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

Tag: future prospects (Page 9 of 10)

Genetic compatibility as a new dimension of partnership? (By Julia Inthorn)

JULIA INTHORN is associated researcher and working on genetic risk information and pre-conceptional genetic screeningPreconception genetic carrier tests can inform a person if he/she is carrier of a recessive disease. In case the partner is also a carrier of the same disease, the couple has an increased risk (usually a 1 in 4 risk) to have a child with this disease. Current research in genetics works on developing tests for up to 600 of such recessive inherited diseases. Couples can use this test when planning a pregnancy and check if they are both carriers of the same disease.

In case a couple who are both carriers wants to rule out the risk of having an affected child they have different options: Medical options range from using IVF and preimplantation genetic tests to prenatal test (and the option of abortion in case the child is affected) to using donor gametes. Non-medical options are refraining from having children, adopting children or changing partner.

Preconception genetic carrier screening adds a new dimension to the question of family planning and partnership. In the rhetoric about partnerships – in online tests, horoscopes and questionnaires of online dating services – compatibility of partners is already a great issue connected to questions like matching in taste and interests but also similarity of background.

Genetic (in)compatibility is a new hitherto undiscussed aspect of partnership and marriage. While the idea of testing the genetic compatibility of partners might seem very unromantic to some the question of raising a seriously ill child together poses some important questions: questions of how partners imagine to be parents together, how they envision responsibility for a child and what kind of medical and non medical measures they think are acceptable.

Thinking about integrating genetic information into our concepts of family will challenge our ideas of responsible parenthood. We need not only to make decisions carefully but also to understand how decisions influence possible future plans: Building on a partnership irrespective of genetics leads to other questions and options in family planning than checking genetic compatibility during dating.

Discussions about integrating new genetic information into our concepts of family planning should address what options are most important and how to open up rooms of choices.

Julia Inthorn

Approaching future issues - the Ethics Blog

How does biotechnology become real?

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogSeeing things with our own eyes, not just hearing about them, makes a difference. Words certainly arouse images, but they are our own images of what we never saw.

This is a challenge for the rapid development in biotechnology. Genetically modified organisms are created, in vitro fertilization is practiced, stem cells are grown, and biobanks are constructed.

For most of us this is only hearsay. The words we hear arouse images, but as I said: images of what we never saw with our eyes. When we then respond to new forms of biotechnology, perhaps with anxiety or a sense of unreality, it is often our own images we respond to.

It’s like trying to form an opinion of a person who is hidden in a cloud of rumors. What a difference it makes to actually meet the person, and not only respond to the images that the rumors create within us.

Increased popular scientific efforts don’t automatically solve the problem. On the contrary, relying too much on the visual potential of, for example, computer animation can contribute to the cloud formation. People are stimulated to create even further images of what they never saw.

So how can biotechnology be made real? I believe: by showing what can be shown. Just seeing a genetically modified tomato or a person who underwent stem cell treatment makes biotechnology more real to me than any image of the DNA helix or stem cell differentiation can.

Seeing what can be shown – often practical applications – doesn’t necessarily make me approve of all forms of biotechnology, but I can discuss the technology without being too much distracted by my own cloud of images. I can discuss what became real.

How new forms of biotechnology can become real for the public is discussed in a new article in the Croatian Medical Journal, written by Anna Lydia Svalastog, Joachim Allgaier, Lucia Martinelli, and Srecko Gajovic.

They introduce the notion of Knowledge Landscapes to think more concretely visually about communication with the public about new forms of biotechnology. They emphasize science museums as one arena where biotechnology can be discussed as a reality rather than as an urban myth.

Show what can be shown.

Pär Segerdahl

We like real-life ethics : www.ethicsblog.crb.uu.se

Stress turns ordinary cells into pluripotent stem cells

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogTissues of the body originally form when “naïve” undifferentiated embryonic stem cells differentiate to form the “mature” cells of specific tissues: liver cells, brain cells, skin cells, and so on.

The mature cells are then locked in their differentiated forms, as if they met their fate.

I recently mentioned that Yamanaka and Gurdon were awarded the Nobel Prize in Medicine in 2012 for their surprising findings about dedifferentiation. Through direct genetic modification of nuclear function, mature cells can be reprogrammed to return to naïve stem-cell states. These dedifferentiated cells are pluripotent and can differentiate again and form a variety of mature cell types.

