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

Month: June 2021

Dynamic consent: broad and specific at the same time

The challenge of finding an appropriate way to handle informed consent to biobank research is big and has often been discussed here on the Ethics Blog. Personal data and biological samples are collected and saved for a long time to be used in future research, for example, on how genes and the environment interact in various diseases. The informed consent to research is for natural reasons broad, because when collecting data and samples it is not yet possible to specify which future research studies the material will be used in.

An unusually clear and concise article on biobank research presents a committed approach to the possible ethical challenges regarding broad consent. The initial broad consent to research is combined with clearly specified strong governance and oversight mechanisms. The approach is characterized also by continuous communication with the research participants, through which they receive updated information that could not be given at the time of the original consent. This enables participants to stay specifically informed and make autonomous choices about their research participation through time.

The model is called dynamic consent. This form of consent can be viewed as broad and specific at the same time. The article describes experiences from a long-term biobank study in South Tyrol in Italy, the CHRIS study, where dynamic consent is implemented since 2011. The model is now used to initiate the first follow-up phase, where participants are contacted for further sampling and data collection in new studies.

The article on dynamic consent in the CHRIS study is written by Roberta Biasiotto, Peter P. Pramstaller and Deborah Mascalzoni. In addition to describing their experiences of dynamic consent, they also respond to common objections to the model, for example, that participants would be burdened by constant requests for consent or that participants would have an unreasonable influence over research.

I would like to emphasize once again the clarity of the article, which shows great integrity and courage. The authors do not hide behind a facade of technical terminology and jargon, so that one must belong to a certain academic discipline to understand. They write broadly and specifically at the same time, I am inclined to say! This inspires confidence and indicates how sincerely one has approached the ethical challenges of involving and communicating with research participants in the CHRIS study.

Pär Segerdahl

Written by…

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

Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah. 2021. The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication. Part of BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, pp. 277-287. http://dx.doi.org/10.15168/2284-4503-786

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We care about communication

Challenges in end-of-life care of people with severe dementia

In order to improve care, insight is needed into the challenges that one experiences in the daily care work. One way to gain insight is to conduct interview studies with healthcare staff. The analysis of the interviews can provide a well-founded perspective on the challenges, as they are experienced from within the practices.

In Sweden, people with severe dementia usually die in nursing homes. Compared to the specialised palliative care of cancer patients, the general care of people with severe dementia at the end of life is less advanced, with fewer opportunities to relieve pain and other ailments. To gain a clearer insight into the challenges, Emma Lundin and Tove Godskesen conducted an interview study with nurses in various nursing homes in Stockholm. They approached the profession that is largely responsible for relieving pain and other ailments in dying severely demented people.

The content of the interviews was thematically analysed as three types of challenges: communicative, relational and organisational. The communicative challenges have to do with the difficulty of assessing type of pain and pain level in people with severe dementia, as they often cannot understand and answer questions. Assessment becomes particularly difficult if the nurse does not already know the person with dementia and therefore cannot assess the difference between the person’s current and previous behaviour. Communication difficulties also make it difficult to find the right dose of pain medications. In addition, they make it difficult to assess whether the person’s behaviour expresses pain or rather anxiety, which may need other treatment.

Visiting relatives can often help nurses interpret the behaviour of the person with dementia. However, they can also interfere with nurses’ work to relieve pain, since they can have different opinions about the use of, for example, morphine. Some relatives want to increase the dose to be sure that the person with dementia does not suffer from pain, while others are worried that morphine may cause death or create addiction.

The organisational challenges have to do in part with understaffing. The nurses do not have enough time to spend with the demented persons, who sometimes die alone, perhaps without optimal pain relief. Furthermore, there is often a lack of professional competence and experience at the nursing homes regarding palliative care for people with severe dementia: it is a difficult art.

