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

Month: November 2022

Data sharing in genomics: proposal for an international Code of Conduct

In genomics, not only individual genes are studied, but the entire genome. Such studies handle and analyse large amounts of data and are becoming increasingly common internationally. One of the challenges is managing the sharing of data between countries around the world. In addition to data protection legislation varying internationally, there are concerns that researchers and research participants from low- and middle-income countries may be exploited or disadvantaged in these exchanges.

Lawyers and bioethicists have therefore called for an international Code of Conduct for data sharing in genomics. A proposal for such a code was recently published in an article in Developing World Bioethics. The article, written by Amal Matar and nine co-authors, describes the process of developing the Code of Conduct and concludes with a nearly 4-page proposal.

The Code of Conduct is intended for researchers and other actors responsible for data management in international genomic research. The code lists ten ethical principles of direct relevance to data sharing. Next, best practices are described in 23 Articles covering seven areas: Data governance system; Data collection; Data storage; Data sharing, transfer and access; Compelled disclosure; Data handling from low- and middle-income countries; Public and community engagement.

Read the article with the proposal for a Code of Conduct here: A proposal for an international Code of Conduct for data sharing in genomics.

Pär Segerdahl

Written by…

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

Matar, A., Hansson, M., Slokenberga, S., Panagiotopoulos, A., Chassang, G., Tzortzatou, O., Pormeister, K., Uhlin, E., Cardone, A., & Beauvais, M. (2022). A proposal for an international Code of Conduct for data sharing in genomics. Developing World Bioethics, 1– 14. https://doi.org/10.1111/dewb.12381

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Patient views on treatment of Parkinson’s disease with embryonic stem cells

Stem cells taken from human embryos very early after fertilization can be grown as embryonic stem cell lines. These embryonic stem cells are called pluripotent, as they can differentiate into virtually all of the body’s cell types (without being able to develop into an individual). The medical interest in embryonic stem cells is related to the possibility of using them to regenerate damaged tissue. One disease one hopes to be able to develop stem cell treatment for is Parkinson’s disease.

In Sweden, it is permitted to use leftover donated embryos from IVF treatment for research purposes. However, not to produce medical products. The path towards possible future treatments is lined with legal and ethical uncertainties. In addition, the moral status of the embryo has been debated for a very long time, without any consensus on the matter being reached.

In this situation, studies of people’s perceptions of the use of human embryonic stem cells for the development of medical treatments become urgent. Recently, the first study of the perceptions of patients, the group that can become recipients, was published. It is an interview study with seventeen patients in Sweden who have Parkinson’s disease. Author is Jennifer Drevin along with six co-authors.

The interviewees were generally positive about using human embryonic stem cells to treat Parkinson’s disease. They did not regard the embryo as a life with human rights, but at the same time they saw the embryo as something special. It was considered that the embryo has great value for the couple who want to become parents and emphasized the importance of the woman’s or the couple’s free and informed consent to donation. As patients, they expressed interest in a treatment that did not limit everyday life through, for example, complicated daily medication. They were interested in better cognitive and communicative abilities and wanted to be more independent: not having to ask family members for support in everyday tasks. The effectiveness of the treatment was considered important and there was concern that stem cell treatment might not be effective enough, or have side effects.

Furthermore, concerns were expressed that donors could be exploited, for example poor and vulnerable groups, and that financial compensation could have negative effects. Allowing donation only of leftover embryos from IVF treatment was considered reassuring, as the main purpose would not be to make money. Finally, there was concern that the pharmaceutical industry would not always prioritize the patient over profit and that expensive stem cell treatments could lead to societal and global injustices. Suspicions that companies will not use embryos ethically were expressed, and some felt that it was more problematic to make a profit on products from embryos than on other medical products. Transparency around the process of developing and using medical stem cell products was considered important.

If you want to see more results, read the study here: Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study.

It can be difficult to draw general conclusions from the study and the summary above reproduces some of the statements in the interviews. We should, among other things, keep in mind that the interviews were conducted with a small number of patients who themselves have the disease and that the study was conducted in Sweden. The authors emphasize that the study can help clinicians and researchers develop treatments in ways that take into account patients’ needs and concerns. A better understanding of people’s attitudes can also contribute to the public debate and support the development of policy and legislation.

