The Ethics Blog

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

Tag: incidental findings (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 […]

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 […]

Openness as an ethical ritual

Barbara A. Koenig wrote last year about how informed consent has acquired a “liturgical feel” in biomedical research ethics. Each time the protection of research participants is challenged by new forms of research, the answer is: more consent! The procedure of informing and asking for consent may feel like assuming a priestly guise and performing […]

Second issue of our newsletter about biobanks

Now you can read the second newsletter this year from CRB and BBMRI.se: Biobank perspectives: current issues in biobank ethics and law The newsletter contains four news items: 1. Anna-Sara Lind presents a new book, Information and Law in Transition, and the contributions to the book by CRB researchers. 2. Anna-Sara Lind describes the situation […]

Letting people choose isn’t always the same as respecting them

Sequencing the entire genome is cheaper and faster than ever. But when researchers look at people’s genetic code, they also find unexpected information in the process. Shouldn’t research participants have access to this incidental information? Especially if it is important information that could save a life if there is treatment to offer? The personal benefits […]

Intellectualizing morality

There is a prevalent idea that moral considerations presuppose ethical principles. But how does it arise? It makes our ways of talking about difficult issues resemble consultations between states at the negotiating table, invoking various solemn declarations: “Under the principle of happy consequences, you should lie here; otherwise, many will be hurt.” “According to the […]

The risk with knowing the risk

Informing individuals about their genetic risks of disease can be viewed as empowering them to make autonomous decisions about their future health. But we respond to risk information not only as rational decision makers, but also with our bodies, feelings and attitudes. An American study investigated elderly people whose genetic test results showed a predisposition […]

Idling biobank policy?

If you allow researchers to do brain imaging on you for some research purpose, and they incidentally discover a tumor, or a blood vessel with thin walls, you probably want them to inform you about this finding. There are no doubts about the finding; the risks are well-known; it is actionable. Suppose instead that you […]

Unhappy approach behind policy for incidental findings

Should individual research participants be informed if biobank researchers incidentally discover increased genetic disease risks through analysis of their samples? At a seminar, Jennifer Viberg recently discussed a well-known recommendation for when participants should be informed about incidental findings: Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations During the seminar it became increasingly […]

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