The Ethics Blog

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

Author: Pär Segerdahl (Page 40 of 43)

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

Research with my data, but not about me

3 May, 2012 / / 3 Comments

It is perplexing how the websites of large internet companies continuously adapt to me. It looks like the entire business activity of Amazon was about the musical artists I listened to yesterday.

These companies evidently collect data about what I search out on their websites and automatically adapt to my computer, making the presentation of products as attractive as possible to me.

It is rather annoying to get one’s own internet history in the face like that.

The example illustrates a common property of personal data. When data about me are collected, the data sooner or later return to me: in the form of an adapted website; in the form of a demand to pay tax arrears; or in the form of more expensive insurance premiums.

No one would bother to collect my data if they did not intend to return to me on the basis of the data.

Me, me, me: my data are about me. Sooner or later they come back to me.

There is, however, one brilliant exception from my data’s stubborn tendency to return to me: research. When researchers collect my blood sample or ask questions about my health, they are not interested in my person. My data will not return to me in any form.

Researchers are interested in general patterns that can be discerned in data from thousands of people. If researchers should return to participants, it is to collect further data that (for example) can make the patterns of ageing appear.

Patterns, patterns, patterns: research is about patterns. It is not about any one of us who supplied the data.

I’m therefore inclined to see research registers as categorically distinct from the tax authorities’ data about my incomes. Researchers launch my data up into a depersonalized scientific space. Up there, my data hover weightlessly and my person cannot attract them back to me. They do research with my data. But it is not about me.

I don’t primarily have in mind the fact that researchers code my data so that the connection to me is obscured. I’m thinking of the elementary fact that they collect my data without any intention of returning to me on the basis of the data.

When the integrity of research participants is debated, it is important to keep this unique status of research registers in mind. The purpose of collecting scientific data about me is not at all about me. The purpose “scientific research” disentangles me from my own data.

Biobank research here encounters a difficulty.

Suppose that researchers discover in my blood sample a genetic disposition for a disease that can be prevented if measures are taken in advance. Should they then take down my data from their depersonalized orbit in scientific space, and inform me about the disposition?

It may seem obvious that they should inform me. But it would simultaneously be a departure from how science typically treats personal data without intention of returning to participants on the basis of the data.

How should biobank researchers handle discoveries about individual participants that may save their future health? This important and difficult question will be investigated in the dissertation work of our most recent doctoral student at CRB, Jennifer Viberg.

I’m certain that the Ethics Blog will return many times to Jennifer’s work on incidental findings in biobank research.

Pär Segerdahl

We like challenging questions - 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

UK Biobank invites researchers

13 April, 2012 / / 0 Comments

After many years of data collection, UK Biobank is now open for research on human health and disease.

Like the Swedish biobank investment LifeGene, the British investment is big and prospective. Blood and urine samples were collected from 500 000 participants aged 40-69. Participants also underwent medical examinations and answered questions about health, disease and lifestyle.

The news is that researchers can now start planning projects using these data. Nevertheless, it will probably be a long time before interesting findings are reported…

It may seem cynical, but before UK Biobank can support valuable research, sufficiently many participants must develop various diseases, while others remain healthy. This is what will allow researchers to go back to the original data and identify patterns in how genetic and environmental factors contribute to health and disease.

The value of biobank infrastructure, like UK Biobank, increases with time, as participants develop cancer, depression, diabetes, or heart disease… while others remain in good health.

The fact that biobank infrastructure initially has unclear scientific value and reveals its potential only with time tends to invite skepticism. In the UK as well as in Sweden, investments in biobank infrastructure were interpreted by some as if they concerned unusually obscure research projects, lacking proper scientific goals and procedures.

I think that this is a misunderstanding.

As the recent opening of UK Biobank shows, it is not until now that clearly defined research projects can start being planned. If I am right, however, we might even have to wait somewhat longer…

The data collected between 2006 and 2012 might not support much interesting research until 2022, if I understand the temporality of these research processes. Since the research concerns health and disease in ageing humans, the significance of the research cannot develop any faster than humans grow older.

Rather than holding the initial lack of scientific prosperity against investments like UK Biobank or LifeGene, I am struck by the patience and foresightedness of those who planned and decided about these investments.

Understanding the infrastructural preconditions of biobank research seems to require an attitude to the pace of human life that I thought had become extinct in an age obsessed with short-term agendas.

Sometimes, we have to wait for the future to reveal itself. Only when the time is ripe can the goals and procedures of scientifically interesting biobank projects be defined.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Political ambitions threaten the intellectual integrity of bioethics

3 April, 2012 / / 0 Comments

Is there a need to enhance the way bioethicists discuss enhancement?

ConAshkan Atry defended his PhD thesis on doping in 2013temporary ethical debates on human enhancement sometimes resemble bitter political debates in a city council. Implicit or explicit political agendas are expressed as normative claims and are passed as “moral” arguments because they serve “the right cause.”

