Exactly when does a human being actually come into existence?

February 18, 2020

Pär SegerdahlThe one who prepares the food may announce, “The food is ready now!” when the food is ready. However, when exactly is the food actually ready? When the kitchen timer rings? The potatoes are cooked then. Or when the saucepan is removed from the stove? The cooking ends then. Or when the saucepan is emptied of water? The potatoes are separated from the cooking medium then. Or when the potatoes are carried to the table? The food will be available to the guests around the table then. However, is the food actually available for eating before it is on the plate? Should not each guest say, “The food is ready now,” when the food is on the plate? However, if the food is too hot, is it actually ready? Should not someone around the table say when you no longer burn your tongue, “The food is ready now”?

Yes, exactly when is the food actually ready? You probably notice that the question is treacherous. The very asking, “exactly when, actually?” systematically makes every answer wrong, or not exactly right. The question is based on rejecting the answer. It is based on suggesting another, smarter way to answer. Which is not accepted because an even smarter way to answer is suggested. And so on. Questions that systematically reject the answer are not any questions. They can appear to be profound because no ordinary human answer is accepted. They can appear to be at a high intellectual level, because the questioner seems to demand nothing less than the exact and actual truth. Such extremely curious questions are usually called metaphysical.

However, we hardly experience the question about exactly when the food actually is ready as important and deep. We see the trick. The question is like a stubborn teenager who just discovered how to quibble. However, sometimes these verbally treacherous questions can appear on the agenda and be perceived as important to answer. In bioethics, the question about the beginning of a human being has become such a question. Exactly when does a human being actually come into existence?

Why is this question asked in bioethics? The reason is, of course, that there are ethical and legal limits to what medical researchers are permitted to do with human beings. The question of what counts as a human being then acquires significance. When does a fertilized egg become a human? Immediately? After a number of days? The question will determine what researchers are permitted to do with human embryos. Can they harvest stem cells from embryos and destroy them? There is disagreement about this.

When people disagree, they want to convince each other by debating. The issue of the beginning of a human being has been debated for decades. The problem is that the question is just as treacherous as the question about exactly when the food actually is ready. In addition, the apparent depth and inquisitiveness of the question serves as intellectual allurement. We seem to be able to determine exactly who is actually right. The Holy Grail of all debates!

The crucial moment never comes. The Holy Grail is constantly proving to be an illusion, since the question systematically rejects every answer by proposing an even smarter answer, just like the question about food. The question of the beginning of a human being has now reached such levels of cleverness that it cannot be rendered in ordinary human words. Philosophers earn their living as intellectual advocates who give debating clients strategic advice on metaphysical loopholes that will allow them to avoid the opponent’s latest clever argument. Listen to such metaphysical advice to debaters who want to argue that a human being comes into existence exactly at conception and not a day later:

”Given the twinning argument, the conceptionist then faces a choice between perdurantist conceptionism and exdurantist conceptionism, and we argue that, apart from commitments beyond the metaphysics of embryology, they should prefer the latter over the former.”

Do you feel like reading more? If so, read the article and judge for yourself the depth and seriousness of the question. Personally, I wish for more mature ways to deal with bioethical conflicts than through metaphysical advice to stubborn debaters.

Pär Segerdahl

Efird, D, Holland, S. Stages of life: A new metaphysics of conceptionism. Bioethics. 2019; 33: 529– 535. https://doi.org/10.1111/bioe.12556

This post in Swedish

Minding our language - the Ethics Blog


When order creates disorder

February 4, 2020

Pär SegerdahlScientific publications often have more than one author. The authorship order then becomes a sensitive issue for academics, since it counts. A good author position counts as good scientific merit. The authorship order also determines the funding allocation to the author’s university department. A good author position gives more money to the department.

The only problem is that there is no proper authorship order. Different research areas have their own traditions, which change over time. For example, as scientific articles are written jointly by more and more co-authors, the last positions are becoming increasingly important, as they are more visible than the cluster in the middle. Suddenly, you can feel proud to be the second to last among 20 authors.

However, does the expert who assesses your application believe that it is a merit that you are second to last in the author list? Does your university think that such a position should motivate more money to your department than a position in the middle?

When everyone wants to count on an order that does not really exist, it is understandable if administrative efforts are made to regulate authorship order. In an article in the journal Research Ethics, Gert Helgesson exemplifies how a Swedish university introduced its own new rules for the allocation of financial resources based on, among other things, position in the author list.

Gert Helgesson warns that such an administratively imposed order easily creates more disorder. Although it is only meant to regulate the allocation of funds, it can contribute to a local tradition concerning which author positions are considered desirable. The fragmentation increases rather than decreases.

To count or not to count, that is the question. It leads us right into this maze.

Pär Segerdahl

Gert Helgesson. “Authorship order and effects of changing bibliometrics practices.” Research Ethics. First Published January 21, 2020, https://doi.org/10.1177/1747016119898403

This post in Swedish

We want to be just - the Ethics Blog


Clinical cancer trials convey a culture of hope

January 14, 2020

Pär SegerdahlActivities that we may want to keep apart often overlap. An example is cancer research and care. Clinical cancer centers often conduct research and recruit patients as research participants. Such research is important if we want to offer future patients better cancer treatments. However, does this also apply to patients participating in studies? Are they offered better care as research participants?

