The Ethics Blog

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

Month: December 2023

Medical ethics conference in Uppsala, 10–11 June 2024

19 December, 2023 / / 1 Comment

Since 2022, an annual conference in medical ethics is organized by Swedish universities. The first conference was organized by Lund University and the second by Karolinska Institutet. The next conference will be arranged on 10–11 June 2024 by us at the Centre for Research and Bioethics at Uppsala University. Conference names vary with the host university, our conference in June is thus named UMEC – Uppsala University Medical Ethics Conference.

We welcome researchers in medical ethics broadly conceived from Sweden as well as other countries, and oral presentations must be in English. If you would like to present your work at the conference, you are welcome to submit an abstract no later than March 31, 2024. We are interested in both normative approaches and empirical studies with normative relevance for issues in clinical ethics, public health ethics, research ethics and medical law.

We hope you want to attend the conference. You can find more information about the abstract and presentation as well as about the conference venue and travel options here: UMEC – Uppsala University Medical Ethics Conference.

Please note that the information is still incomplete and that more details will come as we get closer to the conference date.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

This post in Swedish

We recommend conferences

Questions about evidence and guidelines in healthcare

orthoses, photo by ThisIsEngineering på Pexels
12 December, 2023 / / 1 Comment

Finding your way through the complex web of guidelines and requirements for evidence in healthcare can be challenging. It is easy to imagine that these guidelines are downloaded from above, like a collection of commandments, but the truth is that they are shaped and changed in a complex process of negotiation and deliberation.

My colleagues and I in prosthetics and orthotics in Region Uppsala in Sweden are involved in the procurement of orthopedic devices for patients, such as prostheses, orthoses, splints, sitting frames, medical corsets, orthopedic shoes and insoles. We often ask ourselves an important question: Who should receive tax-funded prosthetics and orthotics devices and how expensive should they be? Where do we find guidelines for our decisions? An example of a guiding document is the general guidelines for the prescription of assistive devices in the County Council of Uppsala (from 2015). This document is based on the laws and guidelines of the parliament, UN conventions and the Council’s own plans. It becomes clear that guidelines are not isolated rules, but rather an interweaving of different norms and values that guide healthcare decisions.

Despite clear priority levels and demands for individual assessment of health effects, we find that patients today are denied orthopedic devices with the argument that there is a lack of evidence that the aid works for the type of diagnosis in question. Is this argument as strong when it comes to orthopedic devices as it is when it comes to drug treatments? In the search for evidence in healthcare, randomized controlled trials (RCTs) are often required. But must all treatments be measured by the same yardstick? Applying an arm cast or using an assistive device that enables walking does not necessarily require the same level of evidence as more complex internal medicine treatments. Sometimes it should be enough to see with your own eyes and observe improvements, such as a better gait or reduced pain.

In addition to this possibly unfair situation, where a small patient group has to suffer from requirements that are reasonable for the majority but not for all patients, the availability and scope of assistive device prescription varies between different regions in Sweden. This variation raises questions about how guidelines and principles for prioritization in healthcare are interpreted in different regions. Although the overarching principles for priority setting are the same (the principle that all humans have equal value and the same right to care, the principle of need and solidarity, and of the principle of cost-effectiveness), the interpretation and application of these principles can apparently differ. Why is it like that? In some regions, a more comprehensive and individually adapted prescription of devices is given, while other regions are more restrictive. This variation raises important questions about fair and equal care. Providing fair and equal care does not just require following rules. It also requires that we deepen our understanding of how these rules are interpreted and applied in different parts of the country, as well as assess which requirements are reasonable in different practices. It is a complex balancing act between ensuring people’s equal value and right to health while managing resources efficiently. Prescription of assistive devices as a tool to support health and participation is emphasized in the guidelines in Uppsala, but it is important to reflect on how this tool is implemented in practice and what impact it has on people’s quality of life. A common basis in the WHO’s international classification of functional status, disability and health is a good starting point (as in the National Board of Health and Welfare’s support for prescribing assistive devices). But continued discussion and reflection is required to ensure that the patient’s individual health condition is taken into account (not just the patient group), and that devices are prescribed fairly across the country.

In my work, I reflect daily on guidelines and requirements for evidence. I think it is valuable if we who work with the prescription of orthopedic devices reflect on the origin of the guidelines and the requirements for evidence that we use in healthcare. Understanding the context around why the guidelines look the way they do is crucial for us to be able to understand and apply them in our practices. For example, how should we interpret the requirement for evidence when working with prosthetics and orthotics?

I will return to discuss possible answers to these questions in future blog posts. With this post I just wanted to raise the questions.

Written by…

Jennifer Viberg Johansson, Associate Professor in Medical Ethics at Uppsala University’s Centre for Research Ethics & Bioethics.

