Patient preferences for use of archived biospecimens in Turkey.
Authors: Kubilay Tolunay Pinar , Erol Cihan , Kahraman Seda , Tacar Seher Yildiz , Özcan Erkan , Basal Fatma Bugdayci , Köse Fatih , Sendur Mehmet A.N. , Tural Deniz , Cicin Irfan , Oksuzoglu Berna , Ürün Yüksel ,   ASCO Pinar Group
Published: June 2023

e18904

Background: In the era of precision medicine translational research biospecimen collection and data sharing is increasingly needed. Ethical challenges emerge when researchers want to use archived biospecimens without informed consent. We examined Turkish cancer patients' or their family member's preferences about informed consent and the use of excised and stored (tumor) tissues in medical research. Methods: A questionnaire in Turkish language was conducted including the sociodemographic characteristics of the participants and preferences about informed consent and use of tumour tissues in medical research. The study was carried out in 5 tertiary health care institutions with clinical research centers in Turkey. Adult patients diagnosed with solid tumors or their family members who agreed to participate were surveyed by medical doctors between January 2020 and April 2021. Results: 978 people whose age ranged 18 and 82 (Mean = 51.43, SD = 14.41) participated in the study. %50.3 were male, %49.7 were female. %60,2 were cancer patient, %39,8 were family member. %82.4 stated that informed consent must be obtained before participating into clinical trials. %31.5 think that infomed consent can be given by their family members. %32.1 stated that medical records can be reviewed for scientific purposes without their consent. %54.9 know that tumor tissue samples stored in hospitals. %38.9 think that tissue samples belong to hospital. %65.6 agrees that tissue or blood samples may be used for research purposes. %49.8 gives permission for tumour tissues or blood samples to be used for research purposes without informed consent. %40.7 gives permission for genetic tests or DNA analysis without informed consent. According to %57.2 of the participants if tumor tissue is going to be used for research purposes, written consent must be obtained. %62.1 stated that if they give permission for a research their tissues can be used for every research. %65.5 allows tissue samples could be linked to personal medical records with their name and personal information confidential. Top motivations for allowing biospescimens for medical research are help treat other people (%76.3), help advance science (%68.4). %50 allowed their tissues to be used for research after their death, %39.1 wants their family members to give consent. Only %23.5 of participants stated that he or she had sufficient knowledge about personal data protection law in turkey. Conclusions: This study contributes to the data on the aspects of cancer patients about tissue banking. The majority of patients are willing to allow their tissues to be used for research purposes and to allow their medical records to be associated with tissue samples. However, there are also patients who are unsure. Comprehensive informed consent and optional consent models should be developed to improve the acceptability of tissue banking programs, and patients should be informed about the potential benefits of tissue donation.