Idling normativity

August 17, 2015

Pär SegerdahlI recently wrote about the tendency of ethical practices to lose their vital functions and degenerate into empty rituals. Why is there such a tendency?

The tendency is not unique to ethics: it is everywhere.

Suddenly, patients and students are to be called “customers” and be treated “as” customers. This can be perceived as an imposed language, as empty rituals that demean all concerned.

Since the edict to treat a variety of relationships “as” customer relationships can be experienced as demeaning, expanding customer normativity has become a problem even where it has its rightful place: in our stores, where we really are customers.

A retail chain – I will not say which – is now instructing their employees to call their customers “guests” and to treat them “as” guests!

The retail chain “solves” the problem of expanding customer normativity by decreeing guest normativity at precisely the place where customer normativity should work authentically.

I don’t know why we so easily go astray in our own forms of normativity, but I have a name for the phenomenon: idling normativity.

Pär Segerdahl

Minding our language - the Ethics Blog

Direct to consumer genetic tests: soon history?

November 5, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogMore and more companies are selling genetic tests directly to consumers. You don’t need a prescription. Just go online and order a test and you’ll get a cotton swab with which you scrape the inside of your cheek.

You then send the cotton swab to a laboratory and await the answer: What do your genes have to say about your disease risks?

These tests may seem harmless. It’s only a bit of information. No one can be harmed by some information, it may seem.

But the information is sensitive and can have consequences. For example, the test can provide information about genetic predispositions that you can transfer to your children. Paternity can be determined. You can get information that you are at risk for a certain form of cancer or can suffer side effects from the drug that your doctor prescribed. In addition, information about risk of disease can cause you to begin to exhibit symptoms prematurely!

Are the tests reliable? How should the information be interpreted in your case? What should you do with it? – Can one really market such tests directly to consumers as any commercial product?

No, it looks like it soon will be impossible. The US Food and Drug Administration (FDA) recently informed a number of companies that sell genetic tests directly to consumers that the tests will from now on be treated as medical devices. Such devices must meet specific quality requirements and be approved product by product.

Also in Europe a change is underway, going even further. The European Parliament is proposing a regulation that would more or less ban selling genetic tests directly to consumers.

This EU proposal is described and discussed in an article in Science, written by Louiza Kalokairinou, Heidi Howard (from CRB) and Pascal Borry:

From having been regarded as harmless, the authors write, genetic tests are now proposed to be classified as medical devices on risk level C (on a scale from A to D). In addition, a medical prescription will be required to get a genetic test, and the test must be ordered by a physician. Genetic counseling must also be given.

Genetic tests are here to stay, but presumably in a different context than today. The proposed EU regulation requires a medical context for genetic testing, the authors write: a patient-doctor relationship.

The article ends asking: Will doctors’ waiting rooms soon to be filled by people who want prescriptions for genetic tests? Can doctors keep up with the rapid development of the field, which is required to interpret new genetic tests and assess how these can benefit individual users?

Whereupon I ask: If it is unclear if even doctors can manage the genetic tests, how could one have assumed that individual consumers could do it?

Pär Segerdahl

Approaching future issues - the Ethics Blog

Conversations with seemingly unconscious patients

September 23, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogResearch and technology changes us: changes the way we live, speak and think. One area of ​​research that will change us in the future is brain research. Here are some remarkable discoveries about some seemingly unconscious patients; discoveries that we still don’t know how to make intelligible or relate to.

A young woman survived a car accident but got such serious injuries that she was judged to be in a vegetative state, without consciousness. When sentences were spoken to her and her neural responses were measured through fMRI, however, it was discovered that her brain responded equivalently to conscious control subjects’ brains. Was she conscious although she appeared to be in a coma?

To get more clarity the research team asked the woman to perform two different mental tasks. The first task was to imagine that she was playing tennis; the other that she visited her house. Once again the measured brain activation was equivalent to that of the conscious control subjects.

She is not the only case. Similar responses have been measured in other patients who according to international guidelines were unconscious. Some have learned to respond appropriately to yes/no questions, such as, “Is your mother’s name Yolande?” They respond by mentally performing different tasks – let’s say, imagine squeezing their right hand for “yes” and moving all their toes for “no.” Their neural responses are then measured.

There is already technology that connects brain and computer. People learn to use these “neuro-prosthetics” without muscle use. This raises the question if in the future one may be able to communicate with some patients who today would be diagnosed as unconscious.

– Should one then begin to ask these patients about informed consent for different treatments?

Here at the CRB researchers are working with such neuro-ethical issues within a big European research effort: the Human Brain Project. Within this project, Kathinka Evers leads the work on ethical and societal implications of brain research, and Michele Farisco writes his (second) thesis in the project, supervised by Kathinka.

