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生物库主要研究者调查:跨性别和性别多样化患者相关知识、态度和研究行为。

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

机构信息

University of South Florida, Morsani College of Medicine, Tampa, FL.

H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL.

出版信息

JCO Oncol Pract. 2020 Oct;16(10):e1192-e1201. doi: 10.1200/OP.20.00193. Epub 2020 Jun 11.

DOI:10.1200/OP.20.00193
PMID:32525751
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7564131/
Abstract

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 36.2% in the postsurvey assessment; < .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.

摘要

目的

生物库通常不收集跨性别和性别多样化(TGD)人群的人口统计学信息,这阻碍了与性别肯定干预相关的癌症风险和生物学效应的研究。

方法

2019 年 8 月,邀请了参与佛罗里达州坦帕市 H. Lee Moffitt 癌症中心和研究所(H. Lee Moffitt Cancer Center and Research Institute,Tampa,FL)生物库研究的 172 名科学家完成了一项调查,该调查衡量了他们对 TGD 健康和研究实践的知识和态度。进行了定量和定性分析。

结果

在 47 名应答者中,有 77%的人强烈认同收集 TGD 身份和性别肯定治疗史与生物样本的重要性,但报告的允许 TGD 身份(14.9%)和性别肯定干预史(8.5%)进入生物库的应答者比例较低。有 74%的人对接受有关 TGD 患者独特癌症健康需求的教育很感兴趣,知识问题的回答中,有很高比例的人表示“中立”或“不知道或宁愿不回答”。完成调查后,对 TGD 患者健康需求的知识的信心显著下降(预调查评估时 48.9%有信心,而在调查后评估时为 36.2%;<.001)。对开放式问题的定性分析表明,总体上支持在生物库中纳入 TGD 数据,并认为存在将此类数据纳入生物库的障碍。

结论

据我们所知,这是第一项评估研究人员对 TGD 患者的知识、态度和研究实践的研究。总体而言,人们对 TGD 健康和癌症需求的了解有限,TGD 人口统计数据的收集率也较低,但对该社区的教育有很大的兴趣。

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