Together with five co-authors, Tove Godskesen recently published an interview study with clinical physicians carrying out clinical cancer trials in Sweden, Denmark and Finland. The questions were about what ethical challenges the physicians perceived in the care of patients who participate in clinical trials. Does the overlap of care and research create ethical challenges? Although several physicians mentioned challenges, there were tendencies to downplay ethical difficulties and to associate the overlap between research and care with care benefit.

Tove Godskesen sees indications of a culture of hope in clinical cancer trials, where patients and physicians reinforce the image of research participation as an opportunity to access the latest therapy. However, uncertain patients can challenge the picture by asking the physician to affirm that the experimental treatment is as good as the standard treatment. You do not know that. That is why you are doing research!

The authors do not make any claims about whether a culture of hope in clinical cancer trials is good or not. However, they believe that the culture needs to become visible and discussed openly. So that the ethical challenges when care and research overlap do not disappear from sight.

The culture of hope has several aspects that you can read more about in the article. For example, the attitude that it is better to avoid giving patients bad news.

Pär Segerdahl

Tove E Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset and Zandra E Nielsen. The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views. Clinical Ethics. First Published December 30, 2019. https://doi.org/10.1177/1477750919897379

This post in Swedish

We have a clinical perspective : www.ethicsblog.crb.uu.se


Communicating thought provoking research in our common language

December 11, 2019

Pär SegerdahlAfter having been the editor of the Ethics Blog for eight years, I would like to describe the research communication that usually occurs on this blog.

The Ethics Blog wants to avoid the popular scientific style that sometimes occurs in the media, which reports research results on the form, “We have traditionally believed that…, but a recent scientific study shows that…” This is partly because the Ethics Blog is run by a research center in ethics, CRB. Although ethics may involve empirical studies (for example, interviews and surveys), it is not least a matter of thinking. If you, as an ethicist, want to develop new recommendations on informed consent, you must think clearly and thoroughly. However, no matter how rigorously you think, you can never say, “We have traditionally believed that it is ethically important to inform patients about…, but recent philosophical thoughts show that we should avoid doing that.”

Thinking does not provide the authority that empirical research gives. As an ethicist or a philosopher, I cannot report my conclusions as if they were research results. Nor can I invoke “recent thoughts” as evidence. Thoughts give no evidence. Ethicists therefore present their entire thinking on different issues to the critical gaze of readers. They present their conclusions as open suggestions to the reader: “Here is how I honestly think about this issue, can you see it that way too?”

The Ethics Blog therefore avoids merely disseminating research results. Of course, it informs about new findings, but it emphasizes their thought provoking aspects. It chooses to reflect on what is worth thinking about in the research. This allows research communication to work more on equal terms with the reader, since the author and the reader meet in thinking about aspects that make both wonder. Moreover, since each post tries to stand on its own, without invoking intellectual authority (“the ethicists’ most recent thoughts show that…”), the reader can easily question the blogger’s attempts to think independently.

In short: By communicating research in a philosophical spirit, science can meet people on more equal terms than when they are informed about “recent scientific findings.” By focusing on the thought provoking aspects of the research, research communication can avoid a patronizing attitude to the reader. At least that is the ambition of the Ethics Blog.

Another aspect of the research communication at CRB, also beyond the Ethics Blog, is that we want to use our ordinary language as far as possible. Achieving a simple style of writing, however, is not easy! Why are we making this effort, which is almost doomed to fail when it comes to communicating academic research? Why do Anna Holm, Josepine Fernow and I try to communicate research without using strange words?

Of course, we have reflected on our use of language. Not only do we want to reach many different groups: the public, patients and their relatives, healthcare staff, policy makers, researchers, geneticists and more. We also want these groups to understand each other a little better. Our common language accommodates more human agreement than we usually believe.

Moreover, ethics research often highlights the difficulties that different groups have in understanding each other. It can be about patients’ difficulties in understanding genetic risk information, or about geneticists’ difficulties in understanding how patients think about genetic risk. It may be about cancer patients’ difficulties in understanding what it means to participate in clinical trials, or about cancer researchers’ difficulties in understanding how patients think.

If ethics identifies our human difficulties in understanding each other as important ethical problems, then research communication will have a particular responsibility for clarifying things. Otherwise, research communication risks creating more communication difficulties, in addition to those identified by ethics! Ethics itself would become a communication problem. We therefore want to write as clearly and simply as we can, to reach the groups that according to the ethicists often fail to reach each other.

We hope that our communication on thought provoking aspects of ethics research stimulates readers to think for themselves about ethical issues. Everyone can wonder. Non-understanding is actually a source of wisdom, if we dare to admit it.

Pär Segerdahl

This post in Swedish

We care about communication - the Ethics Blog

 

 


Ethical issues when gene editing approaches humanity

December 2, 2019

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

This post in Swedish

Approaching future issues - the Ethics Blog


Broad and deep consent for biobanks

November 18, 2019

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)

This post in Swedish

We challenge habits of thought : the Ethics Blog


In-depth critique of dynamic consent

August 28, 2019

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

This post in Swedish

We like critical thinking : www.ethicsblog.crb.uu.se


%d bloggers like this: