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

Tag: future prospects (Page 3 of 10)

Artificial intelligence and living consciousness

The Ethics Blog will publish several posts on artificial intelligence in the future. Today, I just want to make a little observation of something remarkable.

The last century was marked by fear of human consciousness. Our mind seemed as mystic as the soul, as superfluous in a scientific age as God. In psychology, behaviorism flourished, which defined psychological words in terms of bodily behavior that could be studied scientifically in the laboratory. Our living consciousness was treated as a relic from bygone superstitious ages.

What is so remarkable about artificial intelligence? Suddenly, one seems to idolize consciousness. One wallows in previously sinful psychological words, at least when one talks about what computers and robots can do. These machines can see and hear; they can think and speak. They can even learn by themselves.

Does this mean that the fear of consciousness has ceased? Hardly, because when artificial intelligence employs psychological words such as seeing and hearing, thinking and understanding, the words cease to be psychological. The idea of computer “learning,” for example, is a technical term that computer experts define in their laboratories.

When artificial intelligence embellishes machines with psychological words, then, one repeats how behaviorism defined mind in terms of something else. Psychological words take on new machine meanings that overshadow the meanings the words have among living human beings.

Remember this next time you wonder if robots might become conscious. The development exhibits fear of consciousness. Therefore, what you are wondering is not if robots can become conscious. You wonder if your own consciousness can be superstition. Remarkable, right?

Pär Segerdahl

Written by…

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

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Neuroethics as foundational

As neuroscience expands, the need for ethical reflection also expands. A new field has emerged, neuroethics, which celebrated its 15th anniversary last year. This was noted in the journal AJOB Neuroscience through an article about the area’s current and future challenges.

In one of the published comments, three researchers from the Human Brain Project and CRB emphasize the importance of basic conceptual analysis in neuroethics. The new field of neuroethics is more than just a kind of ethical mediator between neuroscience and society. Neuroethics can and should contribute to the conceptual self-understanding of neuroscience, according to Arleen Salles, Kathinka Evers and Michele Farisco. Without such self-understanding, the ethical challenges become unclear, sometimes even imaginary.

Foundational conceptual analysis can sound stiff. However, if I understand the authors, it is just the opposite. Conceptual analysis is needed to make concepts agile, when habitual thinking made them stiff. One example is the habitual thinking that facts about the brain can be connected with moral concepts, so that, for example, brain research can explain to us what it “really” means to be morally responsible for our actions. Such habitual thinking about the role of the brain in human life may suggest purely imaginary ethical concerns about the expansion of neuroscience.

Another example the authors give is the external perspective on consciousness in neuroscience. Neuroscience does not approach consciousness from a first-person perspective, but from a third-person perspective. Neuroscience may need to be reminded of this and similar conceptual limitations, to better understand the models that one develops of the brain and human consciousness, and the conclusions that can be drawn from the models.

Conceptual neuroethics is needed to free concepts from intellectual deadlocks arising with the expansion of neuroscience. Thus, neuroethics can contribute to deepening the self-understanding of neuroscience as a science with both theoretical and practical dimensions. At least that is how I understand the spirit of the authors’ comment in AJOB Neuroscience.

Pär Segerdahl

Written by…

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

Emerging Issues Task Force, International Neuroethics Society (2019) Neuroethics at 15: The Current and Future Environment for Neuroethics, AJOB Neuroscience, 10:3, 104-110, DOI: 10.1080/21507740.2019.1632958

Arleen Salles, Kathinka Evers & Michele Farisco (2019) The Need for a Conceptual Expansion of Neuroethics, AJOB Neuroscience, 10:3, 126-128, DOI: 10.1080/21507740.2019.1632972

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Ethical issues when gene editing approaches humanity

Pär SegerdahlGene editing technology, which already is used to develop genetically modified organisms (GMOs), could in the future also be used clinically in humans. One such application could be genetic modification of human embryos, editing genes that would otherwise cause disease.

Of course, the scenario of ​​clinical uses of genetic modification in humans arouses deep concern and heated debate. In addition to questions about efficacy and safety for the people who would be directly affected by the treatments, huge issues are raised about the fate of humanity. When gene editing is performed on germ cells, the changes are passed on to future generations.

