You must be able to justify the necessity of collecting any pieces of personal information or biological samples. You should also avoid generating or deriving new information about your subjects unnecessarily (for example, by performing extra tests).
Obtaining / recording / processing more information than you need will pose excessive and unjustified privacy risks to subjects, for example, if research data is hacked or stolen.
However, there are also other risks apart from the risk of privacy breaches.
For instance, the proliferation of breast cancer research in recent years has depleted the store of breast tissue samples in pathology labs. Many of these samples have been stored in case they are needed for future clinical diagnostic purposes, such as to determine a patient’s eligibility for new cancer therapies that are targeted to specific cell types. When limited biological samples are used up for research, this could hinder patients’ chances of receiving effective clinical care. (7–9)
3. De-identify as soon as possible →
Looi LM. Personal communication with Prof. Datuk Dr. Looi Lai Meng, Chair of UMMC Medical Research Ethics Committee and senior consultant histopathologist. 2019.
Riegman PHJ, Morente MM, Betsou F, de Blasio P, Geary P. Biobanking for better healthcare. Mol Oncol. 2008 Oct;2(3):213–22. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5527804/
Wilkins B. The retention and storage of pathological records and specimens (5th edition) [Internet]. The Royal College of Pathologists; 2015. Available from: https://www.rcpath.org/uploads/assets/uploaded/97364ab3-b679-43ab-8afb47be199e1d3c.pdf