Survey of Principal Investigators in Biobanking: Knowledge, Attitudes, and Research Behaviors About Transgender and Gender-Diverse Patients

摘要

PURPOSE:Biobanks usually do not collect transgender and gender-diverse (TGD) demographic information, hindering research on cancer risk and biological effects related to gender-affirming interventions.METHODS:In August 2019, 172 scientists involved in biobanking research at a single institution (H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL) were invited to complete a survey measuring knowledge and attitudes about TGD health and research practices. Quantitative and qualitative analyses were performed.RESULTS:Among 47 respondents, there was high agreement (77%) regarding the importance of collecting TGD identities and histories of gender-affirming treatments with biospecimens, which was contrasted by low self-reported rates of respondents’ biorepositories allowing for the entry of TGD identities (14.9%) and histories of gender-affirming interventions (8.5%). There was high interest in receiving education regarding the unique cancer health needs of TGD patients (74%), and knowledge questions yielded high percentages of “neutral” and “don’t know or prefer not to answer” responses. After completing the survey, confidence in knowledge of health needs for TGD patients decreased significantly (48.9% were confident during the presurvey assessment v 36.2% in the postsurvey assessment; P < .001). Qualitative analysis of open-ended questions indicated overall support of TGD data inclusion in biobanks along with perceived barriers to inclusion of such data in biobanks.CONCLUSION:To our knowledge, this was the first study of researchers to assess knowledge, attitudes, and research practices regarding TGD patients. Overall, there was limited knowledge about TGD health and cancer needs and low rates of TGD demographic data collection but a high interest in receiving education regarding this community.