The authors of the article argue that these challenges point to the need for specialist nurses who are trained in palliative care for people with dementia. They further ague that resources and strategies are needed to inform relatives about end-of-life care, and to involve them in decision-making where they can represent the relative. Relatives may need to be informed that increased morphine doses are probably not due to drug addiction. Rather, they are due to the fact that the need for pain relief increases as more and more complications arise near death. If the intention is to relieve symptoms at the end of life, you may end up in a situation where large doses of morphine need to be given to relieve pain, despite the risk to the patient.

If you want a deeper insight into the challenges, read the article in BMC Nursing: End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes.

Pär Segerdahl

Written by…

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

Lundin, E., Godskesen, T.E. End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes. BMC Nurs 20, 48 (2021). https://doi.org/10.1186/s12912-021-00566-7

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We like real-life ethics

To change the changing human

Neuroscience contributes to human self-understanding, but it also raises concerns that it might change humanness, for example, through new neurotechnology that affects the brain so deeply that humans no longer are truly human, or no longer experience themselves as human. Patients who are treated with deep brain stimulation, for example, can state that they feel like robots.

What ethical and legal measures could such a development justify?

Arleen Salles, neuroethicist in the Human Brain Project, argues that the question is premature, since we have not clarified our concept of humanness. The matter is complicated by the fact that there are several concepts of human nature to be concerned about. If we believe that our humanness consists of certain unique abilities that distinguish humans from animals (such as morality), then we tend to dehumanize beings who we believe lack these abilities as “animal like.” If we believe that our humanity consists in certain abilities that distinguish humans from inanimate objects (such as emotions), then we tend to dehumanize beings who we believe lack these abilities as “mechanical.” It is probably in the latter sense that the patients above state that they do not feel human but rather as robots.

After a review of basic features of central philosophical concepts of human nature, Arleen Salles’ reflections take a surprising turn. She presents a concept of humanness that is based on the neuroscientific research that one worries could change our humanness! What is truly surprising is that this concept of humanness to some extent questions the question itself. The concept emphasizes the profound changeability of the human.

What does it mean to worry that neuroscience can change human nature, if human nature is largely characterized its ability to change?

If you follow the Ethics Blog and remember a post about Kathinka Evers’ idea of a neuroscientifically motivated responsibility for human nature, you are already familiar with the dynamic concept of human nature that Arleen Salles presents. In simple terms, it can be said to be a matter of complementing human genetic evolution with an “epigenetic” selective stabilization of synapses, which every human being undergoes during upbringing. These connections between brain cells are not inherited genetically but are selected in the living brain while it interacts with its environments. Language can be assumed to belong to the human abilities that largely develop epigenetically. I have proposed a similar understanding of language in collaboration with two ape language researchers.

Do not assume that this dynamic concept of human nature presupposes that humanness is unstable. As if the slightest gust of wind could disrupt human evolution and change human nature. On the contrary, the language we develop during upbringing probably contributes to stabilizing the many human traits that develop simultaneously. Language probably supports the transmission to new generations of the human forms of life where language has its uses.

Arleen Salles’ reflections are important contributions to the neuroethical discussion about human nature, the brain and neuroscience. In order to take ethical responsibility, we need to clarify our concepts, she emphasizes. We need to consider that humanness develops in three interconnected dimensions. It is about our genetics together with the selective stabilization of synapses in living brains in continuous interaction with social-cultural-linguistic environments. All at the same time!

Arleen Salles’ reflections are published as a chapter in a new anthology, Developments in Neuroethics and Bioethics (Elsevier). I am not sure if the publication will be open access, but hopefully you can find Arleen Salles’ contribution via this link: Humanness: some neuroethical reflections.

The chapter is recommended as an innovative contribution to the understanding of human nature and the question of whether neuroscience can change humanness. The question takes a surprising turn, which suggests we all together have an ongoing responsibility for our changing humanness.

Pär Segerdahl

Written by…

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

Arleen Salles (2021). Humanness: some neuroethical reflections. Developments in Neuroethics and Bioethics. https://doi.org/10.1016/bs.dnb.2021.03.002

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We think about bioethics