The Ethics Blog

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

Category: In the research debate (Page 35 of 37)

Handling mistaken trust when doctors recruit patients as research participants

14 June, 2012 / / 0 Comments

Patients seem more willing to participate in biobank research than the general public. A possible explanation is the doctor-patient relationship. Patients’ trust in health care professionals might help doctors to recruit them as research participants, perhaps making the task too easy.

That trust in doctors can induce a willingness to participate in research seems threatening to the notion of well-informed autonomous decision making. Can sentiments of trust be allowed to play such a prominent role in these processes?

Rather than dismissing trust as a naïve and irrational sentiment, a new article distinguishes between adequate and mistaken trust, and argues that being trusted implies a duty to compensate for mistaken trust.

The article in Bioethics is written by Linus Johnsson at CRB, together with Gert Helgesson, Mats G. Hansson and Stefan Eriksson.

The article discusses tree forms of mistaken trust:

  1. Misplaced trust: Trusted doctors may lack relevant knowledge of biobank research (for example, about the protection of privacy).
  2. Irrational trust: Patients may be mistaken about why they trust the doctor (the doctor may actually be a form of father or mother figure for the patient).
  3. Inappropriate trust: Patients may inappropriately expect doctors always to play the role of therapists and fail to see that doctors sometimes play the role of research representatives who ask patients to contribute to the common good.

The idea in the paper, if I understand it, is that instead of dismissing trust because it might easily be mistaken in these ways, we need to acknowledge that being trusted implies a duty to handle the potentiality of mistaken trust.

Trust is not a one-sided sentiment: it creates responsibilities in the person who is trusted. If doctors take these responsibilities seriously, the relationship of trust immediately begins to look… well, more trustworthy and rational.

How can mistaken forms of trust be compensated for?

Misplaced trust in doctors can be compensated for by developing the relevant expertise (or by dispelling the illusion that one has it). Irrational trust can be compensated for by supporting the patient’s reasoning and moral agency. Inappropriate trust can be compensated for by nurturing a culture with normative expectations that doctors play more than one role; a culture where patients can expect to be asked by the doctor if they want to contribute to the common good.

If patients’ trust is seen in conjunction with these corresponding moral responsibilities of doctors, the relationship of trust can be understood as supporting the patients’ own decision making rather than undermining it.

That, at least, is how I understood this subtle philosophical treatment of trust and its role when patients are recruited by doctors as participants in biobank research.

Pär Segerdahl

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Interview with Kathinka Evers

5 June, 2012 / / 0 Comments

One of my colleagues here at CRB, Kathinka Evers, recently returned from Barcelona, where she participated in the lecture series, The Origins of the Human Mind:

PS: Why did you participate in this series?

KE: I was invited by the Centre for Contemporary Culture to present the rise of neuroethics and my views on informed materialism.

PS: Why were you invited to talk on these issues?

KE: My last book was recently translated into Spanish (Quando la materia se despierta), and it has attracted interest amongst philosophers and neuroscientists in the Spanish speaking world. In that book, I extend a materialist theory of mind, called “informed materialism,” to neuroethical perspectives, discussing, for example, free will, self-conceptions and personal responsibility.

PS: In a previous blog post I commented upon Roger Scruton’s critical attitude to neuroscientific analyses of subjects that traditionally belong to the social and human sciences. What’s your opinion on his criticism?

KE: Contemporary neuroscience can enrich numerous areas of social science. But the reverse is also true. The brain is largely the result of socio-cultural influences. Understanding the brain also involves understanding its embodiment in a social context. The social and neurobiological perspectives dynamically interact in our development of a deeper understanding of the human mind, of consciousness, and of human identity.

PS: Do you mean that the criticism presupposes a one-sided view of the development of neuroscience?

KE: I suspect that the criticism is not well-informed, scientifically, since it fails to take this neuro-cultural symbiosis into account. But it is not uncommon for philosophers to take a rather defensive position against neuroscientific attempts to enter philosophical domains.