What is often overlooked in the debate are ethical questions about the research that would have to precede such clinical applications. In order to develop genetic techniques that are effective and safe for humans, much research is required. One must, for example, test the techniques on human embryos. However, since genetic editing is best done at the time of fertilization (if done on the embryo, not all cells are always modified), a large number of donated gametes are probably required, where the eggs are fertilized in the laboratory to create genetically modified embryos.

Emilia Niemiec and Heidi Carmen Howard, both at CRB, draw attention to these more immediate ethical concerns. They point out that already the research, which precedes clinical applications, must be carefully considered and debated. It raises its own ethical issues.

In a letter to Nature, they highlight the large number of donated eggs that such research is likely to need. Egg donation involves stress and risks for women. Furthermore, the financial compensation they are offered can function as undue incentive for economically disadvantaged women.

Emilia Niemiec and Heidi Carmen Howard write that women who decide on egg donation should be given the opportunity to understand the ethical issues, so that they can make an informed decision and participate in the debate about gene editing. I think they have a good point when they emphasize that many ethical issues are raised already by the research work that would precede clinical applications.

A question I ask myself is how we can communicate with each other about deeply worrying future scenarios. How do we distinguish between image and reality when the anxiety starts a whole chain reaction of frightening images, which seem verified by the anxiety they trigger? How do we cool down this psychological reactivity without quenching the critical mind?

In short, how do we think and talk wisely about urgent future issues?

Pär Segerdahl

Niemiec, E. and Carmen Howard, H. 2019. Include egg donors in CRISPR gene-editing debate. Nature 575: 51

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Broad and deep consent for biobanks

Pär SegerdahlA new article on consent for biobanks manages to surprise me. How? By pointing out what ought to be obvious! If we want to judge what kind of consent works best for biobanks, then we should look at today’s biobanks and not look back at more traditional medical research.

The risks in traditional medical research are mainly physical. Testing new substances and interventions on human subjects can harm them. Potential research participants must therefore be informed about these physical risks, which are unique to each specific project. For this reason, study-specific informed consent is essential in traditional medical research.

In biobank research, however, the risks are primarily informational. Personal data may end up in the wrong hands. The risks here are not so much linked to the specific projects that use material from the biobank. The risks are rather linked to the biobank itself, to how it is governed and controlled. If we want to give biobank participants ethical protection through informed consent, it is information about the biobank they need, not about specific projects.

In the debate on consent for biobanks, study-specific consent figured as a constant requirement for what informed consent must be. However, in the context of biobanks, that requirement risks placing an irrelevant demand on biobanks. Participants will receive the wrong protection! What to do?

Instead of looking back, as if study-specific consent were an absolute norm for medical research, the authors formulate three requirements that are relevant to today’s biobanks. First, potential participants should be informed about relevant risks and benefits. Second, they should be given an opportunity to assess whether research on the biobank material is in line with their own values. Finally, they should be given ethical protection as long as they participate, as well as opportunities to regularly reconsider their participation.

In their comparison of the various forms of consent that have figured in the debate, the authors conclude that broad consent particularly well satisfies the first criterion. Since the risks are not physical but concern the personal data that the biobank stores, information to participants about the biobank itself is more relevant than information about the specific projects that use the services of the biobank. That is what broad consent delivers.

However, the authors argue that broad consent fails to meet the latter two criteria. If potential participants are not informed about specific projects, it becomes difficult to judge whether the biobank material is used according to their values. In addition, over time (biobank material can be saved for decades) participants may even forget that they have provided samples and data to the biobank. This undermines the value of their right to withdraw consent.

Again, what to do? The authors propose a deepened form of broad consent, meant to satisfy all three requirements. First, the information provided to participants should include a clear scope of the research that is allowed to use the biobank material, so that participants can judge whether it is consistent with their own values, and so that future ethical review can assess whether specific projects fall within the scope. Secondly, participants should be regularly informed about the activities of the biobank, as well as reminded of the fact that they still participate and still have a right to withdraw consent.

Ethical reasoning is difficult to summarize. If you want to judge for yourself the authors’ conclusion that broad and deep consent is best when it comes to biobanks, I must refer you to the article.