Michele Farisco’s thesis deals with disorders of consciousness. I just read an exciting book chapter that Michele authored with Kathinka and Steven Laureys (one of neuro-scientists in the field):

They present developments in the field and discuss the possibility of informed consent from some seemingly unconscious patients. They point out that informed consent has meaning only if there is a relationship between doctor/researcher and patient, which requires communication. This condition may be met if the technology evolves and people learn to use it.

But it is still unclear, they argue, whether all requirements for informed consent are satisfied. In order to give informed consent, patients must understand what they agree to. This is usually checked by asking patients to describe with their own words what the doctor/researcher communicated. This cannot be done through yes/no-communication via neuroimaging. Furthermore, the patient must understand that the information applies to him or her at a certain time, and it is unclear if these patients, who are detached from the course of everyday life and have suffered serious brain injury, have that understanding. Finally, the patient must be emotionally able to evaluate different alternatives. Also this condition is unclear.

It may seem early to discuss ethical issues related to discoveries that we don’t even know how to make intelligible. I think on the contrary that it can pave the way for emerging intelligibility. A personal reflection explains what I mean.

It is tempting to think that neuroscience must first determine whether the patients above are unconscious or not, by answering “the big question” how consciousness arises and becomes disturbed or inhibited in the brain. Only then can we understand these remarkable discoveries, and only then can practical applications and ethical implications be developed.

My guess is that practical technological applications, and human responses to their use, rather are venues for the intelligibility that is required for further scientific development. A brain does not give consent, but perhaps a seemingly unconscious patient with neuro-prosthesis. How future technology supported communication with such patients takes shape – how it works in practice and changes what we meaningfully can do, say and think – will guide future research. It is on this science-and-technology supported playing field that we might be able to ask and determine what we thought neuroscience had to determine beforehand, and on its own, by answering a “big question.”

After all, isn’t it on this playing field that we now begin to ask if some seemingly unconscious patients are conscious?

Ethics does not always run behind research, developing its “implications.” Perhaps neuro-ethics and neuroscience walk hand in hand. Perhaps neuroscience needs neuro-ethics.

Pär Segerdahl

In dialogue with patients

The voices of telenursing

September 9, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogI believe that many who call a telenurse are wondering which voice they will encounter. Will it be considerate or dismissive? Male or female? Young or old? Sympathetic or unsympathetic?

I guess also the telenurse is wondering which voice he or (usually) she will encounter when answering the call. Will it be self-assertive or self-denying? Male or female? Young or old? Eloquent or stumbling?

This uncertainty is revealing. Telephone counseling has sensitive dimensions that influence how the conversation develops and what it leads to. There is no direct connection between how you feel and the advice you get, for it will also depend on how the voices take shape and come together in conversation. We know this instinctively before the conversation started. Therefore we wonder, perhaps with some dread: what will the other voice be like?

This is a challenge for telenursing. The aim is to make health care more effective, accessible and safe, and there is potential to challenge inequities in health care. Meanwhile, gender, age, ethnicity and socioeconomic status will be expressed in voices that respond to each other largely beyond our conscious control.

Therefore, it is an important research task to study telenursing and raise awareness of what is happening in the conversations. One such study from Uppsala University was recently published:

The study is done by Roya Hakimnia, together with Inger K. Holmström, Marianne Carlsson and Anna T. Höglund. They develop a qualitative analysis of 20 calls to Swedish Healthcare Direct, and identify a number of relevant types of calls. One type of call, for example, is when the telenurse speaks more as a gatekeeper than as a nurse. Another is when gender norms are central and have consequences, as when a man calls reluctantly and doesn’t get the advice he might need. Another type of call is distinctly medical and avoids the life situation of the caller, although it might be what is relevant.

Portions of several conversations are included in the article. One can thus read transcripts of specific calls, and analyses of them, side by side. This I found quite excellent. The analyses help one to see and to think further about what is happening in the conversations, while the conversations help one to see the point of the analyses.

The study is in my opinion a fine example of how qualitative research can highlight sensitive processes that we normally do not survey or control. Sometimes we need to look more closely at the individual cases.

Pär Segerdahl

In dialogue with patients

Nurses’ experiences of do not resuscitate orders

June 18, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogWhen a critically ill patient has such a poor prognosis that resuscitation would be of no use, doctors can write a so-called do not resuscitate order. The decision means that if the heart stops beating, the medical team should not, as otherwise, perform coronary pulmonary rescue.

The decision is made by the physician on the basis of a medical assessment. But the decision affects the patient, the relatives, and the nurses who care for the patient and family.