PS: Was this tension noticeable at the meeting in Barcelona?

KE: Not really. Rather, the debate focused on how interdisciplinary collaborations have at last achieved what the theoretical isolationism of the twentieth century – when philosophy of mind was purely a priori and empirical brain science refused to study consciousness – failed to achieve: the human brain is finally beginning to understand itself and its own mind.

Kathinka Evers has developed a course in neuroethics and is currently drafting a new book (in English) on brain and mind.

Pär Segerdahl

We transgress disciplinary borders - the Ethics Blog

Research before health care

10 May, 2012 / / 0 Comments

Last week I blogged about the unique status that personal data have in science. Researchers are not interested in the persons behind the data and they have no intention of returning to them; an intention that most other personal data collectors have.

In an age of increasing integrity threats, it is uplifting that biobanks and research registers function like depersonalized scientific spaces where our data can orbit between research projects without tendency to return to us and disturb us.

Scientific aims disentangle us from our data.

Simultaneously with my blogging on this topic, Mats G. Hansson here at CRB wrote a letter to Nature on almost the same subject.

Nature recently reported on recommendations to US biobanks to inform participants about medically relevant incidental findings about their DNA. Mats G. Hansson warns that following such recommendations would be irresponsible.

Genetic risk information is highly complex. It is often unclear what the discovery of a particular genotype variant actually says about an individual’s disease risk. And even if increased disease risk can be proven, further research is needed to ascertain which preventive measures would be efficient.

Research must be allowed run ahead of attempts to provide (what looks like) health care services. Reporting incidental findings that have not been validated “could be putting the cart before the horse,” Hansson warns.

Making sure that biobank research runs ahead of (what looks like) health care services has one further function. It sustains the depersonalized status of personal data in research.

I believe this is important when data protection legislation is about to be sharpened to meet new perceived integrity threats. Research might be unduly affected by the new legislation, especially if the unique status of personal data in research is not clear.

When authorities share personal data, the aim typically is to be able to return to individuals with these data – perhaps in court. It is in the nature of scientific data sharing, however, that the individuals behind the data are uninteresting and are not included in the purpose of the data sharing.

Biobank infrastructure is very much about facilitating scientific data sharing. If these infrastructures are well-built, they can serve as reassuring examples in times where integrity threats are assumed to hide behind every corner.

People could then say: “There actually are depersonalized spaces where personal data can circulate safely without burdening the persons behind the data. They are called biobanks.”

Pär Segerdahl

We participate in debates - the Ethics Blog

Collection of papers brings out neglected aspect of ethics

26 April, 2012 / / 0 Comments

If you wrestle with ethical and legal difficulties associated with genetic science, a recent virtual issue of the Hastings Center Report could be good to think with.

The issue collects earlier material on ethics and genetics. There are pieces about the perils of genetic-specific legislation; about the difficulties of understanding behavioral genetics; about the prospects of personalized medicine; about the meaning of transhumanism; and much else.

Reading the virtual collection, it strikes me that our ethical difficulties surprisingly seldom are of a purely evaluative kind, or about what is morally right or wrong, or about what we ethically should or should not do.

Our ethical challenges are more typically about thinking well; about understanding complex facts properly; about avoiding tempting oversimplifications in our descriptions of reality.

In short, our ethical challenges are very much about facing reality well.

The philosopher Bernard Williams spoke of thick ethical concepts: notions like “courage” that seem to have both evaluative and descriptive content.

I am inclined to say that ethics is “thick” in this sense. Ethics is more often than not about describing reality justly. Ethical challenges are surprisingly often about coming to terms with oversimplified descriptions that prompt premature normative conclusions.

Just consider these two tempting oversimplifications of genetics, which produce an abundance of normative and political conclusions:

  1. The mistaken assumption that if the main source of variation is not genetic, it will be fairly easy to make environmental interventions.
  2. The mistaken assumption that if the primary source of variation is genetic, environmental interventions will be useless.

