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

Tag: ethics (Page 6 of 6)

Wanted: two researchers to join our team

The Centre for Research Ethics and Bioethics (CRB) is currently recruiting two researchers. We are looking for creative persons who like multi-disciplinary collaboration and are fluent in English.

1. Researcher in health economics (UFV-PA 2012/2684): We are looking for a person with a doctoral degree in health economics with documented skills in Discrete Choice Experiments.

2. Researcher in ethics/biobank/registry research regulations (UFV-PA 2012/2683): We are looking for a person with a doctoral degree in ethics or law, or someone with a doctoral degree in medicine or life sciences with an interest in ethical issues.

Both positions are 2-year appointments, with possible prolongation.

Application deadline: November 29, 2012.

(Job descriptions and information about the applications in the links above.)

Pär Segerdahl

We transgress disciplinary borders - the Ethics Blog

Genetic exceptionalism and unforgivingness

What fuels the tendency to view genetic information as exceptionally private and sensitive? Is information about an individual’s genetic disposition for eye color more sensitive than the fact that he has blue eyes?

In Rethinking Informed Consent in Bioethics, Neil C. Manson and Onora O’Neill make heroic efforts against an avalanche of arguments for genetic exceptionalism. For each argument meant to reveal how uniquely private, how exceptionally sensitive, and how extraordinarily risky genetic information is, Manson and O’Neill find elucidating examples, analogies and comparisons that cool down tendencies to exaggerate genetic information as incomparably dangerous.

What fuels the exceptionalism that Manson and O’Neill fight? They suggest that it has to do with metaphors that tempt us to reify information; temptations that, for various reasons, are intensified when we think about DNA. Once again, their analysis is clarifying.

Another form of genetic exceptionalism strikes me, however; one that has less to do with information. I’m thinking of GMO exceptionalism. For thousands of years, humans improved plants and animals through breeding them. This traditional way of modifying organisms is not without environmental risks. When analogous risks appear with GMO, however, they tend to change meaning and become seen as extraordinary risks, revealing the ineradicable riskiness of genetic manipulation.

Why are we prepared to embrace traditionally modified organisms, TMO, when basically the same risks with GMO make us want to exterminate every genetically manipulated bastard?

Unforgivingness. I believe that this all-too familiar emotional response drives genetic exceptionalism, and many other forms of exceptionalism.

Consider the response of becoming unforgiving. Yesterday we laughed with our friend. Today we learn that he spread rumors about us. His familar smile immediately acquires a different meaning. Yesterday it was shared joy. Today it is an ugly mask hiding an intrinsically untrustworthy individual who must be put in quarantine forever. Every trait of character turns into a defect of character. The whole person becomes an objection; an exception among humans.

Manson and O´Neill are right when they analyze a tendency to reify information in genetic exceptionalism. But I want to suggest that what fuels this tendency, what makes us more than willing to yield to the temptation, is an emotional state of mind that also produces many other forms of exceptionalism.

We need to acknowledge the emotional dimension of philosophical and ethical thinking. We don’t think well when we are unforgiving towards our subject matter. We think dogmatically and unjustly.

In their efforts to think well about genetic information, Manson and O’Neill can be understood as doing forgiveness work.

They calm us down and patiently show us that our friend, although he sometimes does wrong, is not that intrinsically bad character we want to see him as, when we are in our unfortunate unforgiving state of mind.

We are helped towards a state of mind where we can think more freely and justly about the risks and benefits of genetics.

Pär Segerdahl

We want to be just - the Ethics Blog

Ethics before the event

It is easy to be wise after the event. This easily accessible form of wisdom is also a painful accusation: you should have been wise before the event.

If you are extremely sensitive to the pain of these attacks, you might want to become someone who always is “wise before the event.” If you let your life be governed by such an ideal, you’ll become an ethical perfectionist.

Ethical perfectionism may seem like the most demanding form of ethical attitude. If it derives from oversensitivity to the pain of being wise after the event, however, which is ridiculously easy, I’m more doubtful about the value of this attitude.

The ethical perfectionist runs the risk of avoiding life altogether, until even the slightest chance of moral complexity has been eliminated. “Postpone life; I’ve discovered another possible ethical problem!”

My reason for bringing up this subject is that research ethics seems to be in continual danger of succumbing to problematic forms of ethical perfectionism. The dependence on research scandals in the past and the demand to avoid them in the future makes it especially vulnerable to this strange ideal.

Don’t for a moment believe that I recommend living without reflection. But ethical problems must be confronted while we live and develop our activities: “as we go along.” We cannot postpone life until all ethical complexity has been eliminated.

The risk is that we fancy ethical problems without reality and postpone urgent research initiatives on the basis of derailed demands, while we fail to face the real ethical challenges.

Pär Segerdahl

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

Absolute limits of a modern world?

A certain form of ethical thinking would like to draw absolute limits to human activity. The limits are often said to be natural: nature is replacing God as ultimate moral authority.

Nature is what we believe we still can believe in, when we no longer believe in God.

God thus moves into the human embryo. As its nature, as its potential to develop into a complete human being, he continues to lay down new holy commandments.

The irony is that this attempt to formulate nature’s commandments relies on the same forms of human activity that one wants to delimit. Without human embryo research, no one would know of the existence of the embryo: no one could speculate about its “moral status” and derive moral commandments from it.

This dependence on modern research activities threatens the attempt to discover absolute moral authority in nature. Modern research has disassociated itself from the old speculative ambition to stabilize scientific knowledge as a system. Our present notion of “the embryo” will be outdated tomorrow.

Anyone attempting to speculate about the nature of the embryo – inevitably relying on the existence of embryo research – will have to acknowledge the possibility that these speculations already are obsolete.

The changeability of the modern world thus haunts and destabilizes the tendency to find absolute moral authority in nature.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Collection of papers brings out neglected aspect of ethics

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

Political ambitions threaten the intellectual integrity of bioethics

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

Bioethics is not a community of interests

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

After-birth abortion as a logical scale exercise

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

Can infrastructure for biobank research make ethical notions obsolete?

In a comment to what I posted earlier about the decision of the Swedish Data Inspection Board to stop LifeGene, Åke Thörn asks what I mean by saying that

  • “LifeGene represents a new reality in the making.”

Since the question has deep interest, I want to answer it here, in a new post. I will use a simile to explain my intended meaning.

Suppose that rather than discussing biobank ethics, we were playing a form of chess with the strange feature that the chessboard sometimes changes. Squares turn into circles. Or the entire chessboard turns into a rhomb.

These changes of the chessboard make the old rules obsolete. What is “straight” and what is “diagonal” on a chessboard with the shape of a rhomb? The rules need to be reconsidered!

Research ethics and ethical review can be compared to games played on chessboards that sometimes change and require that rules and basic notions are reconsidered. What I meant in my previous post was that LifeGene represents such a basic change of the research ethical chessboard.

How should the “aim” of biobank infrastructure be described, given that infrastructure is not a research project with the aims of individual biobank projects? Do people turn into “research participants” when their ten-year old blood samples are used in new studies?

We cannot always cherish old ethical notions – as if there were no such things as TIME and CHANGE. We sometimes need to rethink rules and basic notions.

I hope these considerations explain my understanding of ethics as sensitive to changing times, and my notion of LifeGene as a “new reality.”

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

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