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

Critique of the motivation for dynamic consent to biobank research

Pär SegerdahlBiobank research has undeniably challenged research ethics and the requirement for informed consent. We are after all dealing with collection of biological samples for future, yet unspecified research. Thus, one cannot give donors specific information about the research in which their samples will be used. It might seem like asking them to consent to unknown research projects x, y, z.

While some argue that broad consent for future research is specific enough to be genuine consent to something – one can inform about the framework that applies to the research – others argue that biobank research undermines the autonomy of research participants. Something must therefore be done about it.

Dynamic consent is such a proposed measure. The idea is that participants in biobank research, through a website, will be kept continuously informed about planned research, and continually make decisions about their participation. Through this IT measure, participants are placed at the center of decision making process rather than transferring all power to the researchers. Dynamic consent empowers research participants and supports their autonomy, it is claimed.

In an article in the journal Bioethics, Linus Johnsson and Stefan Eriksson critically examine the understanding of autonomy in the debate on dynamic consent.

First, the authors argue that autonomy is misunderstood as a feat. Autonomy is rather a right people have to decide for themselves what to do in situations that matter to them.

Second, they argue that the concept of autonomy is used too broadly, hiding important distinctions. In fact, three different ways of respecting people are conflated:

  1. Autonomy: respecting people’s right to decide for themselves about what to do.
  2. Integrity: respecting people’s right to draw the lines between private and social life.
  3. Authority: respecting people’s right to take responsibility for themselves, for their families, and for their relations to society.

Authority is respected by empowering people: by giving them the tools they need to live responsibly. In dynamic consent, the website is such a tool. It empowers participants to act as responsible citizens concerning the planning and carrying out of research in society.

By separating three forms of respect which are confused as “autonomy,” the authors can propose the following critical analysis of the motivation for dynamic consent. Rather than respecting people’s right to decide for themselves about what to do, the aim is to empower them. But if the empowerment forces them to sit in front of the computer to be informed, it violates their integrity.

Such intrusion could be justified if medical research were a suitable arena for people’s empowerment as citizens – an assumption which the authors point out is doubtful.

Pär Segerdahl

Johnson, L. and Eriksson, S. 2016. “Autonomy is a right, not a feat: How theoretical misconceptions have muddled the debate on dynamic consent to biobank research.” Bioethics, DOI: 10.1111/bioe.12254

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  1. Wolf

    “Broad consent, “Yes or no?”” sets up the wrong question and thus moves you to conceptual confusion. Any health related data, even data that have undergone a well designed anonymization process can never be considered to be unlinkable to their donor. This applies to presence and future as well. Especially, when your and other’s research outcome is fed back into the database (!).
    So – ANY kind of consent in general – is only acceptable as legal basis for research, as long as the data are technically and legally protected from any non-research access you might think of. (I.e.: you really need to consider what might go wrong, today, and even in ten years, when your research job will haveended since long.) This is why swedish legislation forbids a – biobank database as such – being given to abroad. (Sadly, only Sweden -imho- has this legal ruling.) The right and big question comes from transnational research. Adding data (no matter what kind of consent) for research purposes into a transnational pot, where – on the long run – nobody is really responsible for the management of keeping nosy non-research access out, that is the number one hot thing with biobanking, – not “broad consent, yes or no”. Just my 2 cents.

    • Pär Segerdahl

      Thanks for interesting comment! I agree about the importance of ensuring that data collected for research purposes aren’t accessible for non-research purposes.

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