The rejuvenated cells regain the naïve properties of embryonic stem cells!

In January this year, an article published in Nature reported that the genetic reprogramming can be achieved more easily, without direct nuclear manipulation.

All you need to do to dedifferentiate mature cells, according to this article, is to subject them to stress: like an acid environment. Not all but some of the mature cells will be freed from their fate as liver or skin cells and return to naïve pluripotent states.

An easy to read summary can be found in BioEdge, and here is a link to the article:

Using mature cells to create stem cells with properties of embryonic stem cells might thus be easier than expected. In fact, the new findings weren’t even made in a stem-cell laboratory.

The ethical responses to the findings are not as thrilling as the findings. Some welcome the possibility of creating “ethical stem cells” that avoid the controversy about embryonic stem cells. Others see “new ethical issues” on the horizon.

These responses are characteristic of a routine view of ethical assessment as a static one-way process: ethicists assess others. But these findings indicate that processes in the opposite direction are possible as well, since they seem to challenge ethical assumptions about the unique function of the embryo.

I’m tempted to extend Thomas Kuhn’s notion of scientific revolutions to ethics. The new findings could function as anomalies for ethically paradigmatic ways of thinking about the embryo.

As stress turns mature cells into naïve pluripotent stem cells, these findings could stress some ethicists to return to more open-minded states that in the future can differentiate in new and unexpected directions.

Pär Segerdahl

We like challenging findings - The ethics blog

Readings on biobank regulation

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogToday I recommend three short and instructive readings on biobanking:

The European Parliament voted in October 2013 on an amended proposal for a new European Data Protection Regulation. In a newsletter from CBR and BBMRI.se, the legal scholars Jane Reichel and Anna-Sara Lind explain implications for biobank research:

A new law on biobanks entered into force in Finland in September 2013. The law allows broad consent for future research and enables use of already collected samples. It also gives donors a stronger position and better protection of their integrity, Joanna Forsberg and Sirpa Soini write in Nature:

International guidelines on biobank research diverge, not least concerning the specificity of the consent and the use of already collected samples and waiver of consent. These ambiguities are discussed in the European Journal of Epidemiology, in an article by Joanna Forsberg, Mats G. Hansson and Kathinka Evers:

These texts help clarifying the complicated regulatory framework.

Pär Segerdahl

We recommend readings - the Ethics Blog

Some considerations on the creation of artificial life (by Mirko Ancillotti)

mirko-ethicsblogIt is hard to understand and explain why new biotechnologies often are so upsetting. I am inclined to think that many people accord a special value to nature and to what is considered natural. This stance is held in spite of the fact that human beings have purposively modified nature, e.g., through the selection of plants, since they started with agriculture and breeding about 10,000 years ago. It should be admitted that these interferences have highly improved their (our) quality of life. Biotechnologies alter what is naturally occurring and these changes are felt as being particularly dangerous for human beings (directly or through fatal modifications of the environment). In my opinion, what is natural is morally neutral and it would be paradoxical to assume “naturalness” as a guiding principle.

The paper of Douglas, Powell, and Savulescu investigates whether the creation of synthetic life is morally significant and concludes that it is not. As mentioned in the original post, they consider three attempts to establish the moral significance of creating artificial life. I would like to focus on the third attempt, the one claiming uncertainty about the ontological and moral status of synthetic products because of their uncertain functional status.

The ontological status of synthetic products is regarded as being problematic because these products don’t clearly fit the organism-artifact dichotomy. The worry about ontological status is understood by the authors as a worry about functional status. According to the etiological account of functions, those expressed by an organism are the result of evolution and it can be thought that a living entity has an interest in expressing its functions, and be alive.

In what the authors call “Moral Prudentialism,” the moral status of an organism depends on interests and interests depend on functions. An artificial organism may have interests in remaining well-functioning, but what is problematic and gives rise to functional uncertainty is that its functions are not the result of evolution. Instead, they have been purposively designed and built into it by an external rational agent (an artificial organism’s function satisfy human purposes).

