Centrum för forsknings- & bioetik (CRB)

Bioethicists suggest broad consent for biobank research

2015-09-28

It is still unclear what kind of consent should be used when collecting biological samples for future research. Different forms of consent are practiced. This creates another uncertainty: which research is actually permitted with the collected samples?

This haphazard situation leads to unintended constraints on research. But it also leads to research sometimes being carried out without consent.Against this background, the US National Institutes of Health (NIH) organized a workshop in September 2013 where bioethicists discussed whether it is ethically reasonable to manage these uncertainties by using broad consent for future research when collecting biological samples.

The participants recently published their thoughts and conclusions in the American Journal of Bioethics. They propose that broad consent is ethically reasonable and often the best option, if the consent is obtained at the start, in connection with sample collection. There also needs to be a system for oversight and approval of future research. The final requirement is that, as far as possible, there should be ongoing communication with, and information to, donors.

Biological samples are collected in a variety of contexts. It is here that the haphazard situation arises, if different forms of consent are used, or perhaps no consent at all.
By initially informing potential donors of the wide range of research that can be carried out, they can take a position on risks and benefits of donation (given the oversight and the general conditions of the future research that they are informed about).

The group emphasizes that broad consent gives donors control over the use of samples, while minimizing costs and burdens for both donors and researchers. They also point out that empirical studies show that most people want to decide if their samples may be used for research. Most respondents also say that the decision is not influenced by the specific details of the future research (e.g. what diseases are studied, what techniques are used, or which parts of the sample are studied).

Of course there are examples of research that can be perceived as controversial, such as human cloning. But broad consent can be combined with specific restrictions. Oversight moreover considers whether research proposals can be said to comply with the donors' values.

Mats G. Hansson from CRB is one of the bioethicists behind the paper. According to him, broad consent respects donors autonomy and allows research that can improve medical treatments in the future.

Read article: Broad Consent for Research With Biological Samples: Workshop Conclusions

Mats G. Hansson is one of the scholars behind the article. He has followed the discussions on informed consent for the better part of his career and recently wrote about a model for broad consent called trust based consent for a previous issue of Biobank Perspectives: Trust based consent looks promising

By Pär Segerdahl

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