In this post, I mainly wanted to highlight the originality of the authors’ way of discussing consent: they formulate new relevant criteria to free us from old habits of thought. The obvious is often the most surprising.

Pär Segerdahl

Rasmus Bjerregaard Mikkelsen, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe. Broad consent for biobanks is best – provided it is also deep. BMC Medical Ethics volume 20, Article number: 71 (2019)

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Why should we care about the environment and climate change?

Jessica Nihlén FahlquistTo most of us, it is self-evident that we, as human beings and societies, should care about the environment and climate change. Greta Thunberg has, in a remarkable way, spurred political interest and engagement in climate change. This effort has affected our thoughts and emotions concerning environmental policy. However, when we dig deeper into the philosophical debate, there are different ideas on why we should care about the environment. That is, even though we agree on the need to care, there are various arguments as to why and how we should do that.

First, some scholars argue that we should care about nature because we need it and what we get from it. Nature is crucial to us, for example, because it provides us with water and food as well as air to breathe. Without nature and a good climate, we simply cannot live on planet Earth. Unless we make a substantial effort, our lifestyle will lead to flooding, unmanageable migration and many other enormous challenges. Furthermore, it will affect poorer people and poorer regions the most, making it a crucial issue of justice.

Second, some philosophers argue that it is wrong to base our concern for nature and the environment on the needs of, and effects on, human beings. The anthropocentric assumptions are wrong, they argue. Even without human beings, nature has a value. Its value is intrinsic and not merely instrumental. Proponents of this view often claim that animals have values, and possibly even rights, that should be protected. They disagree on whether it is individual animals, species or even ecosystems that should be protected.

Environmental philosophy consists of many different theoretical schools, and the notions they defend underlie societal debate, explicitly or merely implicitly. Some notions are based on consequentialist ethics and others on deontological ethics. In addition to these two schools of thought, virtue ethics has become influential in the philosophical debate.

Environmental Virtue Ethics holds that it is inadequate to focus on consequences, duties and rights. Furthermore, it is inadequate to focus on rules and legislation. Our respect for and reverence for nature is based on the virtues we ought to develop as human beings. In addition, society should encourage such virtues. Virtue ethics focuses on the character traits, on the dispositions to act, and on the attitudes and emotions that are relevant to a certain area, in this case the environment. It is a richer, more complex theory than the other two mentioned. Even though virtues were first discussed during Antiquity, and the concept might seem obsolete, they are highly relevant in our time. Through reflection, experience and role models, we can all develop virtues crucial to environmental protection and sustainability. The idea is not only that society needs these virtuous people, but that virtuous human beings blossom as individuals when they develop these virtues. They argue that it is wrong to see nature as a commodity belonging to us. Instead, it is argued, we are part of nature and have a special relationship with it. This relationship should be the focus of the debate.

Whereas Environmental Virtue Ethics focuses on ethical virtues, that is, how we should relate to nature through our development into virtuous individuals, a related school of thought focuses on the aesthetical value of nature. It is pointed out that not only does nature have ethical value, but an aesthetical value in virtue of its beauty. We should spend time in nature in order to fully appreciate its aesthetical value.

All of the mentioned schools of thought agree that we should care about the environment and climate. They also hold that sustainability is an important national and global goal. Interestingly, what is beneficial from a sustainability perspective is not necessarily beneficial to climate changes. For instance, nuclear energy could be considered good for climate change due to its marginal emissions, but it is doubtful that it is good for sustainability considering the problems of nuclear waste.

Finally, it is important to include the discussion of moral responsibility. If we agree that it is crucial to save the environment, then the question arises who should take responsibility for materializing this goal. One could argue that individuals bear a personal responsibility to, for example, reduce consumption and use sustainable transportation. However, one could also argue that the greatest share of responsibility should be taken by political institutions, primarily states. In addition, a great share of responsibility might be ascribed to private actors and industries.

We could also ask whether, and to what extent, responsibility is about blame for past events, for example, the western world causing too much carbon emissions in the past. Alternatively, we could focus on what needs to be done now, regardless of causation and blame. According to this line of thinking, the most important question to ask is who has the resources and capacity to make the necessary changes. The questions of responsibility could be conceptualized as questions of individual versus collective responsibility and backward-looking versus forward-looking responsibility.