These assumptions are discussed in Erik Parens’ paper about why talking about behavioral genetics is important and difficult (on page 13).

Even though it is not its purpose, the virtual collection of papers on genetics makes it conspicuous how often our ethical challenges are of a descriptive kind.

Pär Segerdahl

We recommend readings - the Ethics Blog

Interactive conference seeks the value of biobanking

20 April, 2012 / / 0 Comments

I have the privilege of belonging to a group of ethicists and law scholars that currently discuss how to visualize ethical and legal dimensions of biobanking.

We organize an interactive part of the scientific conference program for HandsOn: Biobanks in September. The conference invites participants to Uppsala to explore the values of biobanking and to take part in its interactive exhibition.

Biobanking is hot in medicine. There are hopes that it will substantially improve diagnosis, treatment and prevention of widespread as well as rare diseases. At the same time, however, the route to such values is difficult to survey, and the goals of large biobank investments are not always entirely transparent.

HandsOn: Biobanks is an ambitious attempt to explore and visualize the values of biobanking and the path towards them.

The conference asks: What are the values sought after? How can they be achieved in practice? There are the ethical, legal, scientific and commercial challenges, but there are also challenges for the industry. How can biobanking affect public trust in medical research and industry?

The conference combines keynote presentations with idea labs and educational sessions. The interactive part of the conference where I participate is called “the Route.” It follows the research process from ethical review, consent, sampling, storage and analysis, to end results that hopefully add value in ethics and trust, in clinical practice, in health economy, and in drug development.

If you want to participate in this interactive conference and help us better understand the values of biobanking, or simply are curious to see how we manage to solve the tricky problem of visualizing ethical and legal aspects – keep these dates in mind:

We are in the midst of brainstorming “the Route.” I hope that future blog posts can share with you some of the ethical and legal issues that we want to visualize and make accessible to participant interaction.

Registration is open – hope to see you in September!

Pär Segerdahl

Introspective genomics and the significance of one

28 March, 2012 / / 0 Comments

As a philosopher, I am familiar with the image of the solitary thinker who studies the human mind though introspective study of his own. A recent article in the journal Cell reminds me of that image, but in unexpected “genomic” guise.

To achieve statistical significance, medical researchers typically engage large numbers of research subjects. The paper in Cell, however, has only one research subject: the lead author of the paper, Michael Snyder.

Snyder and colleagues studied how his body functioned molecularly and genetically over a 14-month period. Samples from Snyder were taken on 20 separate occasions. A personal “omics profile” was made by integrating information about his genomic sequence with other molecular patterns gathered from the samples, as these patterns changed over time.

Early results indicated that Snyder was genetically disposed to type 2 diabetes. Strangely enough, the disease began to develop during the course of the study. Snyder could follow in detail how two virus infections and the diabetes developed molecularly and genetically in his body.

Snyder changed his life style to handle his diabetes. When he informed his life-insurance company about the disease, however, his premiums became dramatically more expensive.

The introspective paper illustrates the potential usefulness, as well as the risks, of what has been dubbed “personalized medicine.” Here I want speculate, though, on how this new paradigm in medicine challenges scientific and intellectual ideals.

When philosophers introspectively studied the human mind, they took for granted that what they found within themselves was shared by all humans. The general could be found completely instantiated in the particular.

The particular was for philosophers no more than a mirror of the general. What they saw in the mirror was not the individual mirror (it was intellectually invisible). What they saw in the mirror was a reflection of the general (and only the general was intellectually visible).

That simple image of the relation between the particular and the general was discarded with Darwin’s theory of the origin of species. A species has no essence shared by all individuals. Therefore, to achieve scientific generality about what is human, you cannot rely on one human subject only. You need many subjects, and statistics, to achieve intellectual vison of general facts.

