The Ethics Blog

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

Tag: integrity (Page 2 of 3)

Openness as a norm

Why should scientists save their code keys as long as 20 years after they conducted their study, the Swedish Data Inspection Board apparently wonders. In its opinion to a proposed new Swedish law on research databases, it states that this seems too long a period of time. Yet, researchers judge that code keys need to […]

The need of a bird’s-eye view

In the previous blog post I wrote about the tendency in today’s research to build common research platforms where data are stored and made open: available for future research, meta-analysis and critical scrutiny of published research. The tendency is supported at EU level, by bodies responsible for research. Simultaneously, it is obstructed at EU level, […]

Revised European data protection will make data about rare diseases even rarer

EU is currently discussing changes to the European privacy laws. The intention is to strengthen the protection of privacy and to give people more control over their data. The problem, which I highlighted on The Ethics Blog, is that the new proposal applies also to research. Presently there is an exception for scientific research about […]

Don’t shoot at the patient (or at the messenger)

The newly proposed European Data Protection Directive overprotects research participants and exposes patients to greater risks of contracting illness and dying. Thus dramatically a recent article in The Lancet Oncology can be summarized, written by Mats G. Hansson at CRB together with Gert Jan van Ommen, Ruth Chadwick and Joakim Dillner. People who provide data […]

No consent for maintaining high-quality health care?

Collecting biological samples and health information from healthy donors in the construction of biobanks and research registers obviously requires the donors’ informed consent. But is a similar demand for consent reasonable when patients provide their doctor with samples for diagnosis, undergo medical examination and treatment, and answer the doctor’s questions? Or can patients be expected […]

Research for the sake of the patient

We regularly tell strangers about sensitive aspects of our lives. We do it every time we visit the doctor. We do it without hesitating, in spite of the fact that the information won’t stay with the doctor to whom we give it. The information is archived and will be read by health care staff in […]

Genetic exceptionalism and unforgivingness

What fuels the tendency to view genetic information as exceptionally private and sensitive? Is information about an individual’s genetic disposition for eye color more sensitive than the fact that he has blue eyes? In Rethinking Informed Consent in Bioethics, Neil C. Manson and Onora O’Neill make heroic efforts against an avalanche of arguments for genetic […]

“The Route” is taking shape

Our plans for the interactive part of the conference program for HandsOn: Biobanks, in Uppsala 20-21 September 2012, are taking shape. This part of the program is called “the Route.” During coffee and lunch breaks, participants can walk through an interactive exhibition illustrating the process of informed consent, data and sample sharing, and new legislation. Within the […]

Handling mistaken trust when doctors recruit patients as research participants

Patients seem more willing to participate in biobank research than the general public. A possible explanation is the doctor-patient relationship. Patients’ trust in health care professionals might help doctors to recruit them as research participants, perhaps making the task too easy. That trust in doctors can induce a willingness to participate in research seems threatening […]

Research before health care

Last week I blogged about the unique status that personal data have in science. Researchers are not interested in the persons behind the data and they have no intention of returning to them; an intention that most other personal data collectors have. In an age of increasing integrity threats, it is uplifting that biobanks and […]

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