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

Can infrastructure for biobank research make ethical notions obsolete?

In a comment to what I posted earlier about the decision of the Swedish Data Inspection Board to stop LifeGene, Åke Thörn asks what I mean by saying that

  • “LifeGene represents a new reality in the making.”

Since the question has deep interest, I want to answer it here, in a new post. I will use a simile to explain my intended meaning.

Suppose that rather than discussing biobank ethics, we were playing a form of chess with the strange feature that the chessboard sometimes changes. Squares turn into circles. Or the entire chessboard turns into a rhomb.

These changes of the chessboard make the old rules obsolete. What is “straight” and what is “diagonal” on a chessboard with the shape of a rhomb? The rules need to be reconsidered!

Research ethics and ethical review can be compared to games played on chessboards that sometimes change and require that rules and basic notions are reconsidered. What I meant in my previous post was that LifeGene represents such a basic change of the research ethical chessboard.

How should the “aim” of biobank infrastructure be described, given that infrastructure is not a research project with the aims of individual biobank projects? Do people turn into “research participants” when their ten-year old blood samples are used in new studies?

We cannot always cherish old ethical notions – as if there were no such things as TIME and CHANGE. We sometimes need to rethink rules and basic notions.

I hope these considerations explain my understanding of ethics as sensitive to changing times, and my notion of LifeGene as a “new reality.”

Pär Segerdahl

We challenge habits of thought : the Ethics Blog


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  6. Willliam Fields

    A collection of genetic information is information; however, once it is retrieved as data within a research project of specific aims, the matter of informed consent by the subject is an immediate matter of individual welfare. As we all agree, children are not competent to provide informed consent; however, can a parent provide consent for their child who might not be affected by the consent until adulthood? With respect to the current state of the art, I might even speculate that adults cannot provide informed consent regarding the social, political, legal, and financial consequences of their own genetics because the potential informational richness of the genome is unknown. That is, what is the limit of my genes to reveal critical matters of my personhood that, if known by others, might impact how I interact with the world socially, legally, and economically? The Swedish Data Inspection Board is wise to weigh more heavily upon human protection over the obvious enormous value provided by the infrastructure of a biobank. If the biobank is not treated as one of the projects that means to use it then one cannot use it because you can never separate the person from the genome even with proxy labels. The actual genetic signature is the identity of the person, right there, illuminated in base pairs. One’s genetic identity is the data! You only need a subsequent biological sample to determine if an individual is represented in the biobank and what the bioinformatics reveal about the individual and to whom the subject is related. While confidentiality is a feature of scientific methodology, I quite imagine that social media will, one day, allow for the posting of one’s genome and current epigenetic status, without or without understanding one’s privacy settings. Will the average person invest in authentically informed consent in such complex matters? Might scientist use public genetic information in a methodological manner as data without consent? I imagine the answer will be “no” because it is not the information but rather the interpretation (transubstantiation into data) of the information that disturbs the social neutrality of it.

    • Pär Segerdahl

      Thanks for that reminder about the importance of being cautious with genetic information. I think that when informed consent is being sought in the construction of biobanks, it is important that one asks for consent not only to a certain kind of research (e.g., medical research about common diseases), but also to a framework concerning data and sample storage (and sharing). For biobank participants, that framework probably is more important than the purposes of specific research projects (as long as the purposes are in a particular domain).

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