I agree with the authors in rejecting the attempt to give moral significance to the creation of artificial life on account of functional (and ontological) uncertainty. The moral assessment of an entity should be based on what the entity actually is and expresses. The etiological account of functions seems to be a poor help in assessing individuals, but I think that it should still be taken into account. Indeed, there is to consider the fact that synthetic organisms have not developed through natural or slightly modified (by humans) selection in an evolutionary equilibrium with other species and ecosystems (naturally occurring organisms are not necessary in harmonious equilibrium, but they are typically at least tolerated without provoking an ecological havoc).

If their genealogy is not considered a central factor in assessing their value or significance, it is nevertheless worth noting that, given the extreme potentialities of synthetic biology to give rise to forms of life completely different from existing ones (possibilities that are much more prominent than in genetic engineering), it seems reasonable to investigate the moral significance of creating artificial life by looking at the whole picture and not at the individual capacities of an organism considered in isolation.

Mirko Ancillotti (MA, Philosophy, CRB)

Human and inhuman

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogThe words “human” and “inhuman” are often used as moral judgments. For example: reasoning is (brilliantly) human; violence is (terribly) inhuman.

Such forms of speech are perfectly in order. Yet, we easily go astray if we use the same forms of speech in attempts to diagnose war and conflict, or the path to peace. (Which is extremely tempting, especially for sensible people.)

The human is purified as rational being. Violence and conflict are understood as results of inhuman interference with human reason. Can such idealized analysis illuminate real problems?

What occasions these thoughts is a review in the Guardian, which in terms of blogging was published ages ago. Stuff worth thinking about was written already in 2006. The British philosopher John N. Gray then reviewed Amartya Sen’s book, Identity and Violence: The Illusion of Destiny.

Sen explains violence between groups as caused by inhuman interference with what is properly human. A proper human makes rational choices in a plurality of group belongings. But ill-disposed propagandists make gullible people think that their human identity already is fixed through a singular group belonging. This short-circuits reason and causes them to blast car bombs and commit genocide against people with other narrowly defined identities.

Without denying the reality of identity-driven violence or the danger of propaganda, Gray questions the innocent intellectualism of Sen’s diagnosis. Sen makes it sound as if people resort to violence because a false theory of human nature was drummed into them. He presents violence as if it were caused by inhuman factors disturbing human nature.

But people hardly lynch each other because of “erroneous beliefs.” And the fear, despair and cruelty of their actions are only too deep-rooted human traits, Gray observes grimly.

It is difficult to think clearly about the human. Perhaps even Gray, in spite of his clear-sightedness, occasionally starts out from a moral delimitation of the human: a more disillusioned one that prefers blaming rather than exalting the human.

(Gray’s own new book, The Silence of Animals, was reviewed last summer by Thomas Nagel.)

Pär Segerdahl

Minding our language - the Ethics Blog

What are absolute borders made of?

I return to the question in my previous post. I was wondering why biotechnological developments repeatedly invite moral responses in terms of borders that shouldn’t be transgressed by humans. (Think of stem cell research using human embryos.)

What is fundamental in these responses? Is it the absolute border? Do people already have stable notions of borders that shouldn’t be transgressed by humans, as part of semi-metaphysical views of life? Do they respond, “Controversial!”, because they deem some new practice to be transgressing a border that already is in place within their view of life?

Or is the notion of the border itself part of the reaction? Is “the absolute border” reactive rather than the source of the reaction?

I’m inclined to say that the “absolute border” arises with and through the reaction. Let’s call it the intellectual part of the reaction. It is how the reaction presents itself as legitimate; it is how the reaction transforms itself into a reason against the new developments.

The notion of an “absolute border” is how the reaction translates itself into the “space of reasons.”

If so, the recurrent reaction is almost bound to misunderstand itself in accordance with my first suggestion: the border will be perceived as basic, and the reaction will present itself as rational verdict: “The absolute border is being transgressed here; therefore, a moral response is in order!”

We must not forget that entire views of life can be reactive. Even when they are beautiful and admirable human achievements, their function can be that of digesting reactions and providing them with meaning.

My conclusion is that if we want to understand these recurrent reactions, we must not be fooled by how they spontaneously translate themselves into “the space of reasons.” We need a practice of back-translation.

We seem bound to repeatedly misunderstand ourselves. Our much praised faculty of understanding easily becomes a faculty of misunderstanding.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Uniquely controversial: why is new biotechnology often so extraordinarily upsetting?