This post in Swedish

We want to be just

Antimicrobial resistance: bringing the AMR community together

Tuberculosis-Photo-by-CDC-Pixabay
5 December, 2023 / / 3 Comments

According to the WHO, antibiotic resistance is one of the biggest threats to global health, food security and development. Most of the disease burden is in the global south, but drug resistant infections can affect anyone, in any part of the world. Bacteria are always evolving, and antibiotic resistance is a natural process that develops through mutations. We can slow down the process by using antibiotics responsibly, but to save lives, we urgently need new antibiotics to fight the resistant bacteria that already today threaten our health.

There is a dilemma here: development of new antibiotics is a high-risk business, with very low return of investment, and big pharma is leaving the antibiotics field for precisely this reason. Responsible use of antibiotics means saving new drugs for the most severe cases. There are several initiatives filling the gap this creates. One example is the Innovative Medicines Initiative AMR Accelerator programme, with 9 projects working together to fill the pipeline with new antibiotics, and developing tools and infrastructures that can support antibiotics development.

Antimicrobial resistance (AMR) to antibiotics and other anti-infectives is a community problem. Managing it requires a community coming together to find solutions and work together to develop research infrastructures. For example, assessing the effectiveness of new antibiotics requires standardised high-quality infection models that can become available to projects, companies and research groups that are developing new antibacterial treatments. Recently, the AMR Accelerator COMBINE project announced a collaboration with some of the big players in the field: CARB-X, CAIRD, iiCON and Pharmacology Discovery Services. This kind of collaboration allows key actors to come together and share both expertise and data. The COMBINE project is developing a standardised protocol for an in vivo pneumonia model. It will become available to the scientific community, along with a bank of reference strains of Gram-negative bacteria that are clinically relevant, complete with a framework to bridge the gap between preclinical data and clinical outcomes based on mathematical modelling approaches.

The benefit of a standardised model is to support harmonisation. Ideally, data on how effective new antibiotic candidates are should be the same, regardless of the lab that performed the experiments. The point of the collaboration is to improve quality of the COMBINE pneumonia model. But who are they and what will they do? CARB-X (Combating Antibiotic-Resistant Bacteria Biopharmaceutical Accelerator) is a global non-profit partnership that supports early-stage antibacterial research and development. They will help validation of the pneumonia model. CAIRD (Center for Anti-Infective Research and Development) is working to advance anti-infective pharmacology. They are providing a benchmark by back-translation of clinical data. iiCON has a mission to accelerate and support the discovery and development of innovative new anti-infectives, diagnostics, and preventative products. They are supporting the mathematical modelling to ensure optimal dose selection. And finally, Pharmacology Discovery Services, a contract research organisation (CRO) working with preclinical antibacterial development, will supply efficacy data.

At the centre of this is the COMBINE project, which has a coordinating role in the AMR Accelerator: a cluster of public-private partnership projects funded by the Innovative Medicines Initiative (IMI). The AMR Accelerator brings together academia, pharma industry, patient organisations, non-profits and small and medium sized companies. The aim is to develop a robust pipeline of antibiotics and standardised tools that can be used by others in this community, to help in the fight against antimicrobial resistance.

In parallel, the effort to slow down antibiotic resistance continues. For example, Uppsala University coordinates the COMBINE project, and in 2016, the University founded the Uppsala Antibiotic Center, a multidisciplinary centre for research, education, innovation and awareness. The centre runs the AMR Studio podcast, showcasing some of the multidisciplinary research on antimicrobial resistance around the world. The University is also coordinating the ENABLE-2 antibacterial drug discovery platform funded by the Swedish Research Council, with an open call to support programmes in the early stages of discovery and development of new antibiotics.

Our own efforts at the Centre for Research Ethics & Bioethics are more focused on how we as individuals can help slow down the development of antibiotic resistance, and how we can assess the impact of how you frame antibiotic treatments when you ask patients about their preferences. 

Josepine Fernow

Written by…

Josepine Fernow, science communications project manager and coordinator at the Centre for Research Ethics & Bioethics, develops communications strategy for European research projects

Do you want to know more?

EurekAlert! News release: Collaboration to improve the quality of in vivo antibiotics testing, 14 November 2023 https://www.eurekalert.org/news-releases/1007971.

Ancillotti M, Nihlén Fahlquist J, Eriksson S, Individual moral responsibility for antibiotic resistance, Bioethics, 2022;36(1):3-9. https://doi.org/10.1111/bioe.12958

Smith IP, Ancillotti M, de Bekker-Grob EW, Veldwijk J. Does It Matter How You Ask? Assessing the Impact of Failure or Effectiveness Framing on Preferences for Antibiotic Treatments in a Discrete Choice Experiment. Patient Prefer Adherence. 2022;16:2921-2936. https://doi.org/10.2147/PPA.S365624

A shorter version of this post in Swedish

Approaching future issues