A noteworthy feature of the paper under discussion is that we seem partly to have returned to the era of introspective research. We return to it, however, without the discarded notion of the particular as mirror of the general.

New molecular techniques seem to open up for study of what previously were simply individual cases without significance in themselves. For personalized medicine, each subject unfolds as a universe; as a world full of significant processes.

By studying the “genomic universe” of one person and following it over a period of time time, Snyder and colleagues could discern processes that would have been invisible if they had superimposed data from several distinct research subjects.

This new significance of the particular is fascinating and novel from an intellectual perspective. Has the traditional contempt for the particular case been overcome in personalized medicine?

Speaking personally as a philosopher, I cannot avoid seeing this aspect of personalized medicine as congenial with certain philosophical tendencies.

I am thinking of tendencies to investigate (and compare) particular cases without magnifying them on a wall of philosophical abstraction, as if only the general was intellectually visible. I am thinking of serious attempts to overcome the traditional contempt for the particular case.

We seem to have arrived at a new conception of one and many; at a new conception of the particular case as visible and worthy of study.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Personalized medicine against the diabetes epidemic?

16 March, 2012 / / 0 Comments

When promising technologies see the light, it can be difficult to make sound predictions about their future utility.

Technical breakthroughs that promise to transform society tend to bewitch the mind. Their tremendous potential begs for interpretation by more dreamlike imaginary powers.

When nuclear power was young, for example, the impact this new technology promised to have on society was interpreted by some in the futuristic imagery of nuclear reactors in every car, in every house, and in every kitchen range.

For a short while, every human energy problem seemed to have a nuclear solution.

Today, new gene sequencing technology is beginning to transform how we think about medicine. Personalized medicine is just around the corner. It promises to adapt both prevention and treatment of disease to the individual’s genome.

– How far can this promising new form of medicine be taken?

Two investigators from Albert Einstein College of Medicine recently suggested personalized medicine as a solution to the obesity and diabetes epidemic in the US and other parts of the world… where eating habits call for alarm.

The authors’ argue that costly prevention efforts could be targeted at those individuals whose genomes make them most likely to benefit. Such a personalized approach to the diabetes epidemic is suggested not only for the US, but also for developing countries where diabetes is spreading rapidly and public health resources are scarce.

I’m certain that personalized medicine will be very useful both in prevention and treatment of diabetes. But is it reasonable as a solution to the diabetes epidemic?

I may be wrong. But I cannot avoid seeing the suggestion as an attempt to “find a personalized medicine solution to every human health problem.”

Instead of targeting high risk individuals, and doing so generation after generation while we continue to expose them to the same dangerous eating habits that low-risk individuals adopt (and are enticed to adopt), why not consider efforts (like those of Jamie Oliver) to change globally spreading eating habits?

I admit that my judgment may be wrong and that I fail to understand the potential in this particular case.

What is the answer to the obesity and diabetes epidemic? Revolutionary medicine or a food revolution?

Pär Segerdahl

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After-birth abortion as a logical scale exercise

8 March, 2012 / / 0 Comments

How should one respond when ethicists publish arguments in favor of infanticide?

In the current issue of Journal of Medical Ethics, two philosophers argue that what they call “after-birth abortion” should be permissible in all cases where abortion is (even when the newborn is healthy).

Not surprisingly, soon after BioEdge covered the article, the news spread on the internet… and the authors of the article unfortunately even received death threats.

If you know the spirit of much current academic philosophy, you will not be surprised to know that the authors defended themselves by statements like:

  • “This was a theoretical and academic article.”
  • “I’m not in favour of infanticide. I’m just using logical arguments.”
  • “It was intended for an academic community.”
  • “I don’t think people outside bioethics should learn anything from this article.”

The editor of JME, Julian Savulescu, defended the decision to publish by emphasizing that JME “supports sound rational argument.”

