, which I cannot avoid paraphrasing: “Doctors and nurses of the world, unite! Through off the language that demeans both patient and professional and that threatens the heart of medicine!”

Simultaneously, one must admit that new generations grow up that do not seem alienated in this new world, but act as self-evident consumers of health care.

Pär Segerdahl

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