Mona Pettersson at CRB is writing her thesis on the decision not to resuscitate. In a study recently published in Nursing Ethics, she interviewed 15 nurses about their experiences of do not resuscitate orders at Swedish hematology and oncology departments.

The nurses describe problems that may arise. The nurses have daily close contact with patients and notice when they are no longer responding to treatment. The nurses can then expect a do not resuscitate order, which may not always come. The decision may be taken by the doctor on the spot, when a resuscitation attempt already started. Sometimes decisions are unclear or contradictory: decisions are taken while continuing to give the patient full treatment. And if the patient and family are not informed about the decision, or the nurse is not present when the information is given, it becomes difficult for the nurse to care for the patient and family – for example, to answer questions afterwards.

Mona Pettersson concludes that nurses need clear, well-documented orders. Patients and families need to be informed and involved in the decisions, and nurses should be present when the information is provided. Finally, regular ethical discussions between nurses and doctors are needed, to understand each other and the different perspectives on do not resuscitate orders. Here you find a link to the article:

Co-authors are Mariann Hedström and Anna Höglund.

Before I finish this post, I want to mention a recently made compilation of our research on nursing ethics:

There you will find our publications with abstracts and links to the publications that are available online.

Pär Segerdahl

We have a clinical perspective :

Why do cancer patients participate in clinical trials?

February 5, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogHearsay and good intentions won’t suffice. If a new treatment is chosen for a patient with cancer, one must first have seen that the treatment is at least as efficient as the conventional treatment. And one must have looked at side effects and right dosages.

Seeing this, however, presupposes that some patients agree to test the treatment… before one has clearly seen its efficacy. This is done in so-called clinical trials arranged in phases where first side effects and dosages are studied, and finally efficacy is compared to conventional treatment.

This gives rise to questions: Why are some patients prepared not to be patients on the same conditions as other patients? Why are they prepared to test a treatment one hasn’t yet seen is most efficient?

Do they understand what they agree to participate in? Since they participate in a study of a new treatment, do they understand that in order to see its efficacy, some in the group will be given just the conventional treatment?

Tove Godskesen, PhD student at CRB, noticed that such questions were relatively unexamined in the context of Swedish clinical cancer trials. She therefore did a survey study with cancer patients in several Swedish phase 3 clinical trials (where experimental and conventional treatments are compared).

Godskesen’s study (done together with Mats G. Hansson, Peter Nygren, Karin Nordin and Ulrik Kihlbom) was recently published online in the European Journal of Cancer Care:

The article contains many interesting findings. For example, patients-participants seemed generally to have understood the information about the “seeing” that they were willing to support by not being patients quite the same way as others.

Most important and salient, however, was that patients have two main motives for participating. They hope for a cure; and they wish to help future patients.

I would like to say: Patients hope that they will be given the new treatment already and that it will turn out to be more efficient than the conventional one. And they want to help future patients get the treatment that one has seen is most efficient.

Sight and future, patient role and research participant role, hope and altruism, in complex association.

Pär Segerdahl

We have a clinical perspective :

Dissertation on trust in biobank research

March 6, 2013

On Saturday, March 9, Linus Johnsson at CRB defends his dissertation:

The dissertation is based on four studies. The first two scrutinize empirical evidence concerning public trust in biobank research. They indicate that people do trust biobank researchers, at least in Sweden.

Such findings might give rise to complacency. The ethical regulatory system obviously works and promotes trust. Biobankers can relax.

The third study, however, is a conceptual investigation showing such a reaction to be mistaken. Trust creates obligations in the person who is being trusted. If a doctor collects samples from patients and suspects that their trust is mistaken in one way or another, the doctor has an obligation to handle that mistaken trust appropriately. (I’ve written about this study on The Ethics Blog.)

Public trust doesn’t merely indicate trustworthiness. It creates a moral demand. The proper response to public trust in biobank researchers, then, is taking increased moral responsibility.

The fourth study strives in the same direction. It critiques prevalent faith that trustworthiness is best quaranteed by an extensive ethical regulatory system (ethical review, guidelines, etc.). The opposite may very well be the case. Such a system may foster moral complacency and failure among researchers to deal with ethical issues that are not addressed by the system.

If I interpret Linus Johnsson right, the current widespread trust in ethical regulatory systems is mistaken, and his dissertation is an attempt to take responsibility for that mistaken trust by intellectually highlighting and critiquing it.

As this brief summary shows, the dissertation is original and presents some very thought-provoking results, empirically and above all conceptually. For more information about the dissertation, see News from Uppsala University.

If you are in Sweden and want to visit the public examination, it takes place in Auditorium Minus, Museum Gustavianum, Uppsala, Saturday, March 9, 2013, at 09:15.

Pär Segerdahl

We recommend readings - the Ethics Blog

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