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

Tag: responsibility

An ethical strategy for improving the healthcare of brain-damaged patients

How can we improve the clinical care of brain-damaged patients? Individual clinicians, professional and patient associations, and other relevant stakeholders are struggling with this huge challenge.

A crucial step towards a better treatment of these very fragile patients is the elaboration and adoption of agreed-upon recommendations for their clinical treatment, both in emergency and intensive care settings. These recommendations should cover different aspects, from diagnosis to prognosis and rehabilitation plan. Both Europe and the US have issued relevant guidelines on Disorders of Consciousness (DoCs) in order to make clinical practice consistent and ultimately more beneficial to patients.

Nevertheless, these documents risk becoming ineffective or not having sufficient impact if they are not complemented with a clear strategy for operationalizing them. In other words, it is necessary to develop an adequate translation of the guidelines into actual clinical practice.

In a recent article that I wrote with Arleen Salles, we argue that ethics plays a crucial role in elaborating and implementing this strategy. The application of the guidelines is ethically very relevant, as it can directly impact the patients’ well-being, their right to the best possible care, communication between clinicians and family members, and overall shared decision-making. Failure to apply the guidelines in an ethically sound manner may inadvertently lead to unequal and unfair treatment of certain patients.

To illustrate, both documents recommend integrating behavioural and instrumental approaches to improve the diagnostic accuracy of DoCs (such as vegetative state/unresponsive wakefulness syndrome, minimally conscious state, and cognitive-motor dissociation). This recommendation is commendable, but not easy to follow because of a number of shortcomings and limitations in the actual clinical settings where patients with DoCs are diagnosed and treated. For instance, not all “ordinary,” non-research oriented hospitals have the necessary financial, human, and technical resources to afford the dual approach recommended by the guidelines. The implementation of the guidelines is arguably a complex process, involving several actors at different levels of action (from the administration to the clinical staff, from the finances to the therapy, etc.). Therefore, it is crucial to clearly identify “who is responsible for what” at each level of the implementation process.

For this reason, we propose that a strategy is built up to operationalize the guidelines, based on a clarification of the notion of responsibility. We introduce a Distributed Responsibility Model (DRM), which frames responsibility as multi-level and multi-dimensional. The main tenet of DRM is a shift from an individualistic to a modular understanding of responsibility, where several agents share professional and/or moral obligations across time. Moreover, specific responsibilities are assigned depending on the different areas of activity. In this way, each agent is assigned a specific autonomy in relation to their field of activity, and the mutual interaction between different agents is clearly defined. As a result, DRM promotes trust between the various agents.

Neither the European nor the US guidelines explicitly address the issue of implementation in terms of responsibility. We argue that this is a problem, because in situations of scarce resources and financial and technological constraints, it is important to explicitly conceptualize responsibility as a distributed ethical imperative that involves several actors. This will make it easier to identify possible failures at different levels and to implement adequate corrective action.

In short, we identify three main levels of responsibility: institutional, clinical, and interpersonal. At the institutional level, responsibility refers to the obligations of the relevant institution or organization (such as the hospital or the research centre). At the clinical level, responsibility refers to the obligations of the clinical staff. At the interpersonal level, responsibility refers to the involvement of different stakeholders with individual patients (more specifically, institutions, clinicians, and families/surrogates).

Our proposal in the article is thus to combine these three levels, as formalized in DRM, in order to operationalize the guidelines. This can help reduce the gap between the recommendations and actual clinical practice.

Written by…

Michele Farisco, Postdoc Researcher at Centre for Research Ethics & Bioethics, working in the EU Flagship Human Brain Project.

Farisco, Michele; Salles, Arleen. American and European Guidelines on Disorders of Consciousness: Ethical Challenges of Implementation, Journal of Head Trauma Rehabilitation: April 13, 2022. doi: 10.1097/HTR.0000000000000776

We want solid foundations

Can consumers help counteract antimicrobial resistance?

Antimicrobial resistance (AMR) occurs when microorganisms (bacteria and viruses, etc.) survive treatments with antimicrobial drugs, such as antibiotics. However, the problem is not only caused by unwise use of such drugs on humans. Such drugs are also used on a large scale in animals in food production, which is a significant cause of AMR.

In an article in the journal Frontiers in Sustainable Food Systems, Mirko Ancillotti and three co-authors discuss the possibility that food consumers can contribute to counteracting AMR. This is a specific possibility that they argue is often overlooked when addressing the general public.