Pär Segerdahl

Written by…

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

Drevin, J., Nyholm, D., Widner, H. et al. Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study. BMC Med Ethics 23, 102 (2022). https://doi.org/10.1186/s12910-022-00840-6

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In dialogue with patients

A charming idea about consciousness

Some ideas can have such a charm that you only need to hear them once to immediately feel that they are probably true: “there must be some grain of truth in it.” Conspiracy theories and urban myths probably spread in part because of how they manage to charm susceptible human minds by ringing true. It is said that even some states of illness are spread because the idea of ​​the illness has such a strong impact on many of us. In some cases, we only need to hear about the diagnosis to start showing the symptoms and maybe we also receive the treatment. But even the idea of diseases spread by ideas has charm, so we should be on our guard.

The temptation to fall for the charm of certain ideas naturally also exists in academia. At the same time, philosophy and science are characterized by self-critical examination of ideas that may sound so attractive that we do not notice the lack of examination. As long as the ideas are limited hypotheses that can in principle be tested, it is relatively easy to correct one’s hasty belief in them. But sometimes these charming ideas consist of grand hypotheses about elusive phenomena that no one knows how to test. People can be so convinced by such ideas that they predict that future science just needs to fill in the details. A dangerous rhetoric to get caught up in, which also has its charm.

Last year I wrote a blog post about a theory at the border between science and philosophy that I would like to characterize as both grand and charming. This is not to say that the theory must be false, just that in our time it may sound immediately convincing. The theory is an attempt to explain an elusive “phenomenon” that perplexes science, namely the nature of consciousness. Many feel that if we could explain consciousness on purely scientific grounds, it would be an enormously significant achievement.

The theory claims that consciousness is a certain mathematically defined form of information processing. Associating consciousness with information is timely, we are immediately inclined to listen. What type of information processing would consciousness be? The theory states that consciousness is integrated information. Integration here refers not only to information being stored as in computers, but to all this diversified information being interconnected and forming an organized whole, where all parts are effectively available globally. If I understand the matter correctly, you can say that the integrated information of a system is the amount of generated information that exceeds the information generated by the parts. The more information a system manages to integrate, the more consciousness the system has.

What, then, is so charming about the idea that ​​consciousness is integrated information? Well, the idea might seem to fit with how we experience our conscious lives. At this moment you are experiencing multitudes of different sensory impressions, filled with details of various kinds. Visual impressions are mixed with impressions from the other senses. At the same time, however, these sensory impressions are integrated into a unified experience from a single viewpoint, your own. The mathematical theory of information processing where diversification is combined with integration of information may therefore sound attractive as a theory of consciousness. We may be inclined to think: Perhaps it is because the brain processes information in this integrative way that our conscious lives are characterized by a personal viewpoint and all impressions are organized as an ego-centred subjective whole. Consciousness is integrated information!

It becomes even more enticing when it turns out that the theory, called Integrated Information Theory (IIT), contains a calculable measure (Phi) of the amount of integrated information. If the theory is correct, then one would be able to quantify consciousness and give different systems different Phi for the amount of consciousness. Here the idea becomes charming in yet another way. Because if you want to explain consciousness scientifically, it sounds like a virtue if the theory enables the quantification of how much consciousness a system generates. The desire to explain consciousness scientifically can make us extra receptive to the idea, which is a bit deceptive.

In an article in Behavioral and Brain Sciences, Björn Merker, Kenneth Williford and David Rudrauf examine the theory of consciousness as integrated information. The review is detailed and comprehensive. It is followed up by comments from other researchers, and ends with the authors’ response. What the three authors try to show in the article is that even if the brain does integrate information in the sense of the theory, the identification of consciousness with integrated information is mistaken. What the theory describes is efficient network organization, rather than consciousness. Phi is a measure of network efficiency, not of consciousness. What the authors examine in particular is that charming feature I just mentioned: the theory can seem to “fit” with how we experience our conscious lives from a unified ego-centric viewpoint. It is true that integrated information constitutes a “unity” in the sense that many things are joined in a functionally organized way. But that “unity” is hardly the same “unity” that characterizes consciousness, where the unity is your own point of view on your experiences. Effective networks can hardly be said to have a “viewpoint” from a subjective “ego-centre” just because they integrate information. The identification of features of our conscious lives with the basic concepts of the theory is thus hasty, tempting though it may be.

