Blanket Consent and Trust in the Biobanking Context

One key worry here concerns misuse of samples, but other concerns are mentioned in the literature. We will unpack the most relevant worries below. There is not a clear consensus on the use of the various terms associated with consent, which can lead to some confusion. So here is our take on the key meaning of them in the context of research and biobanking. Specific or narrow consent is consent for only one research use of a sample. Broad consent is consent to more general use of a sample, but still in a rather circumscribed way, e.g., for research into a specific (type of) disease. Dynamic consent is a form of consent where the consenter must re-consent to each new use. Blanket consent is a “one-off” consent to general use of the sample for research purposes, without the need of re-consenting.

See http://​www.​genome.​gov/​10002077 for a helpful overview.

Remember that not all forms of harm to third parties are illegitimate. When Amy decides to buy a particular newspaper, Amy benefits that particular publisher, but also, by moving market shares, harms other publishers. Nozick’s famous example of two suitors that can’t both be satisfied applies as well. “Harm” is not necessarily illegitimate; harms against the rights of persons are.

Another form of “harm” to third parties (of which the donor herself may be included) sometimes discussed in the literature concerns so-called “non-welfarist,” or “dignitary” harms. Essentially, non-welfarist considerations are (putatively) morally relevant concerns that are not wholly reducible to individual welfare. To exemplify, it might be argued that revealing the genetic background for some minority group with the best scientific methods is morally questionable if doing so is in conflict with certain cultural beliefs of that group. It would take us too deep into matters that are not essential to our argument to go into this. However, it might be said that appealing to non-welfarist harms in order to argue against the legitimacy of blanket consent founders for much the same reason as just spelled out in relation to ordinary harms to third parties. One could argue, plausibly in one sense, that “the more opportunites there are for misuse, the worse, so let us limit the opportunities.” However, we often, and reasonably, do not attach such limitations to our acts of consent. Amy could consent to Ben’s borrowing her shovel whenever she does not use it even if this gives Ben many more opportunities for misusing the shovel. That act of consent does not seem more dubious than a more restricted form of consent, or at the very least, it is not necessarily more dubious.

An important caveat here: in the Pakistan case (and likely in similar contexts), biodata may reveal information about, e.g., lineage, and it could be speculated that certain forms of information could be used to, e.g., blackmail or worse. However, that is true for data derived from samples given based on trust and samples given based in standard informed consent equally.