Consider, for instance, James Watson who said that “we’ve got to go ahead and not worry whether we’re going to offend some fundamentalist from Tulsa, Oklahoma.”

Another example is James Hughes, who almost ridicules moral worries about enhancement by reducing them to some sort of semi-religious “irrational” technophobia.

Liberal proponents of enhancement stress the value of individual autonomy and the freedom too choose one’s lifestyle. In this perspective, any attempt to prohibit enhancement is considered to encroach upon political liberty, hence as being unjust.

Opponents to enhancement, on the other hand, stressing values such as fairness and social justice, argue that without implementing regulations and proper measures, human enhancement will widen the already existing social divide and create a further gap between those who have the means to enhance themselves and those who don’t.

Thus, what drives both parties in the ethical debate on enhancement are more general political conceptions of what social justice is or ought to be.

Human enhancement admittedly raises many important political questions. Concerns about social justice will certainly continue to play a major part in debates on enhancement. Moreover, the political and the ethical spheres admittedly may, to some extent, overlap.

However, here I wish to raise the question whether political concerns fully exhaust what one may call genuine ethical reflection upon the phenomenon of human enhancement, and to what extent political agendas are to be allowed to determine the direction of ethical debates.

What is worrying is a situation where moral philosophical debates on enhancement reach some kind of deadlock position where bioethicists, acting as mouthpieces for rigid political perspectives, simply block their ears and shout at each other as loud as they can.

Arguably, what we may understand as genuine philosophical reflection also includes hearing the other and, more importantly, critically questioning rigid perspectives which limit the ethical horizon.

Indeed, the phenomenon of human enhancement provides a platform for doing so. Human enhancement will not only transform our lives but also necessitate a continuous re-formulation of key philosophical conceptions such as autonomy, freedom, and human nature.

In this regard, the dimension of unpredictability involved in new scientific and technological innovations challenges intellectual habits and requires development of new ways of doing ethics that would enable us to cope with these rapid transformations and perhaps even to foresee upcoming issues.

Reflecting on enhancement beyond the horizon of political ideologies would be a good starting point in this direction.

Ashkan Atry

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

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

Bioethics is not a community of interests

21 March, 2012 / / 0 Comments

There is a persistent image of bioethics as being in symbiosis with the powerful interests of medical research and the pharmaceutical industry.

Examples that could confirm such suspicions multiply, unfortunately, since pharmaceutical companies have begun to hire bioethicists as consultants. After critique, Glenn McGee, the former editor of the American Journal of Bioethics, recently resigned from a Texas based stem-cell company.

There obviously is a real risk that bioethicists end up representing powerful interests. Everyone who claims to be a bioethicist should be attentive to this question:

  • “Has my thinking become unjust and partial?”

In their academic setting, however, bioethicists not only can but should be driven by this question of truthfulness. You not only can but should weigh a multitude of values and perspectives against each other. You not only can change your mind, but should always consider the need to do so.

Openness strengthens you as a bioethicist.

This would not be the case if you represented a company, an organization, or an authority. In such positions, it is predetermined which views, which interests and which regulations you have a professional duty to look after. If you don’t disseminate the right views or look after the right interests, you are disloyal to your organization and should consider quitting.

It is the other way round with bioethics as an academic activity. If you protect privileged views as if you belonged to a community of interests, if you reason one-dimensionally without allowing opposed perspectives to be seen – then you should consider quitting.

If the functionary of an organization asks, with a pounding heart, “Have I become disloyal?”, the ethicist’s worrying question is, “Have I become loyal?”

If bioethics is vulnerable to accusations of partiality, then, it is because ethical thinking presupposes an openness that typically is absent within communities of interest (and they abound).

This ethical openness, paradoxically, may lay behind some of the accusations that bioethics legitimizes power. For ethical openness hardly is politically radical or ideologically rigid.

Where political organizations protect certain interests and work towards particular goals, ethical thinking has a responsibility to highlight other values that might be undermined if the organization got all the power it hopes to attain.

There seems to be certain tension between ethical openness and political radicalness. Ethics might seem to maintain status quo… from the point of view of various forms of political activism. Ethics might seem to protect power… from the point of view of communities of interest that strive to achieve commendable but limited goals.

There are so many good causes. There are so many groups with commendable interests. Dare I add that even industry and research have values that can deserve our attention?

My own belief is that the open-mindedness with which the best forms of bioethics can be associated – the difficult art of doing justice to many possibilities where there is a temptation to defend a rigid position – can have a profound democratic function.

Voices that strive to be impartial are important.

Pär Segerdahl

We think about bioethics : www.ethicsblog.crb.uu.se

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

We like challenging questions - the ethics blog

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

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