The Ethics Blog

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

Tag: genetic tests (Page 1 of 2)

Autonomous together

Autonomy is such a cherished concept in ethics that I hardly dare to write about it. The fact that the concept cherishes the individual does not make my task any easier. The slightest error in my use of the term, and I risk being identified as an enemy perhaps not of the people but of […]

Learning from the difficulties

In popular scientific literature, research can sometimes appear deceptively simple: “In the past, people believed that … But when researchers looked more closely, they found that …” It may seem as if researchers need not do much more than visit archives or laboratories. There, they take a closer look at things and discover amazing results. […]

How about personally optimized treatment?

It is well known that patients who are asked to participate in cancer trials are tempted by the therapeutic misconception. They believe they are offered a newer and better treatment, when in fact it is about research into an untested treatment. When researchers use genetic tests to develop personalized oncology, even more misconceptions can arise. […]

Genetic risk information: lines and stage directions

Outside of their practical contexts, simple messages quickly lose their meaning. Recall what it is like to find an old Post-it Note: “Don’t forget the disk!” – What disk? The risk is great that we invent a context. Incomprehensible messages awaken our imagination. Similarly, messages about genetic risk need practical contexts that make the information […]

Genetic risk entails genetic responsibility

Intellectual optimists have seen genetic risk information as a human victory over nature. The information gives us power over our future health. What previously would have been our fate, genetics now transforms into matters of personal choice. Reality, however, is not as rosy as in this dream of intellectual power over life. Where there is […]

Thesis on reproductive ethics

On Thursday, February 28, Amal Matar defends her thesis in the field of reproductive ethics. As genetic tests become cheaper and more reliable, the potential use of genetic tests also expands. One use could be offering preconception genetic screening to entire populations. Prospective parents could find out if they are carriers of the same recessive […]

Why do we pay for genetic information that we do not use?

About half a million people around the world have purchased direct-to-consumer genetic tests. A large majority say that they are willing to pay for the genetic information, even if the results do not reveal anything of clinical value. If so, why do they want to buy genetic information about themselves? Many say they want health-relevant […]

Swedish policymakers on genetic screening before pregnancy

Some genetic diseases do not develop in  the child unless both parents happen to have the same gene. Parents can be healthy and unaware that they have the same non-dominant disease gene. In these cases, the risk that their child develops the disease is 25 percent. Preconception expanded carrier screening could be offered to entire […]

Genetic risk: Should researchers let people know?

Should researchers inform research participants if they happen to discover individual genetic risks of disease? Yes, many would say, if the information is helpful to the participants. However, the value of complex genetic risk information for individuals is uncertain. Jennifer Viberg Johansson suggests that this uncertainty needs to be acknowledged by both geneticists and ethicists. […]

Ethics, human rights and responsible innovation

It is difficult to predict the consequences of developing and using new technologies. We interact with smart devices and intelligent software on an almost daily basis. Some of us use prosthetics and implants to go about our business and most of us will likely live to see self-driving cars. In the meantime, Swedish research shows […]

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