As we can see, there are many philosophically interesting aspects and discussions concerning the question why we should care about the environment. Hopefully, these discussions can contribute to making the challenges more comprehensible and manageable. Ideally, they can assist in the tremendous work done by Greta Thunberg and others like her so that it can lead to agreement on what needs to be done by individuals, nations and the world.

Jessica Nihlén Fahlquist

Nihlén Fahlquist, J. 2018. Moral Responsibility and Risk in Modern Society – Examples from emerging technologies, public health and environment. Routledge Earth Scan Risk in Society series: London.

Van de Poel, I. Nihlén Fahlquist, J, Doorn, N., Zwart, S, Royakkers L, di Lima, T. 2011. The problem of many hands: climate change as an example. Science and Engineering Ethics.

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

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In-depth critique of dynamic consent

Pär SegerdahlBiobanks are getting bigger and the human biological samples that are stored in the freezers have increasingly long-term utility for research. The samples can be used not only in one study, but also in several different studies. Not only in today’s research, but also in future research. This creates research ethical tensions.

Ethics requires that research participants are informed about and consent to the specific purpose of the project they are asked to participate in. However, when a large-scale biobank is being constructed, such specific information cannot be provided. Future research purposes do not exist yet and cannot be specified. Not until researchers in the future design new studies. How then can biobank research be conducted ethically?

In recent years, a technical solution has been launched: Transform research participants into users of new information and communication technologies (ICT)! Through their computers, tablets or cell phones, they can continuously be informed about new research projects. Sitting in front of their screens, they can give specific consent, or refrain from it, as new projects take shape and researchers apply for access to the biobank’s collected samples. The solution is named dynamic consent.

Dynamic consent certainly seems like an ingenious technical solution to the ethical tensions surrounding today’s increasingly long-term and large-scale biobanks. Moreover, is it not also democratic and politically progressive? Does it not give research participants greater power over the research? Is it not as if all these hundreds of thousands of donors of biological material voted on the direction of future research? Simply by deciding on the use of their own samples.

I recently read an in-depth critique of this belief in a technical solution to the ethical problem. The article is written by Alexandra Soulier at CRB, and focuses on ethical and political consequences of turning research participants into ICT users. Here are some comments that I want to highlight:

The public good that we associate with research is not the sum of isolated individuals’ private preferences in front of their computer screens. Dynamic consent is in tension with the collective and long-term nature of biobank research, and with the notion of the public good which research aims at.

If individual ICT users’ private decisions replace the joint discussions, considerations and functions of ethical committees, the governance of biobanks can be impaired. This, in turn, poses a risk to the participants themselves.

Dynamic consent might transform research participants into seducible audiences. Researchers may want to sell their projects to these audiences through clever communication strategies. Research participants are then treated as manipulable rather than as a rational public to be convinced.

Dynamic consent is not a referendum. Research participants do not vote on research policy issues. They only express their private preferences about their own research participation, project by project, without regard to any research policy implications for the long-term activities of the biobank.

Research participants who do not want to spend years in front of the screen in order to make decisions in real time about their participation in biobank research may feel forced to choose the option (through their technical device) to give exactly the open consent to future research that originally was considered problematic. How can what was considered to be the ethical problem be allowed to be included in the seemingly smart solution?

In summary, the proposed individual-centered technical solution to the ethical challenges of biobank research short-circuits the possibility of jointly taking political and ethical responsibility for these challenges.

I regret that I cannot do justice to Alexandra Soulier’s subtle discussion. I have not read such in-depth criticism in a long time. Read it!

Pär Segerdahl

Soulier, Alexandra. Reconsidering dynamic consent in biobanking: ethical and political consequences of transforming research participants into ICT users. IEEE Technology and Society Magazine, June 2019: 62-70

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Neuroethical reflection in the Human Brain Project

Arleen SallesThe emergence of several national level brain initiatives and the priority given to neuroscientific research make it important to examine the values underpinning the research, and to address the ethical, social, legal, philosophical, and regulatory issues that it raises.

