Biobanks trigger debate
– You shouldn’t see healthcare as a right, but rather as an opportunity, and then we have to work together to ensure that medical research can benefit all of us, says Joanna Forsberg at the Centre for Research Ethics and Bioethics at Uppsala University. This spring she defends her thesis about biobank ethics.
How do ethics and law interact in the case of biobanks? The issue came up recently when the Swedish Data Inspection Board stopped the research project LifeGene because of its “unspecified aim” of storing biological samples for future research. According to the physician and doctoral candidate Joanna Forsberg, who has specialised on biobank ethics, the problems with LifeGene are more legal than ethical.
– But things are happening in this field. The 2003 Biobank Act is under revision.
Under that act each patient must be asked whether a sample may be stored in a biobank for future research, for example. The revision of the law now being proposed assumes, that people want to contribute to research but have the right to say no.
Joanna Forsberg has paid a lot of attention to patient consent.
– The consent of the patient is a precondition for the sample to be stored in a biobank. But after that, when the biological
material is to be used for research, an ethical committee has to give its approval. The committee often decides that the person has to be asked again, a process that requires both time and money.
The right to decide about your own body is strong, even if it is a matter of individual cell samples. Some people disapprove of biobanks because they believe that the material will be used in research they don’t want to contribute to. Another reason is the fear that information from the sample analysis will reach the wrong people.
– The security aspect is of course important for people to be able to give their consent, says Joanna Forsberg.
After the assassination of Foreign Minister Anna Lindh the police made use of information in a biobank to find the murderer, something that turned some people against storing material in biobanks.
– But I think we all have an obligation to participate in research that in a longer perspective leads to better medicines and
better healthcare. It’s in my own best interest and that of others.
In the U.S. there is talk about economic compensation for those who participate in promoting research, but Joanna Forsberg dismisses such thoughts. Who would get this compensation? Only those who contributed to effective drugs, and not others?
– That would be impossible to determine. They’re all equally important. No, what might work is a symbolic gift when they donate the sample, like what blood donors get.
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What is a biobank?
An organised collection of samples that are gathered, stored, and registered for the purpose of being conserved for scientific studies, treatment, and investigations. The individuals are anonymous, as all material is coded. Samples can be everything from blood to tissue. Biobanks are found in many places in Sweden, for example, at all hospitals with a pathology division.
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Gunilla Sthyr