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

This post in Swedish

Approaching future issues - the Ethics Blog


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

This post in Swedish

Approaching future issues - the Ethics Blog


Commercialization, but not at any price

February 14, 2017

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?

March 31, 2015

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

September 9, 2014

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

February 6, 2013

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

December 12, 2012

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


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