Neuroscientific insights allow us to understand more about the human brain: about its dynamic nature and about its disorders. These insights also provide the basis for potentially manipulating the brain through neurotechnology and pharmacotherapy. Research in neuroscience thus raises multiple concerns: From questions about the ethical significance of natural and engineered neural circuitry, to the issue of how a biological model or a neuroscientific account of brain disease might impact individuals, communities, and societies at large. From how to protect human brain data to how to determine and guard against possible misuses of neuroscientific findings.

Furthermore, the development and applications of neuro-technology to alleviate symptoms or even enhance the human brain raise further concerns, such as their potential impact on the personality, agency, and autonomy of some users. Indeed, some empirical findings appear to even challenge long held conceptions about who we are, the capacity to choose freely, consciousness, and moral responsibility.

Neuroethics is the field of study devoted to examining these critical issues. Unfortunately, it has sometimes been reduced to a subfield of applied ethics understood as a merely procedural approach. However, in our understanding, neuroethics is methodologically much richer. It is concerned not just with using ethical theory to address normative issues about right and wrong, but notably with providing needed conceptual clarification of the relevant neuroscientific and philosophical notions. Only by having conceptual clarity about the challenges presented will we be able to address and adequately manage them.

So understood, neuroethics plays a key role in the Human Brain Project (HBP). The HBP is a European Community Flagship Project of Information and Computing Technologies (ICT). It proposes that to achieve a fuller understanding of the brain, it is necessary to integrate the massive volumes of both already available data and new data coming from labs around the world. Expected outcomes include the creation and operation of an ICT infrastructure for neuroscience and brain related research in medicine and computing. The goal is to achieve a multilevel understanding of the brain (from genes to cognition), its diseases and the effects of drugs (allowing early diagnoses and personalised treatments), and to capture the brain’s computational capabilities.

The HBP is funded by the European Commission in the framework of the EU’s Horizon 2020 research-funding programme. The programme promotes responsible research and innovation (RRI). RRI is generally understood as an interactive process that engages social actors, researchers, and innovators who must be mutually responsive and work towards the ethical permissibility of the relevant research and its products. The goal is to ensure that scientific progress and innovation are responsible and sustainable: that they increase individual and societal flourishing and maximize the common good.

To develop, broaden, and enhance RRI within the project, the HBP established the Ethics and Society subproject. Ethics and Society  is structured around a number of RRI activities such as foresight analysis (to identify at an early stage ethical and social concerns), citizens’ engagement (to promote involvement with different points of view and to strengthen public dialogue), and ethics support (to carry out research in applied ethics and to develop principles and mechanisms that ensure that ethical issues raised by research subprojects are communicated and managed and that HBP researchers comply with ethical codes and legal norms).

Neuroethical reflection plays a key role in this integration of social, scientific, and ethical inquiry. Notably, in the HBP such reflection includes conceptual and philosophical analysis. Insofar as it does, neuroethics aims to offer more than assistance to neuroscientists and social scientists in identifying the social, political, and cultural components of the research. Via conceptual analysis, neuroethics attempts to open a productive space within the HBP for examining the relevant issues, carrying out self-critical analysis, and providing the necessary background to examine potential impacts and issues raised. Neuroethical reflection in the HBP does not exclusively focus on ethical applications and normative guidance. Rather, it takes as a starting point the view that the full range of issues raised by neuroscience cannot be adequately dealt with without also focusing on the construction of knowledge, the meaning of the relevant notions, and the legitimacy of the various interpretations of relevant scientific findings.

At present, the importance of neuroethics is not in question. It is a key concern of the International Brain Initiative, and the different international brain projects are trying to integrate neuroethics into their research in different ways. What continues to be unique to neuroethics in the HBP, however, is its commitment to the idea that making progress in addressing the host of ethical, social, legal, regulatory and philosophical issues raised by brain research to a great extent depends on a conceptual neuroethical approach. It enables constructive critical alertness and a thought-out methodology that can achieve both substantial scientific ground and conceptual clarity.

If you want to read more, see below a list of publications on which this post is based.

