Millions of Taiwanese biobank samples might soon be destructed bacause of lack of participant consent. Read more here.
This illustrates the topic I introduced in my previous blog post, Research ethics in a new situation. The ethical regulation introduced last year in Taiwan was intended to protect human subjects who provided samples to biobanks. But since contacting people in millions long after they provided samples is an expensive and time-consuming process with uncertain result, the actual outcome may be that their samples are destroyed, and thereby also opportunities of future research into common diseases. Ethical regulation and consent procedures clearly create their own ethical problems.
It is not clear in the article if the samples that are to be destroyed include clinical samples taken from patients for their own benefit (but “surgical tissue samples” are mentioned). If this is the case, the argument against destroying them is even more obvious. Such samples may be of vital interest to individuals, as is illustrated by a recent case in Sweden where a pathologist misdiagnosed potential tumors in a large number of patients. Had these tissue samples not been stored, there would have been no way to re-examine them. On my view, requiring informed consent for storing such samples is unethical. Although the benefits from using samples in research are not as direct (i.e. I may not benefit from the specific study that my sample is used in), the same line of reasoning arguably applies.
@Joanna Forsberg: Thanks for this interesting reflection. If I understand you right, you mean that the perspective that patients have on their stored samples (that the samples are stored for their own benefit) is valid also for samples used for research. Even if the sample donor is not a patient, biobank samples collected for research purposes are stored for their own benefit (as future patients etc.).
Yes, at least when it comes to clinical samples. I guess a donor to a research biobank could claim that he or she donated a sample out of pure altruism, and has no personal interest in medical advances. But patients do.
I find it strange that informed consent is required for storing clinical samples taken for the benefit of the patient when medical records are kept without consent, as are the results of various examinations, e.g. CT-scans. Why should tissue samples be treated differently? Obviously, they can be used for purposes other than those originally intended, but this is true of all medical data. IF informed consent is to be required it seems to me that it should be to use the samples, not to store them.
If I went to the hospital as a patient but decided I would not allow the hospital to keep and use my medical record, I would be acting almost as strangely as if I went to the post office and asked if an expected parcel had arrived, but then refused to give my name. If tissue samples are perceived differently than medical records, perhaps it is partly because there is less recognition of their functions in the treatment of patients, and partly because news about advances in genetics have replaced awareness of these functions with threatening PICTURES? Your tissue sample is lika a hologram that contains the whole of you, or like a mine carrying your vulnerable name and in which strangers can dig up parts of you. If I understand you right, you view tissue samples from within the practices of health care and medical research. Skepticism comes from the outside, from thretening PICTURES?