A difficulty that arises when AMR needs to be handled by several actors, such as authorities, food producers, consumers and retailers, is that the actors transfer the responsibility to the others. Consumers can claim that they would buy antibiotic-smart goods if they were offered in stores, while retailers can claim that they would sell such goods if consumers demanded them. Both parties can also blame how, for example, the market or legislation governs them. Another problem is that if one actor, for example the authorities, takes great responsibility, other actors feel less or no responsibility.

The authors of the article propose that one way out of the difficulty could be to influence consumers to take individual responsibility for AMR. Mirko Ancillotti has previously found evidence that people care about antibiotic resistance. Perhaps a combination of social pressure and empowerment could engage consumers to individually act more wisely from an AMR perspective?

The authors make comparisons with the climate movement and suggest digital innovations in stores and online, which can inform, exert pressure and support AMR-smarter food choices. One example could be apps that help consumers see their purchasing pattern, suggest product alternatives, and inform about what is gained from an AMR perspective by choosing the alternative.

Read the article with its constructive proposal to engage consumers against antimicrobial resistance: The Status Quo Problem and the Role of Consumers Against Antimicrobial Resistance.

Pär Segerdahl

Written by…

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

Ancillotti, Mirko; Nilsson, Elin; Nordvall, Anna-Carin; Oljans, Emma. The Status Quo Problem and the Role of Consumers Against Antimicrobial Resistance. Frontiers in Sustainable Food Systems, 2022.

This post in Swedish

Approaching future issues

Genetic risk entails genetic responsibility

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

This post in Swedish

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Trust, responsibility and the Volkswagen scandal

Jessica Nihlén FahlquistVolkswagen’s cheating with carbon emissions attracted a lot of attention this autumn. It has been suggested that the cheating will lead to a decrease in trust for the company, but also for the industry at large. That is probably true. But, we need to reflect on the value of trust, what it is and why it is needed. Is trust a means or a result?

It would seem that trust has a strong instrumental value since it is usually discussed in business-related contexts. Volkswagen allegedly needs people’s trust to avoid losing money. If customers abandon the brand due to distrust, fewer cars will be sold.

This discussion potentially hides the real issue. Trust is not merely a means to create or maintain a brand name, or to make sure that money keeps coming in. Trust is the result of ethically responsible behaviour. The only companies that deserve our trust are the ones that behave responsibly. Trust, in this sense, is closely related to responsibility.

What is responsibility then? One important distinction to make is the one between backward-looking and forward-looking responsibility. We are now looking for the one who caused the problem, who is to blame and therefore responsible for what happened. But responsibility is not only about blame. It is also a matter of looking ahead, preventing wrongful actions in the future and doing one’s utmost to make sure the organisation, of which one is a member, behaves responsibly.

One problem in our time is that so many activities take place in such large contexts. Organisations are global and complex and it is hard to pinpoint who is responsible for what. All the individuals involved only do a small part, like cogs in a wheel. When a gigantic actor like Volkswagen causes damage to health or the environment, it is almost impossible to know who caused what and who should have acted otherwise. In order to avoid this, we need individuals who take responsibility and feel responsible. We should not conceive of people as powerless cogs in a wheel. The only companies who deserve our trust are the ones in which individuals at all levels take responsibility.

What is most important now is not that the company regains trust. Instead, we should demand that the individuals at Volkswagen raise their ethical awareness and start acting responsibly towards people, society and the environment. If they do that, trust will eventually be a result of their responsible behaviour.

Jessica Nihlén Fahlquist

(This text was originally published in Swedish, in the magazine, Unionen, industri och teknik, December 2015.)

Further reading:

Nihlén Fahlquist, J. 2015. “Responsibility as a virtue and the problem of many hands,” In: Ibo van de Poel, Lambèr Royakkers, Sjoerd Zwart. Moral Responsibility in Innovation Networks. Routledge.

Nihlén Fahlquist J. 2006. “Responsibility ascriptions and Vision Zero,” Accident Analysis and Prevention 38, pp. 1113-1118.

Van de Poel, I. and Nihlén Fahlquist J. 2012. “Risk and responsibility.” In: Sabine Roeser, Rafaela Hillerbrand, Martin Peterson, Per Sandin Handbook of Risk Theory, 2012, Springer, Dordrecht.

Nihlén Fahlquist J. 2009. “Moral responsibility for environmental problems – individual or institutional?” Journal of Agricultural and Environmental Ethics 22(2), pp. 109-124.

This post in Swedish

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