Arleen Salles

Delegates eaGNS. Neuroethics Questions to Guide Ethical Research in the International Brain Initiatives. Neuron. 2018.

Evers K, Salles A, Farisco M. Theoretical Framing for Neuroethics: The Need for a Conceptual Aproach. In: Racine E, Aspler, J., editor. Debates About Neuroethics: Springer; 2017.

Salles A, Evers K. Social Neuroscience and Neuroethics: A Fruitful Synergy. In: Ibanez A, Sedeno, L., Garcia, A., editor. Social Neuroscience and Social Science: The Missing Link: Springer; 2017. p. 531-46.

Farisco M, Salles A, Evers K. Neuroethics: A Conceptual Approach. Camb Q Healthc Ethics. 2018;27(4):717-27.

Salles A, Evers K, Farisco M. Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project. Neuroethics. 2018.

Salles A, Bjaalie JG, Evers K, Farisco M, Fothergill BT, Guerrero M, et al. The Human Brain Project: Responsible Brain Research for the Benefit of Society. Neuron. 2019;101(3):380-4.

How about personally optimized treatment?

Pär SegerdahlIt is well known that patients who are asked to participate in cancer trials are tempted by the therapeutic misconception. They believe they are offered a newer and better treatment, when in fact it is about research into an untested treatment. When researchers use genetic tests to develop personalized oncology, even more misconceptions can arise. I will soon explain. But first, what is personalized cancer treatment? Here is an example.

Patients whose tumor is to be operated may undergo preparatory radiation or chemotherapy. Since the preparatory therapy has severe side effects, one wants to avoid giving it to patients whose tumors do not respond to it. The challenge is to distinguish patients who respond to treatment from patients who do not. This is to be accomplished through, among other things, genetic tests on the tumor cells. If this works, you can develop personalized cancer treatment. Patients with the “right” tumor cell genetics receive the preparatory therapy, while patients who, according to the genetic tests, only get the side effects, with no effect on tumor growth, do not receive the therapy.

What are the misconceptions that can arise in patients who are asked to participate in research on personalized cancer treatment? Here are some examples.

Patients who are told that the researchers will do genetic tests can feel a genetic responsibility to participate, considering their children and grandchildren. They believe the test results may be relevant to close relatives, who may have the same disease genes. However, the tests are done on mutated tumor cells and therefore say nothing about inherited cancer risk. A sense of genetic responsibility can thus be triggered by the word “genetics” and create a genetic misconception of research in personalized oncology.

Other misconceptions have to do with the positive language used to describe personalized medicine. One talks about personally “optimized” treatments, about “tailored” treatments, about treatments that are adapted “to the individual.” This language use is not intended to mislead, but it is easy to see how words such as “optimization” can cause patients to believe that research participation means special treatment benefit.

The biggest challenge is perhaps to explain the research purpose behind the positive language. The aim is to be able in the future to distinguish between patients, to “stratify” them, as it less positively is called. Personally optimized care actually means that some patients do not receive certain treatments. This is, of course, reasonable if genetic tests can show that they have no benefit from the treatments but only get the side effects. However, what do cancer patients themselves say about stratified cancer treatment, where some patients are identified as non-responders and therefore are not offered the same treatment as other patients? Finally, do participants understand that “tailored treatment” is a future goal of the study and not something they are offered to try?

Communication with patients recruited for studies in personalized oncology faces many challenges, as patients are tempted by even more misconceptions than just the well-known therapeutic misconception.

Do you want to know more? Read the German study that inspired this blog post.

Pär Segerdahl

Perry, J., Wöhlke, S., Heßling, A.C., Schicktanz, S. 2017. Why take part in personalised cancer research? Patients’ genetic misconception, genetic responsibility and incomprehension of stratification—an empirical‐ethical examination. Eur J Cancer Care. https://doi.org/10.1111/ecc.12563

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Reality surpasses our concepts

Pär SegerdahlAfter thinking for some time about donation of human eggs and embryos to stem cell research, I want to express myself as in the headline. Reality surpasses our concepts of it. This is not as strange as it sounds. For, if our concepts already reflected reality, then no one would need to do research, or to think. Just talking would be sufficient. An endless flood of words could replace all sincere aspirations to understand life and the world.