In a similar vein, the philosopher John Harris, who developed basically the same rational considerations in support of infanticide, felt a need to clarify his position. He never defended infanticide as a policy proposal. – What did he do, then?

He engaged in “intellectual discussions.”

What I find remarkable is how some of our most significant human ideals – logic and rationality – seem to have acquired a technical and esoteric meaning for at least some professional philosophers.

Traditionally, if you build on logic and rationality, then your intellectual considerations ought to concern the whole of humanity. Your conclusions deserve to be taken seriously by anyone with an interest in the matter.

The article on after-birth abortion, however, is JUST using logical arguments. It is ONLY presenting a sound rational argument. It is MERELY an intellectual discussion. To me, this sounds like a contradiction in terms.

Moreover, because of this “merely” logical nature of the argument, it concerns no one except a select part of the academic community.

Still, logic and rationality are awe-inspiring ideals with a long human history. Philosophers draw heavily on the prestige of these ideals when they explain the seriousness of their arguments in a free liberal society.

When people in this free society are troubled by the formal reasoning, however, some philosophers seem surprised by this unwelcome attention from “outsiders” and explain that it is only a logical scale exercise, composed years ago by eminent philosophers like Singer, Tooley and Harris, before academic journals were accessible on the internet.

I repeat my question: how should one respond when ethicists publish what they present as “rational arguments” in favor of infanticide?

My answer is that one should take them seriously when they explain that one shouldn’t take their logical conclusions too seriously. Still, there is reason for concern, because the ideals they approach so technically are prestigious notions with a binding character for most of us.

Many persons think they should listen carefully when arguments are logical and rational.

Moreover, JME is not a purely philosophical journal. It is read by people with real and practical concerns. They are probably unaware that many professional philosophers, who seem to be discussing real issues, are only doing logical scale exercises.

This mechanized approach to the task of thinking, presented on days with better self-confidence as the epitome of what it means to be “serious and well-reasoned,” is what ought to concern us. It is problematic even when conclusions are less sensational.

Pär Segerdahl

Following the news - the ethics blog

Researchers’ opinions about communication of results of biobank research

23 February, 2012 / / 0 Comments

One of the ethical difficulties that confront biobank and genomics research concerns the communication of results to participants.

Should biobank participants be given feedback from research? If so, under what conditions?

A recent article in the European Journal of Human Genetics reports a survey of Dutch biobank researchers’ opinions on the issue.

Here are some findings that struck me:

  1. Most of the respondents held the view that participants have to be informed about findings that are relevant at a group level.
  2. There was less agreement, however, about communication of findings that can be relevant for specific individual participants.
  3. About half of the Dutch biobank investigators found it acceptable to not communicate individual results about genetic variation.
  4. Most of the researchers (74%) answered that participants have to be informed about individual results only if there are implications for treatment or prevention.
  5. The respondents generally agreed that participants should not be informed about individual results in return for their contribution. If results are communicated, then, it is not because participation merits rights to individual feedback.
  6. Some worries among respondents concerning communication of individual results were: personal privacy will be harmed (36%); a therapeutic relation will arise (46%); participants’ insurance premiums might increase (66%); information about individual gene variation can frighten participants (81%).

What I find even more interesting, perhaps, is that the researchers’ opinions (in this study) differ from those of the general public and patients (in a comparable study).

When asked similar questions, the general public and patients want individual feedback regardless of the possibility of prevention or treatment… although they seem to change their minds after they have been recruited by biobanks as participants.

As participants, they are less interested in individual feedback than before recruitment.

This change of opinion among participants in the direction of the researchers’ opinions is fascinating. I cannot resist speculating about its cause. Is there such a thing as a “shared experience” of biobanking that shapes expectations and evaluations?

Nevertheless, according to the authors, the gap between the groups is sufficiently wide to complicate the question of how to communicate results to participants.

Pär Segerdahl

ethics needs empirical input - the ethics blog

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