Artificial insemination, genetically modified organisms, and attempts in synthetic biology to create artificial life have this in common: they tend to provoke moral responses in terms of borders that should not be transgressed.

A recent article by Thomas Douglas, Russell Powell, and Julian Savulescu discusses synthetic biology from this point of view:

They analyze arguments that claim that producing artificial organisms from non-living components is morally significant in the sense that it constitutes “the” ultimate transgression of the border that should not be transgressed.

They quite successfully show that the arguments fail. Certainly, producing artificial life can in some cases instantiate attitudes of hubris; it can produce environmental risks; it can encourage problematic reductionism; and it does produce organisms that, since they lack evolutionary history, have unclear moral status within biocentric accounts of moral status.

But: hubris and environmental risks can characterize other endeavors as well, and there is no reason to assume that creating organisms from non-living components is more likely to sustain hubris or pose environmental threats than modifying existing organisms. Moreover, reductionism is rejected by most biologists, and there is no reason to assume that synthetic biology is uniquely capable of encouraging reductionism. Finally, the fact that artificial organisms have unclear moral status in biocentric accounts is irrelevant, since what really matters for moral status “is not origin, but mental capacity.”

What the article less successfully addresses, though, is the question why people repeatedly want to say: this is an extraordinary activity, it transgresses a border that should not be transgressed. For it has been said before, about other forms of biotechnology. Synthetic biology is not unique in this respect.

The sense of extraordinary transgression is translated in the article into an intellectual claim that synthetic biology is the extraordinary transgression. By turning the recurrent sense of extraordinary transgression into such a specific claim about synthetic biology, the article in my view makes it too easy for itself. It fails to address the original sense of extraordinary transgression.

The question in my headline still awaits its answer.

Pär Segerdahl

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

Direct-to-consumer genetic testing: empowering people to hurt themselves?

There are two tempting pictures of the human. One is that we (ideally) are autonomous individuals who make rational choices on the basis of information. The other picture is that our individuality is coded in our DNA.

These pictures work in tandem in the marketing of direct-to-consumer genetic testing. The website of the personal genomics company, 23andMe, features their DNA “spit kit.” On the half-open lid you can read: Welcome to you.

That’s the DNA picture: Your DNA contains the information about you. For 99 dollars and a saliva sample you’ll get to know who you are.

If you click Order now, you encounter the other picture: Knowledge is power. By buying this product, you’ll be empowered to better manage your health and wellness. You’ll get information about diseases you risk developing and diseases you are less likely developing, and can plan your life accordingly.

That’s the autonomy picture: You are the driver of your life. For 99 dollars and a saliva sample, you are empowered as rational decision-maker about your health.

The combination of the two pictures is a powerful marketing campaign that can be followed on YouTube.

The US Food and Drug Administration (FDA) recently sent a warning letter to 23andMe, urging them to immediately stop marketing the test. The device isn’t just any commercial product, but is to be seen as medical technology. This implies certain quality standards:

  • “…we still do not have any assurance that the firm has analytically or clinically validated the PGS for its intended uses…”

FDA also expresses concern about public health consequences if the test doesn’t work reliably. A false positive risk assessment for breast or ovarian cancer “could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist.”

Another concern is that patients who receive assessments of their personal drug responses may begin to self-manage their doses or abandon their therapies.

Genetic tests will no doubt play significant roles in the future. But genetic risk information is tremendously complex and its predictive value difficult to assess. The danger is that the deceptively simple marketing rhetoric of empowering individuals to take charge of their lives currently rather might empower people to hurt themselves.

The Swedish Foundation for Humanities and Social Sciences decided this autumn to support a joint European research program on genetic risk information. The program is led by Mats G. Hansson at CRB. Click the link below for a summary of the program:

FDA’s warning letter to 23andMe underlines the timeliness of the new program. More on this in the future!

Pär Segerdahl

Following the news - the ethics blog

Biobank and registry-based research: our publications

At the Centre for Research Ethics and Bioethics in Uppsala, we have since the 1990s been studying the ethics of biobank and registry-based research.

If you are interested to see what we have done in this field, you can find a recently updated list of our publications by clicking the link below:

The compilation also contains abstracts of the publications.

Pär Segerdahl

Approaching future issues - the Ethics Blog

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