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

Tag: risk information

On “truly” understanding the risk

Pär SegerdahlIt is a well-known psychological fact that people have great difficulties to understand probabilistic risks. What does it actually mean that the risk of developing breast cancer the next ten years is fifteen percent? In addition to the difficulties of understanding probabilities, mathematical expressions can cause a false appearance of exactitude and objectivity. It is often about uncertain evaluations, but expressed in seemingly definitive figures.

At our Monday seminar, Ulrik Kihlbom discussed another difficulty with understanding risk information. It can be difficult to understand not only the probabilities, but also what it is you risk experiencing. Sometimes, people face enormously complex choices, where the risks are high, but also the benefits. Perhaps you suffer from a serious disease from which you will die. However, there is a treatment, and it may work. It is just that the treatment has such severe side effects that you may die even from the treatment.

Ulrik Kihlbom interviewed physicians treating patients with leukemia. The doctors stated that patients often do not understand the risks of the treatment they are offered. The difficulty is not so much about understanding the risk of dying from the treatment. The patients understand that risk. However, the doctors said, no one who has not actually seen the side effects understand that the treatment can make you so incredibly ill.

Yet, it seems like quite comprehensible side effects: fatigue, serious infections, nausea and vomiting, stomach cramp, diarrhea, skin irritation, pain, and weight loss. Why would patients find it difficult to understand these risks?

Could it be that doctors have too high demands on “real” understanding? Must the patient, in order to “truly” understand the side effects, already have experienced the treatment? According to the doctors, experienced patients are at least easier to inform about the side effects. At the same time, the requirement that one must have had the experiences to really understand them seems too strong.

Rather, says Ulrik Kihlbom, doctors probably notice from the patients’ attitude that some of them underestimate what it is like to experience the side effects. Such attitudes can be sensed. The patients understand verbally that they are at risk of these side effects, but emotionally they do not really understand what the side effects are like, especially when they come together for a long time.

This resembles a general human difficulty. We often neglect how we ourselves are affected by our experiences. We project our present, unaffected self, and think: “I’m strong, I can handle those side effects.” However, when we actually experience the side effects, we are no longer strong! The self is not a constant, but changes with our experiences.

Here, then, it is not the probabilities that cause the difficulties, but the words. We understand the side effects verbally and can easily reproduce them. However, even words can cause a false appearance of objectivity: as if the experiences the words denote would not really reach us at our core. We separate ourselves from what we verbally understand we may experience, as if we could live our lives without being affected… without actually living them.

Ulrik Kihlbom has found a striking example of yet another aspect of the difficulty of understanding risk information. Not only probabilities but also common words such as “nausea” can create characteristic misunderstandings of risk information.

Pär Segerdahl

This post in Swedish

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Fourth issue of our newsletter about biobanks

Now you can read the fourth newsletter this year from CRB and BBMRI.se about ethical and legal issues in biobanking:

The newsletter contains three news items:

  1. Moa Kindström Dahlin describes the work on ethical and legal issues in the European platform for biobanking, BBMRI-ERIC, and reflects on what law is.
  2. Josepine Fernow features two PhD projects on research participants’ and patients’ preferences and perceptions of risk information.
  3. Anna-Sara Lind discusses the ruling of the European Court of Justice against the Safe Harbour agreement with the United States.

(Link to PDF version of the newsletter)

And finally, a link to the December issue of the newsletter from BBMRI.se:

Merry Christmas and a Happy New Year!

Pär Segerdahl

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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