So what is it about donation to research that makes me want to express myself as in the headline? Everyone knows that blood donation is a gift to patients. This makes blood donation humanly understandable. People want to help fellow human beings in need, even strangers. But what about donation of eggs and embryos to stem cell research? Conceptually, the donation does not go to patients in need, but to researchers. This makes it difficult to understand donation to research. Are we to assume that people feel sorry for researchers and that they therefore want to support them by donating to them? Why do donors support research?

Not only does the concept of “donation to research” make donation difficult to understand from a human point of view. The concept also causes donation to appear suspiciously exploitative. The recipient of the donation is more powerful than the donor is. Moreover, if research results are commercialized, the recipient can make a profit on the work that the donation enables, without the donor receiving any share of it. So not only does literal faith in the concept of “donation to research” make a free will to donate difficult to understand. The donation also looks suspicious. Some argue that we should prevent an increasingly capitalized life science sector from exploiting self-sacrificing donors in this way.

Nevertheless, there are people who freely donate to research. Why? I guess it often is because they use research merely as an intermediary, to be able to give to patients. The patient is equally important in donation to research as in blood donation, although the concept does not reflect this relationship. Let me give an unexpected example of intermediaries.

About one kilogram of bacteria lives in our intestinal tract. Without these bacteria, our bodies would not be able to absorb many of the nutrients in the food we eat. When we swallow the food, these bacteria are in a sense the first diners, and our bodies have to wait patiently until they have finished eating. Even if we know this, we rarely think that we are swallowing food in order to allow bacteria in the stomach to eat first. We eat without being aware of the work that these “intermediaries” in the stomach have to do, in order for the nutrients to become available to the body.

The concept of “eating” does not reflect this relationship between bacteria and us. This is not a shortcoming of the concept. On the contrary, it would be very unpleasant if the concept reflected the bacteria’s work in our guts. Who would then want to say, “Let us sit down and eat”? However, problems arise if we have too much literal faith in concepts. Our vocabulary will then begin to impose limitations on us. Our own language will shrink our otherwise open minds to mental caves, where the words cast shadows on the walls.

Researchers, then, can be seen as intermediaries between donors and patients. I hope I do not upset sensitive minds if I suggest that researchers are the bacteria that we need to make donated material available to future patients’ bodies. That is why people donate to research. They sense, more or less intuitively, that research functions as an intermediary. “Donation to research” is at heart a gift to patients.

It is even more complicated, however, for research alone cannot act as intermediary. The task is too great. For the donation to become a gift to patients, a capitalized life science sector is needed, and a healthcare system, and much else. Moreover, just as the beneficiary function of bacteria in our stomachs requires a diet that regulates the balance between bacteria, this system of intermediaries, extending from donor to patient, needs regulation and monitoring, so that all the actors work harmoniously together. We cannot allow quacks to sell dangerous or inefficient drugs to the sick, and we cannot allow researchers to access donated material in any way they see fit.

Donation to research is a striking example of how reality surpasses our concepts. When we succeed in overcoming our literal faith in concepts – when we discover the way out of the cave and see the light – then donation to research finally becomes humanly understandable. The donor uses research to be able to give to patients. Moreover, donation to research ceases to appear as a suspicious transaction between unequal parties, since the donor uses the relatively powerful direct recipient to give to a more understandable recipient: the patient. Trying to counteract exploitation by paying the donor large sums, or by giving the donor a share of the profit, would tie the donor to the wrong recipient: the one emphasized in the concept.

As mentioned, the donor uses not only research to reach the patient, but a whole system of intermediaries, such as industry, healthcare and governmental control. This system of beneficial societal bacteria is therefore, to some extent, subordinate to the donor’s will to help patients. Or rather, the subordination is an aspect of the relationship, as is bacteria’s subordination to human eating. If we want to, we can always see the opposite aspect as well. Who really eats first and who last? Who really uses whom? The questions lack definitive answers, for the aspects change into one another.

With this post, I wanted to suggest the possibility of a bigger seeing, which we can learn to use wisely in our thinking when we discover how conceptually purified standpoints easily shrink our minds to mental caves.

Pär Segerdahl

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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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