The Ethics Blog

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

Tag: genetic risk information (Page 1 of 2)

People want to be able to influence the risk

We need to do research to know what people think is important in genetic risk information. What they prefer to know. But how do we find out? One way is to ask people to answer questionnaires. One problem with questionnaires is that they ask one thing at a time. Do you prefer a hotel room […]

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 […]

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. […]

Communicating risk in human terms

The concept of risk used in genetics is a technical term. For the specialist, risk is the probability of an undesired event, for example, that an individual develops some form of cancer. Risk is usually stated as a percentage. It is well known that patients have difficulties to access the probability notion of risk. What […]

What is the risk?

To communicate about genetic risk with patients, we need to know how people think about risk and that experts and people in general often think differently. A common feature, however, is this: Risk has to do with future adverse events. We talk about the risk of getting sick. But we rarely talk about the risk […]

Laboratories interpret genetic test results differently

A new study suggests that the results of genetic tests are not always as reliable as we want to believe. A comparison between laboratories providing these tests shows that the same genetic variant can be interpreted differently. A single gene variant can thus be interpreted as an increased risk of breast cancer by one laboratory, […]

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