The authors do not deny that the brain integrates information in accordance with the theory. The theory mathematically describes an efficient way to process information in networks with limited energy resources, something that characterizes the brain, the authors point out. But if consciousness is identified with integrated information, then many other systems that process information in the same efficient way would also be conscious. Not only other biological systems besides the brain, but also artifacts such as some large-scale electrical power grids and social networks. Proponents of the theory seem to accept this, but we have no independent reason to suppose that systems other than the brain would have consciousness. Why then insist that other systems are also conscious? Well, perhaps because one is already attracted by the association between the basic concepts of the theory and the organization of our conscious experiences, as well as by the possibility of quantifying consciousness in different systems. The latter may sound like a scientific virtue. But if the identification is false from the beginning, then the virtue appears rather as a departure from science. The theory might flood the universe with consciousness. At least that is how I understand the gist of ​​the article.

Anyone who feels the allure of the theory that consciousness is integrated information should read the careful examination of the idea: The integrated information theory of consciousness: A case of mistaken identity.

The last word has certainly not been said and even charming ideas can turn out to be true. The problem is that the charm easily becomes the evidence when we are under the influence of the idea. Therefore, I believe that the careful discussion of the theory of consciousness as integrated information is urgent. The article is an excellent example of the importance of self-critical examination in philosophy and science.

Pär Segerdahl

Written by…

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

Merker, B., Williford, K., & Rudrauf, D. (2022). The integrated information theory of consciousness: A case of mistaken identity. Behavioral and Brain Sciences, 45, E41. doi:10.1017/S0140525X21000881

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We like critical thinking

Responses of Italian residents to public health measures during the 2020 pandemic spring

Italy was the first country in Europe to be hit hard by the Covid-19 pandemic. It started mainly in the northern regions, but soon the same public health measures were introduced throughout the country. Commercial and social activities were closed, as were schools and universities. Only points of sale that were deemed necessary were allowed to remain open, such as pharmacies, grocery stores and newsstands. It became forbidden to move outdoors except for certain purposes.

How did people react to the measures? During the late spring and early summer of 2020, an in-depth interview study was conducted with a number of Italian residents of different gender, age, education and home region. The study was recently published as an article by Virginia Romano, Mirko Ancillotti, Deborah Mascalzoni and Roberta Biasiotto. The interviews touched on everyday life during the lockdown as well as perceptions of the public health measures, but also possible priority-setting criteria in intensive care were discussed, as well as views on how the media and information worked.

Several participants described how, after an initial difficulty in understanding and accepting the changes, they soon adapted. Their fear decreased and routines for working from home were established. They began to appreciate increased time with family and a lifestyle with less travel and stress. On the other hand, it was perceived that the public health measures, with their many rules to follow, created a distinction between “us” and “them.” Participants expressed that they began to observe and blame others for not following the rules, while at the same time feeling themselves observed and blamed. This fragmentation was met with disappointment, as the interviewees had hoped that the pandemic would, on the contrary, unite society and increase solidarity and tolerance. However, some experienced just such positive effects. The use of a face mask, for example, was perceived as respectful behaviour towards others.

In general, participants were positive about the public health measures, which were considered necessary to control the pandemic. On the other hand, suspicions were directed at economic interests to maintain productivity. It was perceived that lobbyists were pushing to postpone the lockdown and to speed up the easing of restrictions. Furthermore, it was considered that the pandemic revealed a need to better organize healthcare in Italy. The restrictions also increased the interviewees’ awareness of inequalities in society, for example regarding living space, access to garden and proximity to nature, as well as opportunities to work from home with stable income.

The participants also discussed hypothetical inclusion and exclusion criteria in intensive care, and described their impressions of how information and media functioned during the pandemic spring. The first question was of course difficult to handle for the participants. It was easier to admit that trust in information and the media had decreased. Some participants reported that they developed more critical attitudes towards the sources of information in the media.

If you want more results and the authors’ own discussion, read the article here: Italians locked down: people’s responses to early COVID-19 pandemic public health measures

Pär Segerdahl

Written by…

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

Romano, V., Ancillotti, M., Mascalzoni, D. et al. Italians locked down: people’s responses to early COVID-19 pandemic public health measures. Humanit Soc Sci Commun 9, 342 (2022). https://doi.org/10.1057/s41599-022-01358-3

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Ethics needs empirical input